Elemental Formula: now out of committee

The Elemental Formula bill passed committee at our state capitol. Unanimously.

It appears that it has a pretty good chance of being approved by the state Senate.

That's good news.

Allergy Frustration

Today Baby E and M&M saw the allergist, Dr. O.

Both had skin testing done--M&M for the top 8 plus corn and dust mites, and Baby E for a few new foods we've been suspecting, plus corn and soy (which we've been avoiding now for almost 18 months and 7 months, respectively). Neither set of tests showed any positive results.

As for M&M, he felt it likely she has reflux, especially considering that she had it as a baby.

He described the typical kid with reflux: "A kid with reflux might be small for her age, often doesn't gain much weight or grow very fast, doesn't want to eat, or is hungry often but then eats two bites and says she's full, might complain of tummyaches, could have throat and mouth pain, may snore or cough at night, and sometimes they can even have bad teeth from the stomach acid coming back up."

Sure enough, that sounds a lot like M&M.

Dr. O says that reflux is often hereditary and tends to be lifelong. He's going to write a note to our pediatrician to suggest that he look into the possibility

Dr. O is nice and seems down-to-earth. He wears things like faded jeans and a plaid shirt to work, which cracks me up. He believes me about E's reactions and doesn't act like he knows everything, He doesn't pretend that statistics are the end-all-be-all of diagnosis. He says that there is much we don't know about allergies and the immune system, and that symptoms trump testing.

But he also says he can't really do anything for us. Since the RAST test and his skin-prick tests were negative (even though previous skin tests were positive), we're just on our own trying to diagnose problems through trial and error.

He has an unusual method of doing skin-prick tests.

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Dr. O said he had never seen a reaction of 0 to even the negative control on a skin test, and that the normal response to the negative saline control should be a wheal of about 5mm, with a wheal of at least 3mm larger (8 or bigger) for a positive result.

I expressed surprise, saying that the other allergists we'd seen and everything I'd read said the reaction was supposed to be 0 for the negative control.

He said something like, "Supposedly. Everything you'll read says the negative control should be 0, but that's not really how it works. That's what other allergists will say, but I've been doing this for 20 years and that's not the way I learned it."

I figured out why when the nurse did the testing. She took each allergen extract on a multi-toothed plastic applicator and then pushed it in and twisted the points, rotating the applicator while pushing it down on the kids' backs to actually scratch their skin, instead of just pricking it.

"You have to get enough of the allergen in there to cause a reaction," Dr. O said. "Otherwise it won't be as accurate--you don't get a big enough wheal."

Of course you're going to get a larger wheal when scratching the skin and causing abrasions than when just pricking it to introduce the allergen. From everything I've read, the skin scratch method is considered less accurate and harder to interpret (and more prone to false positives) than the basic prick method the other two allergists used.

Dr. O thought Baby E's previous skin tests were invalid or negative because she had no wheal and no flare to the negative saline control (she did have wheal and flare to the positive histamine flare and to several allergens), and none of her positives were greater than 7mm even to the histamine control.

He said it was statistically 95% certain that Baby E did not have true IgE regulated allergies, but that she obviously did have problems with certain foods, although he didn't know exactly what or why. He said we should continue avoiding any foods that cause adverse reactions, of course.

He did say that he would recommend that we continue to avoid peanuts, tree nuts, fish and shellfish for E until she is at least 3, but that we probably don't need to worry about milk, eggs and wheat.

I told him that I was concerned about the fact that Baby E's reactions seemed to be escalating, and becoming more severe to smaller traces of allergens--particularly corn. It started out with just GI issues. Now we're seeing more itching, rashes and facial swelling in addition to the GI symptoms.

He said that generally allergic reactions don't get worse over time; they stay pretty much the same. Although they can occasionally escalate, that's rare. He said that since E doesn't have asthma we probably don't need to worry about the reactions being dangerous. It's the kids with asthma, he said, that end up having life-threatening anaphylaxis.

I asked what the likelihood was of E's facial swelling progressing into airway swelling and potentially becoming dangerous. He said, "None. Or as close to zero as it can get without being 100%, because nothing is 100%. You have the epi-pens around, so that's good. But unless she starts getting asthma you really don't need to worry about it."

He didn't really tell me anything I hadn't heard before, and didn't seem to think there was anything else he could do for us. I guess the common opinion among allergy communities that allergists aren't helpful for much besides doing testing and prescribing medications is pretty accurate. We're on our own trying to figure out how to test and live with Baby E's adverse food reactions.

Since the method of skin-prick testing used by the two allergists closer to home seems more accurate for us (at least Baby E tested positive to the foods we know she reacts to), we'll probably just go back to one of them if we feel a need for more testing in the future. It's not really worth driving all that distance just for testing that I don't trust as much. I do trust either of the other allergists closer to home to do testing.

Dr. O did give me a "to whom it may concern" letter to carry stating that Baby E has adverse food reactions and should be allowed to carry in her own food, in case we ever run into a problem with a restaurant not letting us bring in outside food. I wish he would have made it less specific to restaurants, but hopefully other establishments like sports arenas will honor it also.

He said that with true IgE allergies, typically it's very rare for a person to have allergies to more than one food family, and that typically allergies don't escalate with subsequent exposures the way Baby E's reactions have so far, so that's a point against allergies as a cause. That seemed strange to me, because the food allergy online communities are full of people with multiple allergies that seem to change in severity.

He also said that kids with eczema do often just get rashes that come and go, usually with no explanation. He seemed to feel that some of Baby E's rashes were likely just random or caused by something topical, and not necessarily from food.

He did agree that the fact we could get a consistent, reproducible, quick-onset reaction by feeding E specific foods was pretty clear that she was having food reactions, though, and that this would normally point toward allergy. He also said that the fact it goes away with Benadryl is another indication pointing toward allergy.

Other than that, he pretty much said that he didn't have a clue what was going on with Baby E, except that it was obvious she was having SOME kind of adverse food reactions, whether a true IgE allergy or not, and that we'd just have to figure it out ourselves with trial and error.

I'm not sure exactly what I was hoping for, but that wasn't it.

I doubt we'll be going back to any allergist again unless we have specific things we want to have tested and it's not something the regular pediatrician can order.

You know, I really don't care that much whether Baby E's reactions are officially Ige-regulated allergies or not. But I sure would like to see her get better. I'd really love to have a cure for whatever it is, but failing that I'd ideally like to have a doctor of some sort or another who could actually help us figure out how to best manage it.

At least avoiding the foods seems to be doing the trick. If only avoiding them (especially corn) wasn't quite so hard.

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Just quick notes.

AJ's birthday party went well. I'm told the cake and frosting DH and I made were delicious; I didn't taste them.

Baby E now has the cold and cough the older girls had last week, but worse. She's been pretty miserable the last couple of days, but was finally feeling better tonight.

