Purple Puzzle Place

I saw my new doctor today. He was a definite improvement over most of the other doctors I've seen. He treated me like an individual and seems willing to put time and effort into something that's obviously not simple or straightforward.

He isn't quite the super-engaged, close-attention, mind-like-a-trap type like the GI specialist. He asked several questions over again multiple times, seemed slightly distracted at times, and kind of brushed off some of my questions. But there were a lot of issues to discuss, so we had to prioritize and that was okay.

################

He did say that even if I have a torn ligament in my shoulder (which seems likely) it's not something they can do much about this long after the injury, other than giving me exercises to do. I hope something will help enough that I can at least lift something heavier than a glass of water with that arm soon.

Dr. L said that he tends to think fibromyalgia/CFS/IBS are diagnoses given when they don't know what's wrong with you and "doctors are blowing you off." They're descriptions of a set of symptoms, many of which may be caused by different things rather than one concrete thing.

He tends to think that when there are tons of allergies with new ones popping up all the time, it's probably an indication of a larger immune system dysfunction rather than "just" isolated allergies. He's not a big fan of western medicine's tendency to look at something like allergies or other symptoms as a discrete thing in themselves separate from the rest of the body and systems.

Dr. L also said that, as he was sure I knew (which I did), it's unlikely he's going to be able to find some simple cause that will explain all my symptoms and that will be completely and immediately fixable. I've been dealing with this stuff for 10 or 20 years now, and it's not going to just go away just like that. Still, he thinks we should look for root causes and that he can at least help me feel better and manage things, if not cure me completely.

He was surprised and impressed that I'm not on a bunch of painkillers and other medications; he said that's unusual for patients like me. Usually people who come to him with similar histories are on numerous different drugs prescribed by various doctors that aren't really helping, but often become addictive.

He was really surprised at what tests had not ever been run for me, and ran some panels to check for autoimmune disorders such as lupus, etc. as well as looking at kidney function, an anemia panel, etc.

I liked that he didn't seem to have the doctors-as-gods attitude, but also didn't seem willing to just throw up his hand and say "who knows" either.

I also appreciated that he didn't just look at things as "normal" or not according to the official line on things. For instance, even though my creatinine levels fall within the official "normal" range, he said that for a person my size and weight they are a little high, and definitely warrant a closer look--especially considering the family history of hereditary kidney failure.

He had the lab draw blood and run several panels, and then will see me again to discuss the results. At that point he may refer me to a rheumatologist to look more deeply at possible autoimmune issues. He suggested that if all the tests come back negative and they aren't able to help me, I may want to look into alternative medicine such as homeopathy or acupuncture. I thought that was interesting, and somewhat unusual for an allopathic (traditional Western-trained) doctor.

All in all, I felt it was a pretty good appointment. I think this doctor will be one I can work with.

----> In an attempt to find some way to keep myself occupied/distracted while nursing in a way that requires no brainpower, committment or real engagement, I've started cataloguing the books I own in LibraryThing. It's a fun little widget.

----> I recently wrote an article called Making the Most of Internet Searches that might be helpful for somebody somewhere. I used searches relating to corn allergy as examples, but the concepts are much more widely applicable.

----> Submissions to Pediatric Grand Rounds are due by Saturday. I've enjoyed reading it often and taking part in it once. Now I'm trying to decide whether anything I've written recently (or plan to write in the next few days) would be appropriate to submit for consideration this round.

----> It's not something I can link to, but I wanted to say a big thank-you to my friend JT (fellow journalism major--yes, that good friend) who has volunteered to care for the older girls during Baby E's EGD next Friday. Thank you so much.

----> I'm really enjoying my food blog, Restricted Gourmet. Not only does it allow me to write down the recipes I create in a place I know I'll be able to find them, but it's turning out to be helpful to others too. People are commenting that they like the recipes, which is nice.

I'm starting to have people e-mail me questions and comments or ask for help in substituting various ingredients. Hopefully I'll get a chance to post some of those this week. That's so exciting to me. It makes me feel that I'm contributing something valuable to others.

----> The other day M&M said to me, "Mommy, why are you always cleaning ever-wee-thing all the time?" It made me think of this.

----> Last night AJ said, "Mom, when I grow up I want to be a wise, kind and helpful person. Do you think I can be that?" Yes, sweet girl, I think you can. You already are, more than you know.

We're getting the doctor at the children's hospital that's supposed to be the best of the GI specialists there for Baby E's EGD next week.

I've gained 3 or 4 pounds this month. That flaxseed oil and the allergy-safe chocolate I've been eating must be doing the trick. Flaxseed oil is actually quite good drizzled over brown rice with some sea salt. Oh, and the potato chips. Kettle Chips are corn- and soy-free and Baby E seems to be able to tolerate them quite well. She and I have been eating a lot of those lately. Mmmmm.

I have the most fabulous husband ever. He's taking over with dinner and the kids tonight so I can go to bed early.

I really like my kids a lot. Everyone else seems to agree with my opinion of them, too, which is nice. :)

Goodnight!

I just called and made appointments with my dentist, my midwife (they finally got things worked out with the insurance company--and no, I'm not pregnant, just need to have some things checked out with an OB), and a new primary care doctor.

I got a recommendation from another mom of a food-allergy kid with complicated health issues in the family, so hopefully this new doctor will be good. Now that we've found such great doctors for Baby E I have hope that maybe I'll get a good doctor myself.

When I told the receptionist some of my symptoms, she asked if I could come in tomorrow. That's sure an improvement over the long wait at the last clinic, especially considering that I'll be seeing my actual doctor and not a PA.

######################

Since I'm still seeing the chiropractor every 10 days or so (injuries from the car accident in June--wow, I didn't realize it was that long ago until I looked it up), that makes for a lot of appointments.

Between Baby E and me, we have an appointment of one kind or another almost every day next week, sometimes two a day. The rest of December is going to be pretty busy too. We don't even have all of Baby E's appointments scheduled yet.

I'm not sure what I'm going to do about the older kids yet. Some of the appointments I'll be able to take them along to, and others I won't. DH took AJ and M&M to work with him on Monday, but ended up having to just bring them home after a few hours.

We have the sweat test scheduled for Monday and the EGD for Friday at the children's hospital. I'm heading to the clinic near us now to get the prescription for reflux medicine filled, and to pick up the equipment I need for taking stool samples.

I found out some family history I hadn't known before last week.

#############

For instance, I didn't know that one of my mom's aunts nearly died from allergic reactions to seafood, and that another has severe food allergies also. I did know that cancer, kidney failure and other serious health issues run rampant in the family.

I knew that both of my dad's parents died younger than we had expected they would--Grandpa of intestinal lymphoma and Grandma of an unknown cause, having been active and fairly healthy until moments before.

I knew that my grandfather (my mother's step-father; not related to us) lost his wife, twin daughters and one of his two grandsons to early-onset Alzheimer's in their 20s or 30s.

I did know that my grandmother on my mom's side had only one surviving child out of 3--one stillborn, one who lived only a few days or weeks, and my mother, who was very premature but survived against the odds. I knew she was given DES while pregnant with my mom.

But I didn't know that grandma thinks her son had cystic fibrosis, if she remembers right.

That's one of the many things they're testing Baby E for. Apparently some of the symptoms she has could point in that direction, although it's not very likely that she actually has it.

I decided after researching cystic fibrosis a bit that I'm not going to allow myself to think about or research the various things they're testing for until something comes back positive. There's no point in stressing about something that's most likely never going to be an issue.

My SIL's sister's son has CF. I understand better now what they're going through. I don't know how they do it, but I'll be praying for them a lot more now that I've read up a bit on the disease.

I'm still not feeling well, but am somewhat functional. Strapping the kids into car seats and taking them for a drive is a comparatively low-energy way to keep them occupied for the afternoon. At least it's better than watching videos and playing computer games, as I've been letting them do for much of the morning.

My Sis J had 15 vials of blood drawn last week, and they're going to be doing more testing to try to figure out what's wrong with her. Some of the possibilities they think likely are not pretty to contemplate.

Little Sister Sparrow is still not feeling well much of the time, too.

My mom is slowly gaining strength, but still sick and weak after her bout with the virus or whatever it was this past week. Thankfully she's been able to keep her anti-rejection drugs down.

I hate that our family has so many health issues. It makes me want to scream.

Sometimes I find myself asking God why life is so often difficult. Then I remind myself that He didn't promise us an easy life . . . just to walk beside us in it.

At least we have something better to look forward to.

Last Saturday some friends from our home group (Malamute Rescue Couple) volunteered to take all three of our kids for the day so DH and I could have a break and some time together.

All three kids loved being with them and their three kids (who are close to our kids in age).

It was wonderful. We felt almost like newlyweds again. Our friends were just as careful about Baby E's allergies as we are, so I was able to relax and not worry about her. It was so nice.

DH and I decided to try eating at Sweet Tomatoes. We hadn't been out to dinner since probably August, when we found out about E's corn allergy.

#################

The manager said that no wash or additive of any kind except plain water was used on the fresh greens, but the melons were soaked in something that might contain corn. The baked potatoes weren't treated with anything, he said.

So I had a salad with iceberg and leaf lettuce, banana squash, zucchini, shredded carrots, radish, and celery. I also had a plain baked potato. I put olive oil, rice wine vinegar, and fresh-ground pepper on it, and it was very good.