We have allergist appointments this week--a followup for Baby E and one for one of the older kids. Last week I had gotten the time mixed up and we completely missed Baby E's appointment. I hate it when I do things like that.

Today we did school. Then in the afternoon and evening and I made 2 kinds of soup and 2 kinds of chicken, so we'll have some "ready-made" food for the next few days.

That's all for now.

Just call me foolish

I sampled a bit of the whipped cream frosting I made for AJ's parsnip cake last night. When that started making me feel bad a few minutes later, I ate a little plain yogurt. I can usually tolerate small amounts of yogurt so I thought the cultures in it might help my body break down the cream.

What was I thinking?

I spent the night being horribly ill.

Since my symptoms with cream and yogurt are usually just generalized itching a few days later, and maybe a stomachache and lactose-intolerance-like symptoms, this caught me by surprise. I had eaten yogurt with no ill effects at all earlier in the week. I still haven't been sure whether I have an actual milk allergy or just lactose intolerance. Both cream and yogurt are low in lactose.

I can tell you this, though--I hugely regretted my decision to try the cream and yogurt this time. Hopefully this will squelch my cravings for dairy products for good.

I don't know for sure what's going on. I think my stomach is still sensitive after having that intestinal virus on Valentine's Day.

Still, 2 weeks of nausea does make a person wonder . . . especially in combination with this.

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The pregnancy test I took yesterday evening was negative.

I would have been happy either way, although we've been very careful to try to avoid pregnancy because of health reasons (my doctors were already suggesting weaning, and have told me it's important to avoid pregnancy for my own health right now).

If I was pregnant right now I would be really worried about the health of the baby, not to mention the decisions I'd have to make about weaning Baby E. There just aren't any vitamin supplements I've been able to find that I can take while nursing. But there are no formulas on the market she can have (expect possibly the one elemental formula that's HUGELY expensive and tastes terrible), and her doctor wants her to stay on either breastmilk or formula because she needs the nutrition.

My being underweight and on such a limited diet without being able to take prenatal vitamins would certainly not be optimal for a healthy pregnancy.

Still, part of me was a little sad when I saw the negative result on the test.

If ovulation took place around day 37, as looks possible from the chart (though very unusual for me--normally it's around day 14-16), AF should be arriving in about a week.

This morning I have mild generalized itching and I still feel pretty sick and have intestinal symptoms (though thankfully no more vomiting).

I thought about trying to take Baby E's Benadryl again (I tried to take some last night and couldn't keep it down). But it makes me so tired, and we're going to have about 15 kids here for a birthday party in 3 hours.

Bless DH, he is so sweet. By the time it became obvious I was in no shape to make the birthday cake last night, he said he would do it. The poor guy stayed up until 3:30 AM working on getting ready for the party while I was glued to the bathroom.

The cake smelled delicious with my water-extract vanilla in it. I just ground up the outer shell of a vanilla bean in the coffee grinder and simmered it in water for a few hours, then refrigerated the mixture. DH strained it and used the liquid in the amount called for in the recipe. It smelled very vanilla-y and DH said the bit stuck to the pan tasted great and that the cake turned out well. I'll make some frosting (with some of the vanilla seeds mixed in) and decorate the cake today.

We did end up giving up on making a cake Baby E and I could eat for the party. It's free of her actual allergens (as long as the King Arthur all-purpose flour is truly corn-free), but it has butter and eggs in it. We're just avoiding dairy products and eggs for the time being because they tend to be allergenic, not because she's actually allergic to them.

A crumb of the vanilla cake won't make Baby E sick if she happens to get one, and she can eat the leftover parsnip cake from last night. I'll make a gluten-free, corn-free, soy-free, egg-free, dairy-free cake for the family gathering tomorrow.

For myself, I don't think I'll be wanting any cake for a while.

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Cake Baking

Today AJ is 6 years old. Happy birthday, AJ!

It has become tradition that the birthday person gets to choose what we eat for all the meals on their birthday. AJ's requested breakfast of zucchini rye coffee cake is in the oven now, smelling delicious as it bakes. (I'll post the recipe on Restricted Gourmet later, once I'm sure my modifications to the recipe work.)

Since we're having a small family birthday party tonight and the party for her friends tomorrow, AJ requested a parsnip cake and a vanilla cake.

I told AJ I was having trouble finding a vanilla cake recipe that would work with our allergies (whole-grain flour, no eggs or dairy products, no corn, soy, etc.), and she said that she would tell me what to put in it. Here's her recipe, with no hints or suggestions at all from me:

2 cups cinnamon
3 cups baking powder
5 eggs
1 cup of sugar
3 cups oil, any kind
1 cup of honey
1 cup flour
1 cup wheat flour

And that's all! Then you just need to heat the oven to 44 degrees and let it cook that long. Oh, I forgot: 2 cups of vanilla.

What we're up to

We began implementing a new schedule and approach to homeschooling on Tuesday. I'm excited at how well it's going so far, but it means I have even less time and energy for blogging.

Here are a few photos of the girls doing schoolwork.





Baby E is enjoying some age-appropriate activities while the older girls are doing school. Here she is spooning dry (uncooked) rice into various containers.



On Tuesday I let the girls ride tricycles in the driveway for P.E. Our neighbor Tulip Lady and her 2-year-old daughter, who Baby E calls "Anah," came over to play.





We all had fun, and Baby E especially had a good time. It was the first time she actually cried when saying goodbye to a friend. She kept crying and asking for "An-nah" for a long time after they were gone.



She's really catching on to people's names. Morning came over today to help with some housework, and Baby E kept calling her "En!"

Elemental Formula

The girls and I drove about 2 hours each way to the state capitol today. We went to show support for a bill that had public hearings today. If passed, the bill would require health insurance companies to cover elemental formula when medically necessary.

Every one of the feeding formulas on the market (including the "hypoallergenic" formulas) contains corn, soy or both. A child highly allergic to soy and corn, or either of those plus milk, has no options other than elemental formula if supplementation is necessary or if they for some reason can't breastfeed.

In some cases the child can't tolerate an element in breastmilk itself (something that can't be fixed by changes in the mother's diet). Without elemental formula, these children with multiple severe allergies would languish or even die.

The ultra-hypoallergenic elemental formula with no intact proteins is used for babies with severe allergies who can neither breastfeed nor tolerate other formulas, older kids in the same position who need some extra nutrition, and kids with eosiniphilic esophagitis.

However, the cost of elemental formula is astronomical. One family on a food allergy support group I take part in shared that her daughter's elemental formula costs about $800 per month. Obviously, many families simply cannot afford such a cost.

In many cases, paying for the elemental formula would be less expensive than paying the extra medical costs incurred by parents who, out of desperation, must continue feeding formula that causes health problems for their children. Yet health insurance plans in our state refuse to cover it--unless it's fed through a tube.

The formula is covered if fed through a tube, but not if fed by mouth. Medicaid covers it both ways, but not private health insurers.