As I was eating I noticed that the vinegar had a bit of a sweet taste, but thought maybe that was because it was wine vinegar. I had checked the bottle and all it said was "rice wine vinegar".

The next time I nursed Baby E after eating that meal, she got a rash on her cheeks and they swelled up a bit. I hadn't seen her face puff up like that before--that was a new thing and is a bit scary.

Baby E and I were both rather sick that night. At first I thought my reaction was from eating too much chocolate, but I'm wondering if it was the corn. We ate a small amount of chocolate again last night with no reaction from either of us.

Every time I nursed her from the Sweet Tomatoes meal until halfway through the next day, she got sick. She'd cry and act like her tummy hurt. At first she was just miserable all the time, but as it started to wear off we saw a definite pattern related to her nursing. Her face didn't puff up again, but she definitely had a little rash on her cheeks and then broke out around her mouth. She ended up getting mad at me and not wanting me to even touch her or come near her for a while, presumably because she figured out that my milk was making her sick.

It took us a while to realize that it was something in my milk and not something she'd eaten directly, and then I thought maybe it was soy cross-contamination in the Trader Joe's sunflower butter I'd eaten a couple of times that day. I suppose it could have been both.

I e-mailed the Sweet Tomatoes company to ask if anything I ate might have been contaminated by corn or soy. The next morning someone from the restaurant called and left a message, very concerned.

The rice wine vinegar had corn syrup in it.

He was very apologetic and said that they would be happy to check ingredients for me on anything at any time if I go in again, and that he's confident they can help us be able to eat safely there.

I was impressed with the customer service, but I'm not sure I'll be willing to risk eating there again. Normally we just don't eat out--it's too hard to make sure the food is safe.

The encouraging thing, as DH noted, was that it's the first time in a couple of weeks she's had a bad allergic reaction. It's a very positive thing that she's been feeling good enough most of the time that we were able to tell she was having a reaction and pinpoint the cause.

It appears that all this being obsessive about Baby E's exposure to allergens is a good thing.

Purple_Kangaroo, allergic to coconut, avocado, milk, blackberry leaves, latex, many environmentals (mold, dust mites, pollen, cats, etc.) and most antibiotics. . . Mom to 3 girls, including Baby E who is allergic to corn, soy, oats, kidney beans, apples, banana, mushrooms, mold and ???

We saw the Pediatric GI nurse practitioner today. She was fabulous.

She is indeed the person who spent her day off last week coming over to hear about Baby E from Dr. B. She told me she'd read through all the information several times, and it was obvious she really had. She practically had it all memorized.

##########

She paid close attention, asked good questions, and really wanted to understand Baby E thoroughly. Some of the questions were things I wouldn't have thought to mention, but the answers provided some important clues--like the fact that Baby E has trouble swallowing certain textures without choking or gagging.

I liked the nurse practitioner a lot. She told me that the history I'd written up for Dr. B was very good and quite helpful. She feels that there are reasons and answers for what's going on, and that we should be able to help Baby E feel better or at the very least identify what we're dealing with and figure out what E can and can't eat.

As soon as we figure out what we're dealing with and what Baby E's dietary restrictions are going to be, she's going to send us to a nutritionist to help us work through food issues.

BTW, she disagreed with quite a few things the allergist said. She sees a lot of kids with multiple severe food allergies and says it's certainly untrue that a kid almost never has more than 4 allergies--she sees a lot of kids with many different food allergies.

She also said, unfortunately, that it's rare for a child to grow out of corn and soy allergies as severe as E's, although it is possible. She thinks we should have more allergy testing done (at least for the foods like rice and coconut that we suspect may be problematic) and is going to send me a list of pediatric allergists she recommends.

The one thing she did agree with that the allergist said is that Baby E probably has reflux in addition to whatever else is going on. She disagreed with his choice of medications, though, and wrote a prescription for something different.

The NP went over the naturopath's suggestions for Baby E and said that most of them were harmless or beneficial, so to go ahead and do them. There was one thing (the glyco-nutrients) that she said she'd need to see the ingredients and a bit more information on. So we're going to go ahead and do the flaxseed oil, probiotics, and a course of nystatin to kill any Candida colonization. I'll send her whatever information I can find on the glyco product.

She ordered a lot of tests--blood, sweat, stool, throat, esophagus, and upper intestines. But I didn't feel that she was just randomly throwing a battery of tests at Baby E. She took the time to explain what each one was, why she felt it was indicated in Baby E's situation, and what would be involved with it.

I was really impressed with the other staff as well. Everyone I interacted with seemed really caring and engaged.

They were experienced and knowledgeable about dealing with severe allergies, too. Several times one or another of them said something like, "Now, with our dextrose-intolerant kids we usually . . . "

Baby E isn't the first corn-allergic kid they've dealt with, and they already have procedures in place for dealing with corn and soy allergies. What a relief.

I spoke at length with the nurse in diagnostics, and she really took Baby E's allergies seriously. She seemed well-versed in dealing with allergies.

We will use plain saline for the IV and a general anesthetic for sedation, since both Dextrose and Ringer's Lactated solution contain corn-derived ingredients and the commonly used sedative Propofol is made in a soybean oil base. Since the oral Versed they usually use is in a dextrose solution, they're going to mix the IV version of plain Versed in cranberry juice for her instead.

I feel very comfortable with the clinic and the idea of having Baby E's procedures done there. They're going to do an Esophagogastroduodenoscopy (don't ask me to pronounce that!) instead of just an Upper Endoscopy, because the NP wants to look for esinophilic esophagitis and something to do with the flap at the back of Baby E's throat as well as doing a biopsy for celiac disease and checking for allergy-induced gut damage.

They drew 6 or 8 vials of blood today, and we'll have to take stool samples for a number of tests checking for blood, mucous, etc. Next Monday we have to go in for a 1 1/2 hour sweat test. Then probably on Wednesday or Thursday they'll do a Barium swallow and hopefully another swallowing test (which may have to be postponed until the next week if it doesn't work out to do both). The EGD will be another day--I'm not sure when yet--and will take most of the day with prep time, the procedure, and then recovery time.

It's a lot of tests and a lot of driving--and hour each way for every appointment. But I feel really comfortable with this clinic and GI specialist. I'm just so glad we didn't settle for the other GI doc . . . the attitudes and general atmosphere here are worlds different.

I'm so much less nervous about the procedures having them done by people who seem to care about Baby E and her unique issues, and are willing to take as much extra time and trouble as is needed to be sure they're done as safely as possible. The fact that they've dealt with similar issues helps too, and it's nice to know that they'll be keeping in close touch with our pediatrician.

I found myself thanking God for leading us to the right GI specialist as I drove home.

On another note, I'm fighting a fibromyalgia/CFS/IBS flare-up so may not be posting much for the next few days. The sleep deprivation is getting to me, I guess. Now I'm getting the insomnia and the all-over severe joint, muscle and general body pain in addition to my normal fatigue and milder discomfort.

I'm sure I'll be okay if I can just manage to get some extra rest and take it easy for a few days.

I'm putting together the paperwork the GI specialist asked me to bring about Baby E. One thing they wanted was detailed records of her height and weight. I wrote up a summary of my records and then charted it.

We introduced solids between 5 and 6 months--starting with rice cereal (which contained corn derivatives) and barley cereal (which contained soy derivatives, unknown to us, and of course contained gluten also). Her growth curve went flat from that point until between 11 and 12 months.

Between 11 and 12 months was when we removed corn and its derivatives from her diet. We didn't see an improvement in her behavior until all corn and soy derivatives were removed--even the most refined "non-allergenic" ones.

I find it very interesting that between 11 and 12 months was when her growth curve started going up again.

It may or may not be causative, but the exact correlation is certainly interesting.

Warning: this post is nothing but dry technical wonderings about allergy test results. Feel free to skip it unless that sort of thing interests you.

After having an anaphylactic reaction to coconut last week, I dug out my copy of my allergy test results. When we did the skin prick tests, I knew very little about allergies and allergy testing at that point.

Looking back at my results last night, I was surprised to see that the allergist wrote down that it would require a 6/12 result to be considered a positive. (6mm wheal or welt, 12mm red area). Many allergists consider anything 3/6 or larger to be a positive reaction, but the general rule of thumb is that any reaction at least 3mm larger than the negative control is a positive.

###############

My reaction to the saline negative control on the food test was 3/9. Normally that would indicate dermographism, from what I've been reading, and make the tests much more difficult to interpret.

However, I don't think it's dermographism (a condition where a person gets a red raised welt from any scratch in the surface of the skin) because I did have several results that were truly negative, with no wheal at all.

When we did the environmental testing I had tests that registered 0/3 to 0/10 on 13 different items, so I know the positive result on saline can't be dermographism. If I had dermographism then I should have had welts on those 13 tests also. But my reaction to the saline on that test was 2/5.

In the food allergy test a month later my saline control got a wheal of 3/9. My smallest wheal (to almond) that day was 2/7.

Does that mean I'm reacting slightly to something in the saline? Or could it be that in both cases the saline control was directly below a substance I had a strong positive reaction to (on the food test the histamine and saline were next to each other)?

It seems that it would make sense to take the smallest wheal as the control rather than the saline, if the saline is that reactive but there are negative reactions with smaller wheals present, doesn't it?