I really hope the bill passes. So I wrote e-mails to all the senators and went to the hearing.

Unfortunately, between traffic and the weather on top of underestimating the drive time (thanks, mapquest), we got there just after the hearing ended.

At least we got to briefly meet some of the other kids and parents before they dispersed. And we got to see the capitol, which my girls found very exciting.

Our new best friend

While I slept away most of the afternoon, still recovering from the intestinal virus, DH took the kids shopping.

When they got home he said, "I bought strawberries, washed them and gave some to Baby E. She can have strawberries, right?"

"Oh, no," I groaned. "She's not allergic to strawberries, but they're some of the worst offenders when it comes to being treated with corn derivatives. They're almost always treated with citric acid. They're so porous you can't wash it off--it soaks in too deeply. And you can't peel them."

"Oh, rats. I'm sorry. I thought she could have strawberries."

"She can, in moderation--if we get them straight from the field and they haven't been treated with anything."

"Oh, no. I feel so bad."

"I've accidentally corned her plenty of times myself. We'll just have to keep a close eye on her."

"Look at her now. There go her cheeks getting red."

Sure enough, before long E had a bright red spotty rash on her cheeks. Then her face started swelling. She was fidgeting and crying, rubbing at her eyes as the skin around them puffed up and scratching at her reddened ears.

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So we gave her a dose of the diphenhydramine (compounded Benadryl).

Within 5 or 10 minutes the rash and swelling were gone. Her cheeks were suddenly clear. Her face looked better than it had in weeks.

She was still fussy and uncomfortable, but not nearly to the extreme she had been. The medicine definitely cut short and minimized the allergic reaction. She didn't even seem to have any significant side effects.

With the facial swelling and as miserable as she was, this was shaping up to be one of the worst allergic reactions she'd had recently. Even if it hadn't become dangerous, the misery and discomfort would have probably lasted all night--possibly longer. Even when her only symptom is a slight rash on her cheeks it normally takes hours to fade.

Antihistamine medicine is a most excellent discovery. I'm so thrilled to have it. I feel like writing effusive thank-you-notes to the person who isolated the drug, the manufacturer, the doctor who prescribed it, and the compounding pharmacist.

Knowing that the antihistamine works so well for Baby E gives me so much more peace of mind about the inevitable accidental exposures to her allergens.

As DH and I were saying to each other, "Wow! That was amazing. It looks like Benadryl is our new best friend. We're not going anywhere without this stuff."

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Better

I'm finally starting to feel quite a bit better. Had my first (small) meal of solid food tonight. I'm still very tired and have very little energy, but at least my intestinal system is finally settling down.

DH stayed home this morning and then took AJ and M&M to work with him. When Baby E went down for a nap I slept too.

I'm feeling rather disjointed and muddled still, and I just realized it's after 3 a.m.

I've completely lost track of time with the erratic waking/sleeping hours that go with being sick. Not that I have a very good sense of time, anyway. DH is always amused that I can be so surprised when I happen to look at the clock and realize what time it is. He knows almost to the minute what time it is at any given moment.

I guess I'd better go to bed.

But first, a tidbit about each of the kids:

AJ's artistic talents are really blossoming. She made some really amazing paper dolls and outfits this week, completely freehand. I'll post pictures soon. She is growing up so fast. It's hard to believe she'll be 6 next week. She's so capable, confident and eager to accomplish and learn things.

Tonight AJ drew up a map of our house with arrows indicating all the exits. She figured out a fire emergency plan for the family all on her own after watching a video about fire fighters. With her prodding we chose a meeting place in the yard in case of fire, and decided which neighbor would be the emergency contact. AJ also informed us that sometime this weekend we need to test all the smoke alarms ("you push a little button until it beeps really loud") and practice getting out of the house in a fire.

M&M is going through a stage where she loves to "help". She and AJ were both so excited tonight that they got to help DH make dinner.

M&M is really enjoying reading to and playing with Baby E. As E gets older, all three girls find more things to do together. It's nice that they play so well together most of the time. Tonight M&M and Baby E were tumbling on the floor tickling each other, stopping to give hugs and kisses every now and then. Very cute.

Baby E has learned how to say itch--"itz". She's also starting to pick up on fingerspelling and try to match the signs with letter names and sounds. Tonight she made an L with her hand and made the T sound. So I went through all the letters and their sounds with her and then she made a D and said d.

When I put her to bed, I signed and said "I love you" to her. She held up her little hand, trying to form the sign, and said, "yuh you." Then she gave me a hug.

Alive

Well, I'm alive. Finally able to hold down small amounts of fluids. Lost 4 1/2 lbs. in one night. I worked so hard to gain those pounds, too . . .

I'm just praying that the kids won't get this illness.

Sick

DH shared his intestinal virus. I'm sick now.

I really hope the kids don't get it.

Wordless Wednesday: Happy Valentine's Day!

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The latest summary on Baby E.

Thanks to David for highlighting my blog. Since he linked to the 15-month-summary I wrote back in November, I wanted to post an update to link from that post.

When SIL, BIL and their family were here recently, SIL commented how different Baby E's entire demeanor is now than it was in December. She's so much happier, more social and interactive, energetic, and sunnier in demeanor than she was a few months ago.

Even though she still has a lot of reactions and symptoms--some of which we're unable to pinpoint the causes of--she's still doing so much better.

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In October and November she was screaming inconsolably at least 30 to 50% of the time. She was fussy, lethargic, grumpy and uncomfortable most of the rest of the time. Her truly good days were far and few between, and what would have been a relatively good day then would be a "not feeling well" day now.

The reflux medicine has made a huge difference for her. Even just having her off it for a few days when she started reacting to it, I've been seeing more of the short-fused, fussy, grumpy and uncomfortable baby again. I really don't want her to go back to that as the norm. Hopefully she will be okay with this new batch of medicine, or we will be able to control her discomfort with Zant@c instead.

Thickening Baby E's beverages has made a big difference too. She doesn't choke so often, and she no longer sounds congested all the time.

The other thing that I think has made a big difference has been raising our level of caution about incidental exposure to E's allergens. Everything--food, toothpaste, laundry detergent, craft supplies, toys, etc.--comes under scrutiny.

If it has even traces of E's allergens in it, it either doesn't come into the house or it gets treated like a toxic, dangerous substance that can't come near anything Baby E might touch. If we have people over, we provide the snacks or check labels as it comes in the door. Anything (especially anything crumbly or drippy) with corn, soy or coconut in it goes immediately back out to the person's car, unopened.

We've discovered the hard way that we can't just stick to a very limited diet with Baby E. If she eats any one thing too often, she's likely to develop an allergy to it. So we have to rotate foods and try different things more often than we might otherwise choose.

Anything that seems at all doubtful is being added carefully, one thing at a time and ideally not more than one item per week. But even with that precaution we get frequent mild reactions.

Sometimes it's something that has been safe dozens of times before, and this time we happened to get a batch with some kind of cross-contamination or an undeclared ingredient change.

Maybe this batch of organic carrots was washed in citric acid or came in contact with something that had been treated with soy- or corn-derived wax. Maybe the meat processor decided to start washing their machinery with a disinfectant made from one of E's allergens. Maybe that pear or tomato was ripened using corn-derived ethelyne gas.

We suspect that Baby E has one or more allergies that we have not yet identified--it could be a food, something environmental, or who knows what. Since she's had positive skin tests to at least 8 different things, but negative IgE blood tests to everything, it will be interesting to see what the allergist says as we further explore her reactions.

Since her severe face rash and swelling during the endoscopy in December, she now gets rashes on her face very easily. That has become a good indicator of her mild allergic reactions.

Most of the time now, Baby E sleeps through the night. She has a lot of mild to moderate reactions (including rashes, itching, occasional swelling, congestion and gastrointestinal symptoms), but hasn't had a really severe reaction for weeks.

She doesn't feel well sometimes--still too much of the time, we think. But generally she is happy, bright, energetic, interactive and loves life.

We don't have all the answers yet. There may still be other things unrelated to allergies (besides the reflux, aspiration, and anemia) that we haven't yet figured out.

The GI specialist wants to do another stool test to check for sucrose intolerance, but I'm guessing that will come back negative.

She isn't consistently getting any of the symptoms we were seeing from just eating normal amounts of unrefined sugars. The sweet-smelling malabsorptive-type stools seem to be connected to her low-grade allergic reactions, and to consuming certain foods (particularly plums, I think--which were probably coated with corn-derived wax that wasn't completely eliminated with washing and peeling). That's encouraging to me.

I've had to come to terms all over again recently with the fact that we probably will never get to a point where things become static and we can completely or almost completely keep E from having reactions. But I think I'm okay with that now.

I'm just glad she's so much better than she was.

It's interesting to look at the symptoms Baby E had when being regularly exposed to high amounts of allergens and dealing with a lot of discomfort from the reflux, etc.

She was losing skills, regressing in speech, becoming antisocial, screaming and flailing for hours at a time, sometimes sitting staring into space or barely responsive, being extremely picky about foods and textures, failing to gain weight, getting wildly upset by the slightest things, and sometimes engaging in repetitive behavior such as banging her head with her fist.

She still does those things if she gets a moderate to severe allergic reaction or is in a lot of discomfort. Otherwise she's perfectly social, interactive, bright, intelligent and very normal.

I have to wonder, though: If we hadn't been able to figure out that allergies and reflux were issues for her, what would have happened if we'd kept feeding her the problem foods and left the reflux untreated? Would she have descended gradually further into the withdrawn, abnormal behavior?

Even if we'd eventually figured out her issues, might some of the damage eventually have become irreversible? Would she have dropped so far in her development that she would have been unable to catch up? Or could the patterns of behavior have become so deeply ingrained that they became normal for her?

If we had been unable to figure out what was causing Baby E's discomfort and other symptoms, would she have been diagnosed with failure to thrive, autism, asperger's, sensory integration disorder, oppositional defiance or some other similar condition? Doctors were already starting to mention things like SID.

When a young child is experiencing intense uncomfortable sensations, it will show in their behavior--perhaps in unexpected ways. It's hard enough for an adult to function and control their behavior when in pain, itching, experiencing migraines, having allergic reactions, etc. What must it be like for a young child who doesn't understand what's going on, or perhaps has never experienced anything different?

I thank God constantly that we've been able to find so many causes and solutions to help Baby E.

The last week or so, I've been feeling that it's easier to divide my focus and energy between the various household and family needs. Baby E is still essentially a special-needs child, and her care, diet, etc. will probably always require extra energy. But most of the time, at least at home, I think we're able to give her a pretty normal life.

And I'm slowly learning how to meet her needs without making her too much the focus of the household. I'm finding ways to make time to homeschool AJ and M&M and focus on them, while still taking care of household tasks, cooking hypoallergenic meals, etc.

I still have a long way to go, but I think we're on the right track toward learning how to balance our life and family.

Unfortunately, at this point it involves getting very little sleep. :) Hopefully as I improve in my time management and balancing skills, that will improve.

I fluctuate between feeling discouraged and overwhelmed, and feeling hopeful and positive. But through it all God sustains me and gives me strength.

Today I'm feeling encouraged.

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Just a normal day of research and reactions

Last night I bought some Florida's Natural grapefruit juice with calcium.

Since Baby E does well with the unenriched orange juice and the OJ with calcium is on the corn-free list, it seemed pretty safe. We've been drinking Florida Naturals orange juice for a long time with no adverse effects. Finding a safe source of calcium has been getting more urgent, since we aren't eating dairy products and I'm having more and more issues with my teeth.

I drank a glass of the juice before bed. It was good.

When Baby E nursed this morning, she got a spotty rash on her face. Then she had mild diarrhea. I was itchy and having the same kind of intestinal symptoms by then, too (hmmm--interesting!).

When I called the company, after quite a lot of runaround and being initially told it was corn-free, I finally got a straight answer.

The calcium citrate is a byproduct of citric acid production, made by a fermentation process. It may be grown on corn, they said, but it certainly wouldn't contain any corn protein and couldn't cause an allergic reaction.

Of course we know otherwise. It could be from the mold used in the process, from the corn, or both, but Baby E definitely reacts to citric acid derived that way.

The rash faded after an hour or two. When it was mostly gone I gave Baby E a dose of reflux medicine from the new bottle of Omeprazole.

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She's so uncomfortable without the reflux medicine that I felt it was important to, if at all possible, get her back on it as soon as possible. If I wait until she's not having any reactions to try it again, it could be days or weeks of unecessary discomfort for her.

2 hours after giving her the omeprazole, I still wasn't seeing a clear reaction. That was encouraging, since she had reacted within an hour or 90 minutes before.

After 3 hours her cheeks were moderately red and she was getting a bit fussy and gassy, and saying "ow" occasionally. But it was well within the range of normal, and nothing that couldn't be from some other cause (running around roughhousing with her sisters, being overdue for a nap, etc.)

Of course, her earlier reaction today could complicate things or make it harder to discern a reaction from the medicine. Now that I'm nursing her again before her nap, I won't be able to tell which trigger causes any new symptoms.

If she did have a reaction to the medicine at all, it was much milder than the reactions she was having before. But I don't think she actually reacted to it. Of course, I'll be watching her carefully after each dose for the next few days.

It does seem likely that she may not actually be allergic to the omeprazole and that the last batch just somehow got contaminated with traces of her allergens. The fact that she was taking it for months with no ill effects and then started having problems with the recent refill would seem to point that direction. I really hope that turns out to be the case.