The allergist said the test was negative for everything on the food test. I'm wondering if the results are even able to be accurately interpreted considering that my reaction to the negative control was a welt that would generally be considered a positive reaction.

My results on the environmental tests ranged from 0/2 to 20/35, with 24 of the 40 tests registering with a wheal of 3 or more, and 13 registering a wheal of 0. There were none that registered a wheal of 1 and only 3 (including the saline control) that registered 2. 16 of them the allergist considered positive because they had a wheal of 5mm or more. The histamine control was 7/30.

On the food allergy test, the histamine control was 8/50 and the saline control was 3/9.

My other results were: avocado (strong clinical reaction of immediate food-poisoning-like symptoms when consumed) 4/10, barley 4/7, chocolate 3/5, coconut (to which I later developed anaphylaxis) 4/5, corn 4/5, egg white 5/7, cow's milk (longstanding clinical symptoms of allergy/intolerance) 4/7, almond 2/7, hazelnut 3/6, peanut 3/5, oat 4/5, rye 3/3, sesame seed 3/5, shrimp 5/7, soybean 5/6, tomato 4/5, wheat 4/4.

The allergist (the one I really didn't like) said that the food test results were all conclusive negatives.

What does concern me a bit is that I get mild symptoms (mostly nausea/stomachache) when I consume shrimp, eggs and soy. Taking the smallest wheal (2/7 to almond) as the control would make the results for each of those foods positive instead of negative. I'm wondering if continuing to consume them frequently could be a bad idea. I'm not eating any of them currently for my nursing baby's sake anyway.

I found out this week that I do have a fairly close relative who nearly died from a seafood allergy, so I'm glad we've decided to avoid seafood for Baby E until she's older.

I have a lot of chronic symptoms that could certainly be allergy-related, and if I'm constantly consuming foods I'm reactive to, that could explain a lot of my chronic illness I would think. My official "diagnosis" includes fibromyalgia, chronic fatigue syndrome and IBS, but my symptoms definitely get worse when I'm exposed to my allergens (especially dust mites and milk).

I'm really curious what another allergist would say. It seems to me that when the negative control gets a positive result, it makes the whole test unreliable and difficult to interpret.

Purple_Kangaroo, allergic to coconut, avocado, milk, blackberry leaves, latex, many environmentals (mold, dust mites, pollen, cats, etc.) and most antibiotics
. . . Mom to 3 girls, including Baby E who is allergic to corn, soy, oats, kidney beans, apples, banana, mushrooms, mold and ???

Mom is still very weak and having severe diarrhea, but the anti-nausea drugs seem to have worked. She's home resting. We're continuing to pray for her recovery.

Mom's doctor called ahead to the emergency room last night, so she didn't have to wait a long time in the waiting room before being seen.

Dad said they saw a woman in the waiting area with possible stroke symptoms (difficulty using one side of her body, etc). She was complaining that she'd been waiting for 2 hours and hadn't been seen yet.

Dr. Flea was complaining recently about patients who abuse the emergency room. Maybe it's just that we usually have an extremely long wait here even for fairly urgent situations, but I haven't seen a lot of that when I've been to our ER. Most of what I see are cases that really do belong in the emergency room.

Obviously I'm not the best judge, but in sitting there watching and talking to the other people waiting, most of the cases I've seen were things that I would think were appropriate for an emergency room . . . an older man with heart attack symptoms, a 12-year-old who had imbibed an entire bottle of Vodka, infants with high fevers, people with broken limbs or open wounds, kids with dehydration from long-lasting severe diarrhea and vomiting, a guy brought in by an ambulance after getting drunk and breaking his neck in a stolen car (he had to wait for hours since he was already stabilized--head screwed to a metal halo), and that sort of thing.

I can't imagine that many people opt to spend hours in the ER waiting room if it's clearly not necessary. Anyone going in with something really minor is going to end up waiting all day, because they triage the cases to take care of the most serious things first. When even a broken neck or a possible stroke victim has to wait for hours, people think pretty carefully about going to the ER. I know I do.

I try to avoid ever going to the ER unless it's absolutely necessary, and I have almost never gone without being told to go by a doctor. Most people I know are the same way.

It's very nice to have the advice/on-call number available with our clinic for help with making those judgment calls. It would be more difficult for those without that service available, and especially those without health insurance.

It's too bad there's usually such a long wait, but I'm glad there's some way to get 24-hour emergency medical care here.

DH, AJ and Baby E ended up staying home today while M&M and I drove out to my grandparents' house for a brief Thanksgiving celebration. Since my mom is immunosuppressed due to a kidney transplant, she tries not to be around anyone who is sick--even if they're just getting over a mild cold, as in our case today.

I was sad to have to leave most of our family at home, on top of Sis J's absence at college, but it worked out okay. AJ and Baby E had a great time getting Daddy to play princess and paper dolls with them.

M&M and I had a good time and enjoyed a delicious meal with the extended family, then came home and had more festivities with our own family.

A few minutes ago, my sister Sparrow called to say that my mom has been violently ill ever since they got home.

Everyone else seems fine, and our family is very careful about food safety, so food poisoning seems unlikely. It's possible she picked up an intestinal virus on the airplane. She just got back yesterday from her second cross-country trip in the last few weeks to be with Sis J and drive her to doctor's appointments while they try to figure out what's making her so unwell.

Whatever the cause, Mom is really sick right now. That can quickly get dangerous for her, especially if she's not able to keep down her anti-rejection medication. I'm also worried about potential dehydration at the rate she's going.

Please keep her in your thoughts and prayers.

10:00 PM Update: They're taking her in to the ER for some anti-nausea medication and whatever other treatment she's going to need.

2:30 AM Update: Just got this e-mail from my sister Sparrow:

"2:00 AM and we're back home. They gave her an IV with fluids and anti-nausea, and that stopped the throwing up so eventually she could hold down her meds. She's very weak, but not throwing up anymore. They weren't sure what was wrong, but she didn't have a fever."

Hopefully she will be better and regaining strength by morning.

I'm thankful for many things today. I don't have the time or the energy to write about them tonight.

Happy Thanksgiving, and may God bless you all.

Thank You, Father, for all of my many blessings . . . especially for my loved ones.

I shouldn't have baked that second pie tonight. After Baby E finally went to sleep sometime after 1 a.m. I still had to take the pie out of the oven and wait for it to cool enough to put in the refrigerator. No snow here (who was it that was talking about setting their turkey soup in the snow to cool?). Oh, well.

The pies look good. Hopefully I have the recipe worked out enough now so that we'll have a good pumpkin pie for Thanksgiving.

I just wrote a note to a friend who had someone tell her that, even though she lost her child, she should at least be thankful that she got to experience being pregnant and having loved her child for a little while. That some people never even get to experience that.

Although it may be true on some level, that sort of thing isn't usually particularly helpful when spoken to someone who is deeply hurting. As MB said, you can't compare pain.

#############

I've had a few people tell me that they understand what we've gone through with Baby E because their baby had colic and cried a lot for 6 weeks, or 9 weeks, or whatever.

I think, "9 weeks. 9 weeks is such a short time." But I don't say it. I know that 9 weeks of inconsolable screaming seems like an eternity. Even one day of it seems like an eternity.

I just say, "It's hard, isn't it, when your baby cries and you can't comfort them." And I feel for them. I know it was hard for them.

Then I get an e-mail from someone who tells me her child was in a level purple 90% of the time for 3 years. Three years. Or more. And our little troubles seem so small in comparison.

What I try not to think about is the various possible diagnoses. I try not to think about the possibility of Baby E's illness or whatever it is becoming truly long-term. The possibility that it could get worse. The prognosis with some of the things they'll be trying to rule out for Baby E. That, for some parents, their children never do get better. That sometimes kids get really sick. That sometimes children go.

I try not to think about a scenario where E has a very serious condition that's not going to go away. But those other parents, they have to face that. And, somehow, they survive. Just as we would if we had to face it, with God's help.

But you can't compare and contrast things like that, can you? You just know that nobody else can really understand what you've experienced.

To those who are hurting, all I can say is this: I can't truly understand your pain, but I do respect it. And I care.

I had just barely hung up the phone after fielding a phone call asking for donations when it rang again.

I almost didn't answer it. I wanted to take a shower, and my window of opportunity was likely to be small with Baby E napping and the older girls watching a short video. I thought about just letting it ring while I got in the shower.

Just before the phone machine picked up, I answered. "Hello?"

"Hello, may I please speak to the parent of Baby E?"

"Yes, this is her mother."

"This is the pediatric gastroenterology department at [excellent teaching hospital in neighboring state]. You have an appointment in mid-December with us. But we were wondering if you would like to have your daughter seen sooner?"

############

It took me a minute to find my voice. Then I had to stop myself from shouting into the phone.

"Yes! That would be wonderful. We would really like to have her seen as soon as possible."

"How about this coming Monday morning?"

I must have thanked her a dozen times.

We're seeing a different GI specialist than we'd originally been scheduled with. Actually, I'm not sure, but I think the person we're seeing on Monday might be the nurse practitioner that used to work with Dr. B. The one that met with him on her day off to discuss Baby E.

Either way, we're getting the ball rolling.

I guess it helps to have an excellent pediatrician pulling strings for us.