Before I went to bed last night, I set up a suprise for AJ and M&M. I made breakfast plates for them with banana bread, rice cakes with sunflower butter, and sliced kiwi fruit. Those went into the refrigerator on a low shelf. I set out art supplies and paper. Then I wrote a note telling them that breakfast was in the refrigerator, and that when they had finished their chores they could make Valentines.

They were so excited to get a letter. They loved having breakfast artfully arranged and ready for them to eat, and couldn't wait to do the craft. I've rarely seen them do their chores so quickly and cheerfully.

While the girls were doing art projects I let Baby E draw with colored pencils. I'd heard on the avoiding corn forum that Crayola colored pencils were corn-free, so they seemed the safest option for her to use. I've let her use them several times under close supervision, and she seemed to be okay with them.

All three girls had a great time coloring.

Then I noticed that Baby E had red raised welts wherever the tips of the colored pencils had bumped her skin. They seemed awfully big, raised and red for just pressure marks, so I called the company.

It turned out that the colored pencils do not contain corn, but they do contain soy.

There's no coconut/palm oil in anything other than the oil pastels.

The crayons contain cornstarch in the glue that fastens the paper wrappers. The crayons themselves do not contain corn, soy or coconut/palm oil. They are made in a paraffin base, not vegetable or beeswax.

I am going to try taking off the wrappers and washing the crayons, and then letting Baby E use them. I'm excited that the crayons will probably be safe once washed. She greatly prefers crayons to colored pencils, and she's always begging to use the girls' crayons.

The welts faded pretty quickly, so I'm not absolutely sure they were really from the soy in the pencils. Then again, her rashes are often short-lived even when they are definitely and reproduceably a reaction. She does still have a few red marks where the welts were, hours later.

Anyway, it's nice to know which Crayola products do and don't contain her allergens.

I took some pictures of the welts. I kept telling her to "look!" and pointing different directions to get her to move her head so I could get a good shot.

She figured out pretty quickly what I was doing. She thought it was pretty silly that I was telling her to look at the ceiling or across the room when there was nothing there.

A little while later, I was trying to get her to at least taste a bite of her lunch. As I was holding a piece of meat and trying to get her to open her mouth, Baby E suddenly got a glint in her eye.

She pointed to the window. "Ook!"

As I turned to see what she was pointing at, she snapped her mouth shut, turned her head and batted the piece of meat away. Then she laughed.

This kid picks up on everything.

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Conversation Over Dinner

AJ: Mom, where did you and Daddy meet each other? What did you say the first time you talked to each other?

M&M: What were you wearing? Did Daddy think your dress was beautiful? What was Daddy wearing?

AJ: How did you get to know each other?

M&M: Do you think I'm beautiful?

AJ: And Daddy wanted you to be his wife? Did you want Daddy to be your husband?

M&M: Isn't my dress so beautiful?

AJ: How did you and Daddy know you wanted to get married to each other?

M&M: I will show my dress to everybody, and they'll think I'm beautiful.

A little later:

AJ: Mom, what does ventured mean? I read it in a book the other day, but I don't know what it means.

M&M: I think everybody should wear beautiful clothes for AJ's birthday party. That would be fun. And I'll be the prettiest of all.

*****

Bonus conversation: Apparently AJ is picking up on my efforts to redirect M&M's focus lately.

The other day AJ and I were in line at the grocery store, and the lady behind us told me, "Your daughter is beautiful."

AJ smiled up at her and said, "I'm also kindhearted."

The lady smiled back. "I'm sure you are."

Monday Moments

• DH is feeling better and went to work today. The worst of it lasted only one night, and nobody else seems to be coming down with it so far.


• Baby E went to sleep without a 3-hour struggle for the first time in several days for her nap today. She's sleeping now. She has been increasingly fussy and short-fused lately.
  
  I can tell the reflux is bothering her a lot more now that she's been off the medicine for a few days. Sometimes I can hear her reflux, and then she'll start crying sharply. She woke up screaming this morning. She cries and says "ow" when I lay her down for diaper changes, etc. She's crying and saying "ow" a lot in general.
  
  #############
  
  Our compounding pharmacist made up a few doses of omeprazole for her in a new batch, just so we can be sure it's actually the medicine and not some cross-contaminant that she's reacting to. If that doesn't work, I'll have to call the GI specialist to see if she can prescribe Zantac for us to try instead.
  
  I think those two are the only options for reflux medications that can be compounded free of Baby E's allergens, so I really hope one of them works. I'd hate to have to decide whether the pain and damage from the reflux or the mild allergic reactions are the lesser of two evils for Baby E.



• Speaking of compounding pharmacies, I spoke with the pharmacy that handled the Nystatin fiasco again today.
  
  They said that the reason they didn't disclose the glycerine and xanthan gum in the suspension was because they thought both the doctor and I were specifically asking whether there was glycerine or any other ingredients in the stevia itself, not in the entire medicine. So they didn't feel a need to disclose the other ingredients--even when I was calling trying to figure out why Baby E was reacting to it.
  
  That seems patently ridiculous to me. I did ask a lot of questions specifically about the stevia, but that was because they'd already told me there was nothing but water and stevia added to the nystatin powder. The pharmacist apologized and said it was a miscommunication. Ugh.
  
  At least she finally offered to refund my money.


• I e-mailed the company that makes the oxygen masks used by the children's hospital again. I hadn't heard anything more about what Baby E might have reacted to in the mask, so I wrote a follow-up e-mail.
  
  The medical supply company rep e-mailed back to say that she hasn't been able to get either the doctor or the hospital to return any of her phone calls. I'll have to call today and see if I can get them to give either the rep or me the product code so that the company can research it.


• It's amazing how much work, persistence and pushing it consistently takes just to get such simple pieces of information. Sometimes it seems the whole world is trying their best to make it difficult to deal with Baby E's allergies.


• After Baby E went down for a nap, I taught AJ and M&M their Bible lesson for the day. The lesson was about Adam and Eve, and the serpent in the garden.
  
  I had fun making my arm and hand into a snake and acting out the story with all the different voices. Two sets of eyes glowing, and the interest with which the girls discussed the story, made it the highlight of the day so far.

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Ding-Dong, The Itch is Gone

DH is feeling slightly better today after a very miserable night.

Baby E is uncomfortable and fussy, and took 3 hours to go down for her nap again. Either the sugar or being off her reflux meds (or both), or something certainly seems to be bothering her.

We'll be able to pick up a fresh batch of the omeprazole on Monday. The pharmacist made up just a few doses so we can try that and see if we get the same reaction she was having to the medication we have here.

AJ and M&M are tired and grumpy, too. They've had a lot of activity and too many late nights lately. I think early baths, a nice long bedtime story, and an early bedtime are in order for them tonight.

Last night I was feeling like I might come down with what DH has, so I ended up staying up until almost 3 AM. I was trying to do the things that were most important to have done in case both DH and I ended up mostly incapacitated for a few days. At least I got the kitchen cleaned up, washed dishes, did laundry and got some small bits of meal preparation done ahead for the next few days.

I'm not feeling too badly at this point, but I hope Baby E will let me go to bed at a reasonable time tonight.

At least I'm not miserably itchy.

For years I thought that having generalized itchiness and dry skin was just normal for me, especially in winter. But after I cut out coconut and its derivatives, even in soaps, the itching went away (as long as I continued to avoid dairy products). It was great to not be so itchy for once!

Then, 2 or 3 weeks ago, I started itching again. Having it come back was frustrating. Once I knew I could stop itching, it was less tolerable than when I thought it was inevitable.

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

At first I thought it was from trying some dairy products that week (which could have been the cause at first). But it lasted so much longer than it should have after I stopped eating dairy again. I couldn't figure out why it wasn't getting better.

Finally I figured out what changed around the time I started itching. I had used white distilled vinegar (the normal kind made from corn) in the few loads of mine and DH's laundry.

I've been making my own laundry soap out of olive oil bar soap, borax and washing soda. Since many recommend using vinegar in the rinse I had been doing that. But the rice vinegar or white wine vinegar is so very expensive.

So we decided that since DH and I aren't allergic to corn, and it's just topical, it would be reasonable to try using the cheaper corn vinegar on our clothes. Besides, it all gets rinsed out anyway, right? We'd save the expensive vinegar for Baby E's laundry.

Friday night it dawned on me that the vinegar in the wash was the only thing that had changed around the time I started itching again. I decided to try washing my clothes without it just to see if it made a difference. I washed two loads of laundry sans vinegar yesterday, with extra rinses just for good measure.

Less than 24 hours after switching to the freshly-washed clothes, the itching is already significantly better. I slept better, too.

I'm not supposed to be allergic to corn, but I do wonder. Looking back before I cut corn out for Baby E's sake, there are things that seem relevant in hindsight. For instance, I was wondering if hummus didn't agree with me, because every time I ate my favorite snack of corn chips, hummus and mango salsa I started feeling awful afterwards. I felt generally better after cutting out corn, too.

Both E and I got horribly sick when we took a trip to Mexico a year ago--when we were eating lots of corn almost daily. One of our worst spells was after having tamales for dinner--and nobody else "caught" that particular illness.

Corn was one of my "elevated negatives" (4/5 wheal/flare) on the skin prick allergy test. Of course, that was a negative according to my allergist, since I had a 3/9 to the negative control.

It will be interesting to see what happens when I wean Baby E and can try eating corn again after being off it for so long.

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Outings and a virus

We went to a birthday party for a little friend today. We let Baby E play with the other kids until the food was brought out, then DH left with E while I stayed with AJ and M&M for the rest of the party. That worked well. The compromise allowed everyone to participate in the party with minimal risk of causing a reaction for Baby E.

She was a bit fussy tonight, and her reflux seems worse now that she's back off the medicine. Other than some gassiness, hiccups, etc. we're not seeing much effect from reintroducing sugar to her diet so far. Certainly not allergy-type reactions that I can tell.

If she is sucrose-intolerant, it seems to be a fairly mild case--or something that takes several days' worth of exposure to build up. Maybe the symptoms we were seeing were just from the omeprazole, or from something else. I don't know.

After dinner tonight, AJ and I took our outing that had been postponed from yesterday. We bought supplies for her upcoming butterfly-themed birthday party and windowshopped for jewelry. It's really fun to have a little girl who is actually getting old enough to enjoy things like looking at (but not buying) jewelry.

By the time AJ and I got home, DH was feeling sick. Soon it became clear that he has a wicked stomach virus.

At the moment he's sleeping on the couch downstairs for better proximity to the bathroom and the warmth of the gas fireplace. The poor guy is absolutely miserable.

Please keep him, and also the health of the rest of the family, in your thoughts and prayers.

Kitchen Soup

AJ and I are supposed to go out for a mom-daughter "date" tonight, so I wanted dinner to be early. As soon as Baby E went down for a nap I got to work.

I was planning to make cauliflower soup. But the cauliflower had gone moldy.

In the process of getting the cauliflower out of the over-full refrigerator I knocked over the container of homemade chicken broth. The lid apparently wasn't sealed at all, because broth poured all over my shoes as the now-empty container landed upside-down on the floor with the lid several inches away.

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My kitchen was a lake of chicken broth. It ran under the refrigerator and across the room. I threw down towels, wiped my shoes and enough of the refrigerator to be able to close it, and wanted to cry.

It's not like I can open another container of chicken broth from the pantry, or run out and buy some. I have to make my own. Really good chicken broth is a time-consuming process. The batch I spilled had simmered for 6 or 8 hours in the making.

I really didn't have time to mop the kitchen floor today. And I'm going to have to ask DH to help me move the refrigerator tonight, I guess.

My kitchen smells like basil and chicken soup, but there won't be any for us tonight. I don't know how I'm going to cook dinner (cook what for dinner?) and clean everything up adequately, and still be ready to leave at the planned time.

Worst of all, I am not sure how to clean my shoes. The broth really soaked deeply into them, amazingly quickly. They're my beloved ankle boots: real leather, high quality, classy and comfortable. I've had them for years, but they still polished up well. They're the nicest pair of shoes I've ever owned. Even at something like 75% off they were a splurge for me.

I haven't weatherproofed them for far too long, so the chicken broth soaked right into the leather. Some of the dye came off when I wiped them. I don't know much about caring for leather, other than that I should have oiled the shoes months ago when they started losing their finish.

Will they ever really come clean? Or will I go about with splash-marked shoes, smelling of spoiled chicken soup forevermore?

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A-bet!

I was reading books to Baby E before bed last night.

She said "ook" and then "a-bet" while pointing to the Usborne Farmyard Tales Alphabet book. Then she said "ddd" and turned the pages until she found a picture of a duck, and pointed at it saying "Dd-duck! Ack, ack. Duck."

She was also very excited by the inscription inside the front cover. She kept pointing to it saying "ddd" which has become her word for any writing or alphabet letters.

She also knows "bbb" goes with "ball," but currently her favorite letter of the alphabet is D. I just think it's funny and amazing that my 18-month-old has a favorite letter of the alphabet.

She and I spent quite a bit of time naming the pictures in the book and saying the animal sounds. She knows them all, although I'm not sure her versions would be understandable to a stranger. Apple is "ap," dog is "uff," butterfly is "fye" said along with fluttering hands, and bird is something like "ud," but she and I know what she means.

Her letter sounds, though, are crystal clear. She doesn't match them to specific letters consistently yet, but she can repeat them all quite well as I point to the letters and say them with her. She likes to point to different letters and guess what they say, and then wants me to tell her the correct sound.

The sweetest thing is that AJ and M&M have been reading to her so much. They love sharing books with her. It always makes me smile to see them all poring over a book together.

Omeprazole

Well, the omeprazole (generic form of Pr1losec) is a confirmed cause of reactions.