I also talked with the naturopath today and she said that she has seen similar cases before, and that she definitely thinks there's more than just allergies going on (although the allergies are an issue also). She suspects a Candida or bacterial overgrowth, an autoimmune disease (which could be celiac or something else), or some combination of the three.

The test we sent off a few days ago for yeast and bacteria levels can take weeks to come back. So we're probably going to go ahead and start treating for the Candida just in case that's contributing to Baby E's issues. Even if she does turn out to have something else going on, the treatment for Candida could help, since Candida overgrowth is often present along with autoimmune and digestive disorders. If not, it certainly won't hurt her.

The naturopath also thought doing more allergy testing would be a good idea once we rule out a few of these other possibilities. She can order the blood tests for us.

I'm so happy that we may finally be getting closer to answers and solutions.

Meanwhile, let's hope the whole family gets over our colds quickly. I'd hate to have to miss Thanksgiving festivities because of winter sniffles and coughs. My mother's status as a kidney transplant recipient on immunnosuppressants makes even a cold problematic.

Baby E is getting so good at communicating. She has fewer times lately when she's just crying and whining and we can't figure out what's wrong.

Last night she woke around 1:30, whimpering softly and calling for "Mama". But she didn't cry much. She just wanted me to hold her.

She wasn't hungry; she just didn't feel good and wanted Mommy nearby. She couldn't sleep. Who could blame her for not wanting to be in pain alone in the dark?

Eventually I took her back to our bed.

Lying beside me, she still couldn't sleep. She would sigh, and take my hand to put it on her belly. Then she'd look at me solemnly and say, "Ow."

I'd say, "Your tummy hurts? I'm sorry. Do you want me to rub it for you?"

She'd nod and relax a bit as I gently rubbed her belly. Just having me understand seemed to help more than the actual rubbing. I was glad to be able to comfort her in some small way.

I rubbed her tummy until 5 a.m., with both of us dozing off sporadically. Then she nursed, and DH took her downstairs for a while to give me a break. They both fell asleep on the couch.

Before bed last night, Baby E decided she wanted to watch a video. She went to the cabinet, opened it, and carefully chose one. Then she took it to DH, who was sitting on the couch.

She toddled as quickly as she could across to the VCR. Looking over her shoulder at DH, she reached up as far as she could toward the slot, urging him to put it in.

When he didn't respond, she whimpered, then signed "please" and made her best pleading puppydog face.

Now, who can resist a performance like that?

When she's hungry or thirsty, Baby E goes to the low cupboard where we keep the kids' dishes. She'll get a dish and take it over to the refrigerator.

There, she'll either hold a cup up to the water dispenser or try to open the door and gesture toward the item of food she thinks she wants to eat.

The last day or so she's suddenly become ravenous again, eating almost constantly. She says and signs "more" a lot.

Baby E is using a lot of words and hand signs. She loves being able to communicate so clearly.

I'm enjoying it, too.

Baby E, 2 1/2 months old, almost 15 lbs.

Baby E, 15 1/2 months old, 22 lbs. and much taller.

Exact same outfit, size 70. My favorite brand.

My soap substitutes seem to be working beautifully. I'm so excited.

I'm really liking the Kiss My Face olive oil bar soap. It's gentle and feels pleasant on the skin, yet it does the job of getting things clean. Best of all, it doesn't make me itch.

A tablespoon or two of equal parts baking soda and borax seems to work no better or worse than the detergent we had been using in the dishwasher. It's certainly cheaper and safer.

For laundry, I made a liquid laundry detergent out of a cup of soap flakes (half a bar of my olive oil soap, grated), 1/2 cup borax and 1/2 cup washing soda, mixed and heated with water.

##################

That recipe made about two gallons of soap. I decided to go with the liquid because we use cold water to wash most of our clothes and I wanted to make sure it would dissolve well. Making the laundry soap was quite easy. It's super-cheap and environmentally friendly, too.

DH bought me some white wine vinegar (mmm, does it smell good!). I'm using a soup ladle to spoon the soap into the washing machine's dispenser and then filling the fabric softener dispenser with vinegar.

I'm on my 4th load of laundry and so far it seems to work very well. The clothes come out looking and smelling clean--maybe even cleaner than with the regular laundry detergent. Maybe it's my imagination, but the clothes feel slightly softer to me with this cleaning method.

The real test will be tonight, when I wash a load of diapers. Supposedly using soap-based cleaners is a no-no for cloth diapers, but I'm going to try it anyway. Hopefully the vinegar in the rinse will help keep it from building up any residue that will hurt the diapers' absorbency.

As seen at Following Frodo:

Apparently it's delurking week.

If you feel like delurking, just leave a comment here, there, or anywhere.

If you don't know what to say, you can just leave a blogstone (the invention of PeripateticPolarBear): (O)

If you don't feel like delurking . . . well, don't.

Of course I like it when people comment. But if you just want to read without letting me know you're here, that's okay too.

Baby E and I stayed home from church this morning because neither of us was feeling well, though for different reasons.

It was nice to sleep in. We didn't get much sleep last night, and we both fell asleep again this morning while she was nursing. We slept until after 11.

Baby E hasn't slept well at all the last couple of nights and has been lethargic & fussy more during the day. The runny nose and congestion that she's had since Oct. 16th (incidentally, the day we reintroduced gluten) is worse. Mostly she's just hoarse and uncomfortable.

It's impossible to tell whether it's an illness or allergy-related at this point. Really, she's had some degree of stuffy nose much of the time since her birth.

DH stopped on the way home and bought washing soda and borax for me. I'm going to cut up a bar of the olive oil soap and mix up some homemade laundry detergent to try, using one of these recipes.

I think I'm going to take the leap and try making my own soap with lard and a safe oil (apricot oil sounds nice) if I can find some lye . . . I'm thinking the craft store might be a good place to look.

It looks like allergies might have been the source of a lot of the strange dizzy spells, nausea and other intestinal symptoms, odd heartbeat sensations, extreme fatigue, itchiness, lump-in-the-throat sensations, etc. I've been having lately.

Last night I unpacked a few boxes of china and then loaded the dishwasher, which involved exposing myself to dust mites/mildew and touching a container that had held coconut milk. I had felt great before that, but within minutes I felt really awful.

I'm thinking if I can just figure out and avoid all my allergens, my overall wellness might greatly improve.

I made pumpkin muffins with no oil (and no oats!) this week. It's the first thing in a long time I've baked that Baby E ate willingly and that didn't give me a stomachache.

Just taking coconut and palm oil out of our life is already making a difference. I'm seriously considering getting blood tests to check for IgE and IgG allergies, testing for over 100 foods at once. I'm pretty sure Baby E may have other allergies we haven't yet identified.

Maybe we'll get the IgE testing done for the whole family. My recent experiences with coconut have convinced me that I initially had a low-grade allergy that gradually increased in severity with continued exposure until it became anaphylactic.

Because it's such a prevalent substance, like corn, it was hard to pinpoint the cause of the reactions. I think if I'd realized and started avoiding it sooner, I might have felt a lot better and avoided developing anaphylaxis.

Everyone in the family has chronic low-grade symptoms that could possibly be allergy-induced (M&M's frequent stomachaches and complaints of itching, for example, and AJ's sporadic diarrhea and bouts of sudden, extreme tiredness). Since allergies are so prevalent in both the immediate and extended families, some basic screening for all of us might be a good idea.

Purple_Kangaroo, allergic to coconut, avocado, milk, blackberry leaves, latex, many environmentals (mold, dust mites, pollen, etc.) and most antibiotics
. . . Mom to 3 girls, including Baby E who is allergic to corn, soy, oats, kidney beans, apples, banana, mushrooms, mold and ???

Andrea at A Garden of Nna Mmoy has been talking about discrimination in the "mommy blogging" world.

She believes that blogs by parents of children with highly visible special needs get less traffic than blogs by parents of "normal" children.

I think there is some truth to what she is saying about people shying away from things that make them uncomfortable--and certain disabilities or health issues making people more uncomfortable than others.

#######################

Baby E's issues are pretty mild on the discomfort factor, I think. She looks and acts the way most children do most of the time. A child who had a very atypical-looking face, though, might be harder for some people in the general population to connect with.

It shouldn't make a difference, but for some people it probably does.

Even with our relatively mild issues I know that this blog has been more dark and intense lately. Some people have found it too intense to continue reading.

It doesn't offend me if people find my blog too painful and intense right now. Even I find it so sometimes. I'm not going to change what I'm writing for the sake of peoples' comfort levels, although I do wonder if I should try to make it less monotonous and more upbeat. But the intensity is honest, and for that reason I think it's important not to try to dilute it too much. Our life is intense right now, and that's the truth of it.

Though some people may be driven away by such intensity, other people may be drawn to a blog by that same intensity.

Moreena's blog is always on my short list. Even if I only have time to hit a few blogs, I always click through to hers with my heart in my throat, hoping Annika is okay.

My need to check on her and make sure she hasn't taken a turn for the worse makes me read that blog more often than I read others--precisely because of the uncertainty in Annika's life and the heartwrenching way Moreena writes about it.

Yes, it's often painful. But because of the way Moreena writes about that pain, and because organ transplant happens to be an issue close to home for me (my mother is a kidney transplant recipient), Moreena's family has entwined itself in my heart.