Almost an hour to the minute after giving it to her tonight, the same reaction happened as an hour or 90 minutes after giving it to her this morning.

Over a 5-minute period we watched her go from almost no rash and normal behavior to bright red, inflamed, itching cheeks, itchy eyes and nose, lots of tantrums, repeatedly saying "ow," and full-fledged fussy, clingy behavior.

I wouldn't have said her face swelled at all, but now that I'm comparing photos I wonder if there was some slight swelling or if it was just her facial expressions that make it look that way.

9:01PM (the yellow is food on her cheeks, which makes the rash look slightly worse than it is in the first couple of pictures):


#########

9:02PM:


9:26PM:


9:32PM:


9:49PM:





The onset was so fast once the reaction started, which seems strange an hour after taking the medicine. The timeline tonight matched what I noticed this morning, but possibly a little shorter. I think the reactions were happening closer to when I gave her the medicine before I took her off it; I expect that if we had her back on the medicine for a while again the reactions would gradually get faster and more severe.

We finally got our compounded Benadryl today. The pharmacist at this new pharmacy had to order the raw ingredients, so it took a while. I was glad to have the Benadryl tonight.

Once her reaction got bad enough to take pictures, we gave E the antihistamine. It did seem to make the reaction shorter and less intense. Still, she's squirming uncomfortably and banging her head with her fist (typical allergy behavior) while nursing at the moment. The medicine most certainly didn't make her groggy or sleepy--if anything it made her hyper.

When I told the pharmacist about E's omeprazole reaction, he reminded me that there are two different formulations of the drug. One is plain omeprazole powder, which is combined with sodium bicarbonate as a buffer, and the other which is granules that are enteric-coated to make them delayed-release. A compounding pharmacy would have both the enteric-coated granules and the powder. The enteric coating, of course, contains corn-derived ingredients.

I had called the other pharmacy a day or two ago to ask if there was anything different about this batch of omeprazole. If E was going to develop an allergy, it seems odd that it would just perfectly coincide with getting a new bottle, when she'd been fine with it for a couple of months before then.

I asked the compounding pharmacist if there was anything done differently, and had her check the ingredients on the sodium bicarbonate suspension. But I didn't think to ask if there was any possibility the enteric-coated omeprazole was used. I also didn't ask about the possibility of cross-contamination or of traces of something else getting into her medicine, although that seems unlikely.

Needless to say, I'll be calling the pharmacy again tomorrow to ask some questions. I think I'll ask them to mix up just 2 or 3 doses worth fresh for us to try, just to make sure it's not some kind of cross-contamination issue or an accident with using the wrong omeprazole formulation.

BTW, neither of these pharmacies is the one that lied to me about the ingredients in the Nystatin some time ago. Both of these pharmacies seem to take E's allergies quite seriously, tend to err on the side of caution when choosing ingredients, and are quite willing to check and double-check things for me.

Since the omeprazole reactions seem to be short-lived, I'm going to skip the omeprazole tomorrow and try giving Baby E a small amount of pure unrefined cane sugar to see what happens.

I'll be standing by, camera and notebook in hand.

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Sucrose Malabsorption, Face Rash

[Edited to make the correction that it's sucrose, not glucose, that is the suspected problem. Sucrose, like lactose and maltose, is a double sugar which requires a particular enzyme to break it apart into its elements (in the case of sucrose, that would be α-glucose and fructose).]



The GI specialist called this morning. Apparently she had told me Baby E's stool test was negative when we talked a few weeks ago (when I had the flu) but I hadn't registered that bit of information, being sick.

I told her that since we had reintroduced sugars and gotten a new batch of reflux medicine, Baby E had been having symptoms again. However, I thought she was having separate reactions to each.

When I described Baby E's stools and intestinal symptoms to her, she said that it sounds like Baby E has a problem with sucrose. We're going to do another stool sample now that she's eating sugar again, and then will most likely have to take her off sugars again.

The possibility of a sucrose intolerance or congenital sucrase-isomaltase deficiency makes a lot of sense given Baby E's history and symptoms. If she does have it, though, I'm thinking it's most likely a milder form, involving an enzyme deficiency, rather than a more serious condition that involves a complete lack of the enzyme necessary to break down glucose.

###########

I haven't read up on any of this much yet, so am not sure if there is a difference between the two other than the degree of enzyme deficiency. I think there may be a continuum or range of severity. I'll have to do quite a bit of reading about it if it turns out to be an issue with Baby E.

I certainly hope it's just a matter of making sure she doesn't get too much sucrose (avoiding sugar, honey, high-sugar fruits, overload of starches) rather than a complete avoidance of all sucrose (avoiding all sugars of any type as well as all fruits, some vegetables, almost all starches).

Either way, it wouldn't be an easy thing to deal with, and it's unlikely that she would ever grow out of it. It's a rather overwhelming possibility--at least with food allergies, she has some chance of growing out of it. It is possible, though, that if it was the milder form of glucose intolerance she could be able to tolerate more carbohydrates as she got older.

The GI specialist strongly recommended that we try to keep Baby E on the reflux medicine if at all possible, since she will probably get much worse again within a week or two of stopping the omeprazole. There really aren't a whole lot of other options for treating her reflux.

Baby E has been so much better since Tuesday early evening, when I took her back off sugar and the reflux meds. This morning I gave her a dose of the medicine.

I documented the trial carefully.

The picture at the top of this post was taken just as we were beginning breakfast, 9:38 AM.

Here she is just before being given reflux medicine, 10:25AM:




10 minutes after medicine, 10:38 AM:



Approx. 35 minutes after medicine, 11:00AM.

The rash was just barely worse, and a bit more scaly. I decided that she wasn't having enough of a reaction to show up well on a photo, and stopped paying such close attention for a while.



I let the kids watch a video while I did some chores. I checked on the kids frequently, but didn't look closely at Baby E's face until some time later.

By 11:50AM she was very fussy and started saying "ow" repeatedly and throwing tantrums. I had quite a struggle with her to change her diaper, which turned out to include diarrhea.

At that point she was having quite a flare-up:






The rash was starting to fade slightly by around 12:30PM:






By 1:20PM, it was fading quickly, though still slightly redder than it had been in the morning. She was feeling quite a bit better by this point.




Tonight, we'll give her the medicine a couple of hours before bedtime. This time I won't assume she's not having a major reaction so soon. I think I may have missed getting photos of the worst part of the rash this morning.

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Test Results and Cavities

Baby E's ImmunoCAP IgE blood test came back negative for everything. We had tested about 40 foods, including the 10 she has had positive skin pricks or severe obvious reactions to.

Even her overall IgE was low. I don't know how that can be possible, but there it is. I had hoped that would be a big help in figuring out which foods she was reacting to. I guess we're left with elimination and food challenges.

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

Even though it's been proven multiple times that she does react to foods, and despite the positive skin-prick tests, this latest result is a little crazy-making. I know there's a chance of a false negative, but on everything? How can that be?