However, I think there's a slightly different element at play when people avoid a blog because they're uncomfortable reading about a child that looks and/or acts significantly different because of a disability or medical condition.

What if, for instance, people would find a blog by a parent of a child with Cerebral Palsy uninteresting or uncomfortable simply because the child has CP, regardless of the other topics covered, the style of writing, etc? If people shy away from it because being confronted with a condition like CP makes them uncomfortable? That would seem to be a problem.

I do understand that particular issues and situations are more uncomfortable and less engaging to some people than others. To some extent that's okay, I think. It's natural to be uncomfortable with anything that's unfamiliar.

On the other hand, if people respond to anything uncomfortable by avoiding it instead of leaving themselves open to learn about and engage with it, then that's a problem.

Being uncomfortable in itself (especially initially) isn't necessarily bad. But if they consistently respond by refusing to interact with anything uncomfortable, that becomes a matter for concern. Maybe not in any one particular instance--but any time a tendency to respond to differences with avoidance becomes a ruling force for someone's behavior in general, it does become a problem.

When society as a whole (or even any significant chunk of society) behaves that way, then it really becomes serious. That's when we end up with horrible results like a group of people who want to institutionalize or segregate anyone who is different in order to avoid having to interact with them.

It seems that it would be valuable to look at why people might be uncomfortable with an avoid differences, and how to change that.

To some extent, I think familiarity is key. People need to be exposed to the things that make them uncomfortable, see others treat them as normal, and see positive interactions modeled. I think in most cases people don't intend to respond by withdrawing; they simply haven't yet been exposed to these differences enough to become comfortable with them.

I work to teach my kids to have matter-of-fact attitudes and comfortable interactions with people like a little boy we know with cerebral palsy, a friend with Downs Syndrome, and a man at our church with no legs. I am comfortable around them myself and provide opportunities for my kids to learn to be comfortable around them, too.

I'd like to do more things like take the kids to visit nursing homes and other places where they'll come in contact with people who are different and maybe even difficult to be around.

When I was a kid we visited my great-grandmother in a nursing home every week, and would pop in and say hi to a few of the other residents too. On occasion we did other things like that.

Once we visited a home for special-needs kids and made cards for them. I remember the boy who was the recipient of mine had Down's Syndrome, and his exuberant reception of my card was a little overwhelming and uncomfortable, but at the same time very wonderful. I must have been about 9.

I wonder if there would be a way to help create familiarity and understanding in the blogging world. Sort of like having a gathering in your home that includes people from various groups--just because they are all friends of yours, but with the side benefit of allowing people who may not have been in the same room with a different type of person to begin to develop some familiarity and comfort with them, partially through seeing how you and others interact with them.

For example, what if a number of bloggers made it a point to occasionally post about and highlight the blog of someone dealing with a more unusual issue? Do you think that could be done in a sensitive and effective way?

It seems that just simple things like that could make a difference.

Reading a well-written story on a blog about how the author had a playdate with a friend who has a particular condition would be a very natural and normal way for that blog's regular readers to get a gentle and matter-of-fact introduction to that person and condition. It could help readers of that blog to see the person with the condition as a person and not as their condition.

Even reading that a blogger you are familiar with reads and enjoys a blog by someone who is dealing with an unfamiliar situation would help to normalize that difference, I think. Just reading about someone else's life can be invaluable in learning to step out of your own shoes and understand someone else's.

Andrea also suggested highlighting bloggers from marginalized groups or using a guest blogger type of feature to help those bloggers gain a wider audience.

There's a forum set up at thewholemom.com to discuss the issue of representativeness in the momosphere. Andrea asks, "What things can mom bloggers do to ensure that a mom from any demographic group has an equal shot of getting into the A-list, assuming they want to?"

Feel free to jump into the conversation. It should be interesting.

Baby E was asleep tonight shortly after 8:30. My guess is that she's going to think this was her second nap of the day, but maybe she'll actually be asleep for the night before midnight for once. That would be very, very nice. Hey, it's not too much to hope for, is it?

DH has been doing so much work around the house, taking up a lot of the slack from my work doing research, taking care of the kids, doing extra cooking, and trying to figure out how to help Baby E. That's so wonderful of him. Thank you, DH.

This morning I washed my hair and brushed my teeth with baking soda. It worked pretty well, actually. My head was significantly less itchy after using the baking soda/lemon juice mixture. Just the simple act of taking a shower and washing my hair made me feel so much better.

Tonight I went shopping and found a Thanksgiving gift for Sis, so I'll be able to mail it to her in time for the holiday. It will strange having her gone for Thanksgiving.

Speaking of the holiday, we're having a large group of DH's family over for dinner the day after Thanksgiving. DH's mom sweetly volunteered to bring the food. She's such a great mother-in-law.

But as hard as it is even for me to cook reliably safe food for our dietary needs, it seemed safer for me to do the cooking, or at least the bulk of it. With a group that size it would be nearly impossible to keep crumbs from being scattered around.

The idea of contaminating our home with allergens (when Baby E still picks up things off the floor to put in her mouth) is something I don't want to deal with right now. It would be stressful beyond belief trying to keep "unsafe" food from contaminating "safe" foods and areas of our home in that type of situation.

Last time we had a group of people eating here (back when E had only two known allergens) we tried to have separate safe and unsafe elements of the meal. Baby E ended up with a pretty severe reaction just from the inevitable cross-contamination that takes place when serving two drippy/crumbly dishes near each other.

I think MIL is still going to help with some of the food--perhaps something like a fruit and vegetable tray that won't carry too much danger of ending up with traces in Baby E's food. I'll just feel so much better if the bulk of the meal is cooked here with our verified safe ingredients.

I'll enjoy cooking for the event, but I haven't even started planning the menu yet. Turkey noodle soup, perhaps? Or just a big turkey cooked in an oven bag with some root vegetables? Or maybe everyone will be tired of turkey by then, and I should just do a big beef roast? I think I'll make the gluten-free chocolate cake that's always a big hit for dessert.

I'm making a pie and a side dish, to take to my grandma's house for Thanksgiving, along with some safe cranberry sauce and a few other things. Grandma went out of her way to find a free-range organic turkey and will be cooking it with only seasonings I've okayed, and providing carrots and potatoes from her garden prepared with nothing but water and safe salt. She's stressing about it, but I think it will be fine. I'll be bringing most of the other food Baby E, Little Sister Sparrow and I will be eating.

I just bought a vegetable called kohlrabi, and some fennel root. They looked like interesting vegetables to try, but I'll have to look up instructions for preparing them. Has anyone cooked these before?

Best of all, I found some bar soap made from olive oil! Hooray!

In the process of reading soap labels I discovered that, yes, getting coconut-containing soap on my hands does make them itch. Skin contact with coconut did not, however, give me an anaphylactic reaction. This is a very good thing.

There is now an epi-pen with my name on it in the house.

Baby E's nose itches. She's scratching it until it bleeds the way she used to do with her ears before we discovered the corn allergy.

I made grainless crackers today with tapioca flour and palm kernel oil. The low-grade allergic reaction I've had for the last few days got worse again (though not severe) after I ate them. I thought it was really strange that they seemed to bother me after my going out of the way to make sure there was no coconut in them.

Baby E got excited at the way they looked, grabbed a cracker, eagerly took a bite, and then suddenly threw it as far as possible the moment it touched her mouth. Then she started making "ack" noises and trying to spit out the tiny crumb that had actually contacted her tongue, raking at her mouth with her hand.

I was starting to wonder if the tapioca was a problem now, on top of everything else. Then I found out that the oil palm, although not the same exact plant as the coconut palm, is in the same biological family as coconut and date palms. So now I'm wondering if I should be avoiding palm oil and dates as well.

Thankfully, Cacao (chocolate) is not in the same family even though the name is very similar. I'm inordinately thankful for that.

This week has been good. Baby E hasn't gotten above a level orange all week. She's still having worrisome symptoms, but at least she's not miserable. She's having lots of happy moments and things have been relatively peaceful.

Last night we went to a gathering at a friend's house, to see some mutual friends who are home on furlough. My friend JT was the most thoughtful and considerate hostess ever. She made sure to vacuum really well in the room the kids would be playing in, and then told everyone to be sure not to bring any food into that room.

####################

We brought safe food for Baby E and me, and DH and I took turns keeping track of Baby E while everyone was eating, to make sure she didn't get any crumbs on her hands or in her mouth. JT even talked to everyone about washing their hands after eating before touching Baby E. It worked really well.

All three of our kids had a marvelous time, and Baby E didn't end up with any reactions. In fact, she was in the best mood during and after the party than she had been all day. I'm glad the outing was a success--maybe a few experiences like that will make leaving the house a little less stressful.

The biggest thing I'm struggling with this week is adjusting to the idea of cutting out another major food that's found in almost everything. I haven't even started researching it much yet, other than reading ingredient labels. I expect the list of products and ingredients that can be coconut-derived rivals the soy list, and perhaps even comes close to the corn list. I know all those sodium laurel/laureth sulfate-type ingredients in cleaning products, soaps and cosmetics are often coconut-derived.

It doesn't make sense, I know, but at this point I almost feel that I don't want to know. I find myself fluctuating between denial and despair if I think about it, so I've been trying to just not think about it. That doesn't make a lot of sense, I know--especially since I still feel like I'm having a fairly constant low-grade allergic reaction going on. Of course, with the number of known environmental allergies I have it's difficult to poinpoint a specific trigger.

I can't be sure, but it seems that my itchiness and other symptoms get worse every time I wash my hands. The soap, of course, has coconut derivatives. If I rub my eyes they itch and burn. So for now I'm just trying to use the soap as little as possible and rinse very well afterwards.

If I start having more really obvious and scary reactions to things with coconut derivatives, then I'll have to take it more seriously.

Meanwhile, I haven't washed my hair since I discovered the coconut allergy, because my scalp still itches and burns and all the shampoos in the house seem to have coconut derivatives in them. I had noticed quite some time ago that my shampoo was making my scalp itch, though I hadn't figured out why. Ever since I had constant eczema on my scalp as a child (until we cut out milk), my head seems to be the first place dermatological allergic reactions show up. I'm going to have to find some solution for that today, even if it just means rubbing baking soda and lemon juice in my hair and then rinsing it out.

Unfortunately, the fact that I had an anaphylactic reaction to coconut oil, which is likely to have extremely low levels of the allergenic proteins (although there are cases in the medical literature of anaphylactic reactions to coconut oil), probably means the sensitivity level is pretty extreme. Dermatological reactions to coconut derivatives in soaps, etc are actually much more common than reactions to ingesting coconut.

I wish I had an allergist I could trust to give some guidance about it. I think I'll make some phone calls about that today.

It's also becoming more urgent to see a nutritionist, I think, and figure out a plan for what we can eat that will meet our nutritional needs while being safe. However, since we still don't know for sure whether Baby E is going to be able to eat gluten or not, or if there are more allergies we haven't yet pinpointed, we don't really have all the information we need to make such a consultation effective.

Baby E perked up quite a bit after lunch, and is now napping.

I realized Baby E has been wearing the same dress (yes, exactly the same dress) as some of my favorite pictures of her from shortly after she started sitting up. So I thought it would be fun to do a comparison picture.

Baby E at 6 months (more photos here).

Baby E at 15 1/2 months.

Baby E has learned a couple of new hand signs lately--can anyone guess what these are?

A clue: one of them is her version of the sign for her favorite food--the one thing she'll almost always eat.

Baby E has been feeling more under the weather the last few days--more often in an orange level. She spends a lot of time just kind of sitting, wanting me to hold her. She seems so tired, but I'm having trouble getting her to nap.

She has been sleeping through the night most of the time, though. she goes to bed late (usually between midnight and 2am), but then she doesn't wake up until sometime between 6 and 8 to nurse, and goes back to sleep until 9 or 10.

Even when she's feeling well, she still fluctuates constantly between relatively normal BMs, piles of undigested food, and explosive watery diarrhea. I'm so glad she's still nursing and getting some nutrition that way. The last few days she's wanted to nurse every hour or more through most of the day.

The most frustrating thing is trying to get her to eat. She'll make her "food" sign and give all kind of indications that she's hungry, but then will eat none or only a bite of what I offer her.

Even just trying to figure out what I can offer her is getting more difficult. Do I give her rice, even though she doesn't want to eat it and seems to react poorly to it? How about grapes? She'll always eat grapes, but has gotten severe diarrhea after eating them the last several times I gave them to her.

But I can't just not feed her anything she seems to react to, because she seems to react to everything lately. At this point I'm not sure there's much of a real connection between what she's eating and how she feels, as long as we avoid her known allergens.

I have her urine sample all packed up and frozen, labeled and ready to go to test for candida levels. The naturopath really seems to think that may be the answer to all or most of E's issues. It's worth a try, anyway.

By the way, I did find the napkin with the two allergist's names written on it. As soon as I saw it I remembered how I ended up with Dr. D. When I called the office where the first allergist on the napkin worked, they told me he didn't have any openings but that they had a pediatric allergist (the other doctor didn't work so much with kids) and that he had an opening.

Phantom Scribbler kindly did some googling for me and noticed that there was another allergist who shares a practice with Dr. "nobody's allergic to rice" that sounds like he could be promising. I may see about interviewing him. If that doesn't work I'll probably see about getting someone at the excellent teaching hospital in the next state, where we're going for the pediatric gastroenterologist. If all else fails, I suppose we'll go back to Dr. "nobody's allergic to rice."

This morning I made some completely grainless crackers out of tapioca flour. Baby E ate a few of those along with a slice or two of pear. The older girls and I liked them, too. I'll post the recipe on Restricted Gourmet later today.

At least there is one thing she'll almost always eat. I'm going to go cook some for her now. Can you guess what it is?

Bedrest and Beyond has a couple of really cute pictures of Baby E and the adorable-even-when-screaming Baby Dorothy here.

There's a two-way left-turn lane in the arterial road connected to our little avenue. The road is a busy one, so I often use the left turn lane when turning left out of our street. Having to think about only one lane of traffic at a time can be helpful when traffic is heavy.

Last night I made a left turn into the center lane, then came to a full stop. I waited for an oncoming car to pass before pulling into the farther lane.

The other driver honked crazily at me 5 or 6 times as he went by.

"Strange," I thought. He must not have realized there was a left-turn lane there. He must have thought I was going to pull out in front of him."

Obviously I hadn't even come close to pulling in front of the guy. It was too bad I'd startled him, but it was, after all, a left-turn lane. I pulled out behind him, leaving plenty of distance between our cars.

But the other driver wasn't finished with me yet.

###############

He slowed down as the road divided into two lanes, letting me catch up. I couldn't hear what he was yelling at me, but I could see him wildly gesticulating behind the rolled-up window. I shrugged. It was a left-turn lane. I'd done nothing wrong.

As I turned right at the next intersection, he started honking at me again, yelling and gesturing angrily after me. For a moment I thought he would follow me, but he drove off in another direction, still honking.

I found myself rolling down the window and yelling back at him. I never do things like that. I hollered, "There was a left-turn lane!!!" The words clinked to the ground and rolled away like a dropped penny, unregarded and worthless. There was no way he could have heard and understood them. Even if he had, what difference would it have made?

I found myself wishing I could have communicated fully and instantly with him somehow--maybe through gestures or mind-reading. If I could have explained, then maybe he wouldn't have been so angry.

He would have understood that I wasn't endangering him; wasn't making a stupid driving move out of carelessness. He had probably misinterpreted what was happening in the darkness. He'd thought I was trying to pull out in front of him; cutting him off.

If he'd just had a clearer look he would have seen the left-turn lane. He would have seen me turning purposefully into it and waiting carefully until he was well past before pulling out into his lane.

Then he wouldn't have been angry. He wouldn't have thought I was a stupid, careless driver.

Why do I care so much how a complete stranger feels about me?

I always think that if I can just communicate with someone, things would be better. If I could just explain the right way, use the right words, paint the right pictures--people would understand. They would, if not agree with me, at least understand and respect my reasoning. If I could just communicate enough, everything would be okay.

Life doesn't work that way, though, does it? Communication is a good thing. Communication can be helpful, but even effective communication doesn't necessarily solve things. There are three parts to communication--the sender, the message, and the receiver. If any of those are disrupted, communication can't happen properly. When the parties aren't willing to listen and respond to what the other is saying, what happens can't really be called communication.

But even effective communication doesn't solve everything.

I told my husband about the incident later, marveling at how angry the other driver had become.

"There's a left-turn lane," I told DH. "It's for making left turns, and I was using it to make a left turn. I don't know what his problem was--couldn't he see that there was a left-turn lane there? I wasn't going to pull out in front of him. I was just turning into the left-turn lane."

"Well, no wonder he got mad," DH said. "That lane isn't for turning into. It's for turning out of."

"You can't turn out of it without turning into it first," I retorted. "It's for making left turns. I was making a left turn."

"That's not a left-turn lane there," he insisted. "The lines are solid. Besides, you're not supposed to turn into a left-turn lane from an intersection."

"No they're not. The outer lines are solid and the inner lines are dotted. It's a left-turn lane, and you can turn left into it from any direction."

"It's not a left-turn lane. You look next time you drive out there. The lines are solid."

I looked today.

We were both right.

The double yellow lines are solid on each side for about a car's-length from the intersection before the inner line becomes a broken line to indicate the left-turn lane.

I did find several pages and traffic laws that indicate that two-way left-turn lanes are for use by vehicles turning out of or into an arterial road. But I couldn't find any that specifically dealt with turning into a part of the left-turn lane near an intersection when the end of the lane closest to the intersection is designated by solid yellow lines.

What do you think is correct?

I keep thinking about those two phone calls with the allergist's nurse.

When I called this morning and described my symptoms to the nurse, she was very concerned. She said it was "about as bad an allergic reaction as you can get" and she was certain the allergist would want to see me ASAP and get me a prescription for an epi-pen immediately.

Then she called back several hours later. Her whole tone was completely different as she said he didn't think I needed to be seen or that an epi was really necessary, though he COULD write me a prescription if I wanted him to.

And that some time in the future we could do a skin test to see whether I'm really allergic to coconut or not.

I am pretty certain that as soon as the allergist heard my name he said something like, "Oh, that crazy lady. She's probably just imagining the whole thing. Just say anything to get her to calm down and go away."

Urgh.

##############

This is the same allergist who told me that adults don't get eczema from milk and my reactions to dairy could not be from consuming milk, either as an allergy or even an intolerance--even though it goes away if I stop eating dairy products.

That I couldn't possibly be allergic to avocado beause my skin test was negative and my symptoms atypical, so the immediate vomiting and diarrhea I get every time I consume avocado must be a coincidence. (No, not an intolerance; a coincidence.)

That my swelling-to-3-times-normal-size reaction to blackberry leaves (whether I get poked by the thorns or drink the leaves in a tea) must be toxin-related and not actually an allergy. Even though he didn't actually test for that one.

He also said that some of Baby E's positive allergy tests must be false positives because it's almost unheard-of for a child to have more than 4 food allergies. He said that most of her other reactions to her allergens "aren't really allergic reactions." Even though they happen consistently within 15 minutes of her consuming foods she tested positive to on a skin test. "Diaper rash isn't an allergic reaction." "Some babies just cry a lot." "The diarrhea is probably just a virus." On and on ad nauseum.

He has to admit that she's probably at least mildly allergic to corn and/or soy, because of the combination of positive skin tests and the fact that she broke out in a full-body rash that one time when she dumped the cracker crumbs over herself.

But he insists that the fact that her welts weren't very big when she tested positive on the skin tests means that she's "not very allergic" to any of those things, if at all. Certainly not serious enough for him to bother trying to find an antihistamine without those ingredients.

When I told him that she had tested allergic to oats, he asked what her reaction to them was. I said that I'd never really been able to get her to eat them--she spits them out and rakes at her tongue as soon as they touch her mouth, even if she'd initially approached the food eagerly based on the way it looked.

He said, "See--that's what I'm talking about. A false positive. If she won't eat them, you can't tell whether she's allergic to them or not, now can you?"

I said that she definitely seemed to react to mushrooms, and he asked what her reaction to them was. I said that she acts like she's in pain, flails and screams, and he said that probably wasn't an allergic reaction.

I so badly wanted to be able to trust him and have a good working relationship with him. I really tried to like him. I did like him, personality-wise.

Switching doctors is something I find terribly embarrassing and uncomfortable, for some reason.

There are exactly two pediatric allergist practices in my town. The other one houses the doctor who refused to test Baby E for allergy to rice because "nobody is allergic to rice".

Meanwhile, Baby E is still gagging and spitting out rice and then raking at her tongue if it gets in her mouth. If she does eat some, it comes out within the hour looking exactly the way it did when it went in, accompanied by tarry-looking or mucousy residue. Maybe she's not allergic to rice--it's highly possible that there is some underlying problem that's causing this, and not the rice. But it would have been nice to at least see what the test said. Also, she hasn't had rice for about a week, and she hasn't gone higher than a level orange for about a week either.

Can you hear me banging my head against the wall from there?

Even Dr. "Nobody is allergic to rice" would be a huge improvement over Dr. "You're not allergic to anything. Nope. Nothing. Except those environmental allergies; yep, those are really bad. Environmental allergies are real. Environmental allergies are serious. Food allergies aren't, unless you get hives or actually stop breathing or something. You're just imagining the food allergies. Most 'food allergies' aren't real."

Dr. B the pediatrician had initially recommended two allergists. One was Dr. "nobody's allergic to rice" and another was a doctor that used to work with Dr. D. I'll have to look and see if I can find the paper towel with the two names he scribbled on it. I'm sure I still have it somewhere.

Meanwhile, I'm seriously fighting the urge to eat some coconut just to see if it's really all that bad. Don't worry; I won't. But I think about it.

Then I notice that my throat still feels like I screamed for 3 hours at a sports event and my scalp still itches and burns, and the impulse goes away.

The allergist's nurse called back. She had talked to Dr. D and her tone was quite different this time.

He didn't feel that I needed to be seen, she said. At some time in the future we could test for coconut allergy if I wanted to. Not right away, though. He didn't think an epi-pen was necessary, but if I wanted him to he could phone in a prescription.

He suggested Aquaphor for my chapped lips.

I told her the chapped lips were the least of my worries. The symptoms like itching and tightess in my throat worried me a lot more than any chapped lips.

################

Honestly, I got the impression from the nurse that he didn't really believe I'd had an allergic reaction, or that I could know it was from the coconut oil.

It feels like he diagnosed that I didn't really have an allergic reaction without seeing or talking to me.

But I know I did.

I still itch.

I don't make this stuff up or imagine it just for the fun of it. Do you think I want to be dealing with all these allergies? It's not like I sit around thinking, "Hmmm, what can I do to make my life more difficult and uncomfortable today?"

As I said to my mom the other day, "How can you have an allergist who doesn't believe in allergies?"

Dr. B, Baby E's pediatrician, called this morning. He said that he had put together a packet of information about Baby E and was going to give it to the nurse practicioner that worked with the GI specialist.

She's coming all the way over here on her day off to get it and will review it herself and then try to get us an earlier appointment with the GI specialist.

What an amazing doctor and nurse. I'm glad there are health care providers like that in our world.

Also, I talked to the nurse at the allergist's office and she told me that the allergic reaction I had last night was "about as bad a reaction as you can get" and that I most definitely need a prescription for an epi-pen, immediately.

The allergist may also want to see me today, which would mean I'd have to change my plans to go visit my grandparents and drive over to Neighboring State instead. Just what I wanted to do with my day today. I'm hoping he'll be willing to let me wait to see him until he's back in my town in a few days--he rotates between several different clinics.

So that's what an anaphylactic reaction feels like, I guess.

What really scares me is that I'm pretty sure Baby E gets all or most of the same symptoms. She just doesn't have the words to tell me it's hard to swallow or that she itches. All she can do is grab at her mouth and head, flail around, and scream.

Well, I did end up taking the Benadryl last night. I don't like to take it because it makes me so tired and grouchy the next day, but the coconut reaction just wasn't going away.

The hot dizzy feeling and eyelids puffing up were what finally made me go ahead and take the Benadryl--children's dye-free bubblegum-flavored liquid, since that's the only one that's corn-free. At least we had that in the house.

It helped right away with the itching and some of the other symptoms, but it made the throat symptoms worse. My difficulty swallowing became worse, to the point where my throat was literally making strange squeaking and gulping noises when I swallowed. I got slightly hoarse and started coughing dryly.

I don't know if it was because the benadryl dried out my throat or if it just wasn't working yet or what, but it scared me enough that I called and had a doctor paged so I could ask if I needed to be heading to an emergency room.

###############

By the time he called back 10 minutes later it was already getting better, so I ended up just going to bed. I woke DH up first, and told him that if I started coughing uncontrollably or having difficulty breathing he would need to take me to the ER. He mumbled, "Oh, okay" and rolled over to go back to sleep.

I know he would have gotten up if I'd really needed him to, though. Thankfully, I didn't end up needing him to wake up all the way.

Now I'm groggy and tired, but the sore throat I've had for a week is much better. I'm still congested and the muscles in my throat feel strained, though, like they do after yelling a lot at a sports event or coughing too hard.

I had a lot of the same symptoms Baby E seems to get, I think. She always acts like her throat/mouth, ears, nose and head are bothering her when she has a reaction. I got itching in all those places plus a colossal headache and the feeling of my throat constricting. My stomach reacted immediately, as hers seems to do. This morning I have diarrhea, too.

I almost wonder if this happened partly so I would understand Baby E better and be able to verify that many of the symptoms she gets could be related to an allergic reaction. I never really thought I'd be thanking the Lord for an awful allergic reaction, but in a way I am glad I experienced it.

I'd prefer not to have allergic reactions, but I do appreciate that this one helped me understand Baby E better. None of the symptoms were things that would have been particularly apparent to anyone observing--if I'd been a baby I'm sure I would have been screaming and thrashing around the way E does, with little or no indication why.

Now I'm thinking I should probably call the allergist and ask about having an adult-dose epi-pen prescribed, just in case. I wonder what he'll say?

Thanks to a painful case of chapped lips, I managed to discover the cause of many of the strange and too-frequent symptoms I've been having lately.

Since all the lip balms commercially available have corn and soy ingredients, I decided to play it safe and use coconut oil instead.

The first few times, I noticed that the itchy throat I've been having lately was worse but didn't think much of it. "Boy, mold must be high today or something . . . "

By yesterday I was thinking, "Hmmm, that's funny . . . it seems like that coconut oil is making my throat and mouth itch."

The lump-in-the throat feeling, the sensation of my heart beating faster, the slight shortness of breath, the scalp and general skin itching all definitely seemed worse after consuming the coconut oil. It was subtle enough, though, that the cause-effect thing didn't shout at me right away.

The symptoms got worse every time I salved my lips. By this afternoon it was a much clearer connection. It had quickly become annoying enough that I stopped putting the creamy white oil on my mouth. It was obvious by that point that the coconut oil was making my mouth & throat itch. I decided not to use it any more.

The palm kernel oil I used instead was much more comfortable, with no itching and none of the strange feelings in my mouth and throat.

Tonight I felt fine. I ran an errand, and by the time I got home my chapped lips were really bothering me again. I forgot that I was avoiding the coconut oil and put some on my lips, swallowing some in the process.

This time the reaction was unmistakable. It really took me by surprise.

##########################

The sudden and severe itching in my mouth, the tightness and tingling in my throat, the tiny rash-like itchy bumps on my neck and upper back, the sensation of my heart beating harder and faster, and the itchy feeling on my scalp--almost like my hair standing on end--was enough to have me mentally checking the location of Baby E's epi-pens.

My stomach started churning and making strange noises loud enough for DH to hear across the room. I suddenly felt very tired and a bit faint and dizzy. My head felt like it was made of lead. My ears and eyes itched. When I rubbed my eyes, my eyelids started swelling and burning. I had the feeling of a lump in my throat that made it difficult to swallow. I felt hot, and I suddenly had a fairly intense headache.

None of it was intense enough to be terribly worrisome on its own, but in concert it was enough to make me consider taking a dose of the safe Benadryl even though I get nasty side effects from it. I kept thinking that if I didn't think about it too much maybe it would all go away; that after the initial reaction surprised me, maybe I was making some of the heart-racing and that sort of thing happen by my startled worrying.

It's much better now, but still bothersome. If the tightness and tingling in my throat and the all-over itchiness doesn't go away soon I may go ahead and take the antihistamine. I'm not really having trouble breathing or anything--just a very slight shortness of breath, nothing to worry about.

I've been having all those symptoms fairly frequently lately, but not all at once, setting in so suddenly and strongly altogether like that.

This type of reaction to an allergen is something new for me, and rather unsettling. Baby E is the one we have to worry about the possibility of a severe reaction with, not me. We don't need to worry about me.

I hadn't been able to pinpoint any specific trigger for the bothersome symptoms before, especially once I removed all dairy products from my diet again. But coconut is probably the one thing we're most frequently exposed to lately.

I'm hoping that what I experienced tonight was something like a cross-reaction with one of my environmental allergies, and that if I avoid coconut for a while maybe I won't react so strongly to small exposures of coconut in the future.

Avoiding coconut completely is going to be a challenge, though. Especially since
all the soy- and corn-free detergents and soaps we use are made from coconut oil. It's interesting that the smell of our coconut-based dish soap has really been bothering me lately, and I've been wondering if some of my itchy skin could be related to our laundry soap.

I've been using coconut milk as a milk substitute, too. I couldn't figure out why I was feeling so sick all the time all of a sudden, especially after eating. I'd had a number of nasty digestive symptoms that were clearly related to food--especially the pumpkin pie I'd made with coconut milk.

I kept wondering if pumpkin or one of the grains I've been using in baking was bothering me. I have felt sick after drinking rice milk mixed with a few spoonfuls of coconut milk three nights in a row now, but had blamed it on fatigue or on not eating properly. I'd noticed that many of the baked goods I'd been making (with coconut oil as a butter substitute, of course) weren't agreeing with me, either, but had thought it was because I was eating too much of them or something.

Coconut could conceivably be the cause of the rash Baby E recently developed, too. I've been regularly offering her things cooked with coconut oil or milk, in addition to the exposure she gets through cleaning agents. Baby E has been spitting out everything I've baked lately, and the lovely pumpkin pie I made. It's also interesting that this rash she has is mainly on her cheeks--right where I kiss her all the time--and showed up just after I started using coconut oil on my lips.

I discovered tonight that coconut shares a very similar allergen protein with soy, so can be cross-reactive for people with soy allergy. I didn't know that. Why didn't I know that?

I feel so stupid. Sometimes I suspect allergies when there are probably other causes for things, and other times I fail to suspect allergies when I should. I think I need degrees in research, medicine, allergies, and detective work to figure all this out.

The babysitter was sick yesterday, so I stayed home with the kids while DH went to our home group Bible study by himself.

The girls and I had a lot of fun. Baby E had been in a yellow mood all day, so she wasn't too high maintainance and I was able to more easily do some things with the other girls.

#######################

We had some of our farm-raised ground beef and the rest of the potato/carrot roast I had cut up on Saturday.

We all really like the roasted vegetables, although the girls complained a bit that there was no cauliflower today. Thank you to those who suggested roasting it; that technique turned cauliflower from a detested vegetable into a household favorite here.

After dinner I taught the girls how to play pick-up-sticks. They are just at the right age for that sort of game now, and they really liked it. Even Baby E got in on the action a bit.

Baby E got really fussy during dinner. She was so grumpy afterwards, fussing and crying, that I attempted to put her down for a short nap.

While she screamed in her crib for 15 or 20 minutes, I played a Memory game with AJ and M&M. M&M is particularly good at that sort of game--she remembered the cards that had been turned over earlier much better than either AJ or I did. She remembers people's faces and places we've been before very well, too, unlike AJ and me.

I finally ended up getting Baby E up without having napped and still crying.

I really needed to find some way to entertain her so she wouldn't whine and insist on being carried constantly. Then I hit on the perfect plan: I took the little slide from the playroom, carried it down to the family room, and surrounded it with pillows.

All three girls loved it. It's amazing how simply changing the location of a toy can make it seem like a new toy all over again. Unfortunately, after I snapped the first couple of pictures my camera decided to start acting up. So the pictures I took of all three girls playing together didn't upload correctly.

AJ got very tired and started crying and saying she wanted to go to bed, so I let her go straight to bed without doing her chores, about an hour early.

Meanwhile, M&M and I modified a recipe to make thumbprint cookies with cranberry-orange filling. Baby E was well-occupied with the slide, so it was nice to have a relaxed time doing something fun with M&M. AJ ended up coming back down after resting for awhile, just in time to eat a cookie.

Both girls told me later that it was "a so, so fun night!"

After the older girls were in bed, I had a chance to focus on Baby E again. She was still a bit fussy and grumpy when she paused in her playing. But the slide had distracted her for quite a while and she had great fun with it.

As I got her ready for bed, I noticed something interesting. I'd noticed a day or two ago that her cheeks seemed slightly more red and mottled than usual, but brushed it off with a mental note to keep an eye on it. I hadn't noticed it again since then.

But last night it was more definite. Still very faint and scattered, but there were definitely little raised red bumps patterned on her cheeks. Baby acne, I wondered?

I took a closer look.

I wasn't sure, but I thought it looked more like eczema or a little rash than like acne. Still, it was just a faint bit on her cheeks.

Or was it?

As I looked, I realized that it went across her cheeks and wrapped around behind her ears and down the back of her neck. The same little raised bumps were in the slight diaper rash I had noticed earlier, and she had a few tiny raised red bumps on the insides of her wrists, too.

Very strange. But, still, whatever it was it was fairly faint and scattered. It could be allergy-related, I'm sure. Or I suppose it could be something like a heat rash?

It's certainly similar to the diaper rash she gets when she ingests corn or soy, and the full-body rash she got the time she dumped corn- and soy-containing cracker crumbs over herself. It's often subtle when that happens--just faint enough that I wonder whether I'm really seeing a rash or not. What do you think? Rash, or something else?

I made sure to give Baby E a bath before I put her to bed just in case it was a reaction to something on her skin.

We ate a lot of potatoes and carrots for the first time in a long while on Saturday and again tonight. Baby E refused to touch them, but I ate them.

I'd also given all three girls scrambled eggs about an hour before dinner last night, to tide them over while I was cooking. E's sudden escalation in fussiness started in the middle of eating them. It was the first time in several weeks she'd had eggs, but she's never seemed to have a problem with them in the past--eggs were something we watched very carefully when introduced. I didn't eat the eggs.

Now I'm not sure whether to give E some of the oven pancake made with eggs that AJ and M&M had for lunch.

The raised red spots are fading today, though still faintly there. I can't be absolutely sure how or if any of this is related, but it's definitely something I'll add to my records and charts. I'm trying so hard to find the balance between not missing anything and not jumping to unjustified conclusions about causation.

After all the comments I've gotten from doctors lately about how "you can't blame everything on food/allergies" I want to make sure I'm covering my bases.

Purple Puzzle Place

Thursday, November 30, 2006

The New Doctor

Pointing Thataway

Wednesday, November 29, 2006

Bullets of Good Stuff

Putting on my own oxygen mask . . .

Tuesday, November 28, 2006

Let's not think about that right now

Corned!

Monday, November 27, 2006

The Truly Excellent GI Specialist

Coincidence or Correlation?

Saturday, November 25, 2006

Interpreting test results when the negative control gives a positive result

Friday, November 24, 2006

ER Thoughts

Thursday, November 23, 2006

Worry

Happy Thanksgiving

Wednesday, November 22, 2006

No Comparison

Tuesday, November 21, 2006

The Phone Call

Communication

Time Machine

Monday, November 20, 2006

Laundry and Dish Soap

Delurking Opportunity

Sunday, November 19, 2006

Sleep, Soap and Allergy Testing

Saturday, November 18, 2006

Discrimination and Representation in the Momosphere

Friday, November 17, 2006

Bullets of Accomplishments and Non-Accomplishments

Plugging Along . . .

Thursday, November 16, 2006

Cute Comparison Pics

Signing For Food

More pictures of Baby E and Baby D

Left-Turn Lane

Wednesday, November 15, 2006

It's me, the crazy lady.

The Not-So-Excellent Allergist

The Excellent Pediatrician

A Window Into Baby E's World

Tuesday, November 14, 2006

Unbelievable

Wheee!

About Me

Recent Comments

Links

Previous Posts

Archives