The nurse who called said that the test results meant Baby E's reactions weren't IgE regulated. I'm sure some of them aren't, but what of the times she gets rashes, itching, stomach pain, diarrhea, facial swelling, etc. within minutes of eating something? Wouldn't that have to be IgE regulated?

What is going on here? I would expect some false positives or false negatives on SOME of the tests, but on all of them? These tests are supposedly in the 90% and up range of accuracy for a negative. I wonder what the allergist is going to say. I know what the other allergist would say . . . he would insist that her issues aren't actually related to what she's eating at all.

I think I'm going to ask him about helping us do food challenges on some of the things we suspect or are not sure about.

I do have to wonder if maybe some of this actually isn't caused by food. After all, with the prevalence of corn or soy we could probably find some way she was exposed to it on any given day. Is it possible we could be blaming things that aren't related on those exposures? I don't think so, but it is a possibility I try to be aware of.

Like I said, it's crazymaking.

AJ had her first dental appoiment this morning. 5 cavities. Five. All between her teeth. I should have taught her how to floss sooner. Poor little bug. I hate having fillings, and I'm so sorry she's going to have to go through that.

I feel it's my fault for not taking better care of her teeth. I've had them brush regularly since they first got teeth, but I've only been starting to teach them how to floss in the last week or two. We're going to go and buy some kids' floss helpers for the girls to use.

I think I'll have DH take her to the appointment. I don't know if I can stand to watch her get the novocaine shot and have her fillings done.

On top of that, I burned her last night. I'd gotten the rice crackers out of the oven and was taking them off the cookie sheet. I thought AJ was well out of the way, but then she decided to lean really close to me and reach her hand out. She bumped the top of her hand right into the hot pan. It's not a severe burn, but I feel terrible about it.

She keeps telling me that I should have been more careful and should have not had the pan so close to her, to which I tell her again that I'm sorry. I thought I was being careful, but obviously not careful enough.

We did do some school yesterday after Baby E went down for her nap, which meant that no dinner got cooked. There were a few scattered leftovers from various meals, so we ate those as a late supper.

Baby E does seem to be feeling better today. I plan to do some schoolwork with the kids, try to do a bit of housework, and run an errand at some point. Today I'll try to start cooking dinner before lunch, as I often do. It's more likely to be ready at a reasonable time that way.

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Priorities

Baby E is finally napping, after hours of acting tired and miserable but being unable to fall asleep.

She was awake until 1 a.m. last night with the same symptoms. The rash on her cheeks gets worse and she becomes very short-fused. She'll often say "ow" and pat her head or tummy.

This has been happening more often again the last few weeks. I wish I knew why.

I thought for a few weeks there that we were over the worst of this. Now I'm not sure if reality will ever allow anything other than brief lulls.

Is it unrealistic to expect that we'll ever reach a point where life is somewhat under control, with only rare and brief bad spells for Baby E? Oh, how I hope not.

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

Baby E is insistent that she needs to use the potty, and wants milk. But then she sits and sits on the potty and can't go, or won't sit on it at all, or nurses for only a few minutes and wants down only to be asking for more a couple of minutes later.

I think she must be having stomach cramping and pain. She doesn't know whether to interpret that as needing to go potty, being hungry or what. All she knows is that she's miserable and wants Mommy--or does she?

She's fully in come-close-go-away-hold-me-don't-touch-me mode. She doesn't want to be put down and she doesn't want to be held. She just cries and throws one tantrum after another, whining and begging to be picked up only to immediately want down again. It usually culminates in throwing herself on the floor, screaming or moaning. Often when she finally does have a BM (and they've been abnormal) then she feels much better after that. But this can go on for hours, several times a day.

Today she's extremely tired and lethargic between tantrums. She was sitting with her head at an odd angle for a long time this morning, eyes half closed, looking like she was going to fall asleep sitting up. She didn't want her sisters anywhere near her, either.

I think I've narrowed the current trigger down to two likely possibilities: cane sugar, her reflux medication, or (as it seems likely at the moment) both. I need to do some trials with those two items, keeping careful records and taking before and after photos of the rash on her face.

It seems so unpredictable sometimes. She will be perfectly fine, happy, energetic and social until suddenly something triggers this reaction.

Then all of a sudden we're trying to remember what her face looked like 20 minutes ago and when the rash intensified. We'll be trying to figure out if the tantrum she had earlier was just a normal tantrum, or at what point she moved from normal tired toddler behavior into the over-the-top behavior that is typical of her reactions when she's in pain or has been exposed to an allergen. We're caught trying to discern whether she's crying and making the potty sign yet again because her digestive system is in knots or just because she doesn't want to go to bed.

When the allergy behavior hits the extreme, it's easy to identify. And, of course, the rashes help. But there's some point between normal 18-month-old behavior and the clear reaction behavior where the waters are very murky. Then it's so difficult to know how to respond to the situation.

Keeping the detailed records of her food, behavior and other variables is highly time-consuming. But it seems to be be something were going to have to make a regular part of our life--at least for the time being.

I keep thinking that eventually we'll figure out what all she can and can't have, and we'll be able to stick to that and keep things at a fairly good baseline. But then she develops a new allergy to something that seemed fine a week or two before, and I wonder if it will ever normalize. Or something she's seemed to tolerate well finally builds up to the point where she reacts to it.

I get so frustrated with it all sometimes.

Meanwhile, I'm wanting so badly to spend time with the older two girls, play with them, cuddle them, read to them, do school with them. But there's Baby E, desperately needing a nap, wailing and drooping, giving the false impression that if I just work on putting her down for a nap for a few minutes then she'll go to sleep and I can focus freely on the other girls. Then the few minutes turns into three hours, and I'm pulling out my hair.

When Baby E is not having a reaction she is so easy to put down for a nap, but her misery turns the routine upside down. I'll get her all ready for a nap, feed her lunch, read a story, sit her on the potty, and put her in bed--and then the diaper is full of diarrhea and we're in for a long wrestling match of her screaming and flailing while I clean her up and then perhaps have to give her a bath before I can again attempt to put her to bed.

Sometimes I find myself wondering why God didn't give me Baby E as my first child, so I could focus on her without taking away from other children. But I don't think I would have been able to handle her issues at that point in my life, and I certainly wouldn't want to not have the other two girls. There's not one of my children that I would give up or want to change the timing of.

I'm so torn. I don't know how to balance it all. I can only leave her screaming in her crib for a few minutes at a time, but I can't just let the other girls' needs fall by the wayside either. I end up struggling with her for hours, trying to get her to take a nap so I can focus on the older girls.

But if and when she finally falls asleep, I know I may not have more than 30 minutes to an hour before it all starts again. She doesn't nap nearly as well on the days she's like this. So then do I take a shower, or just go without for another day? Do I try to catch up on some housework and cook the next meal, or do I focus on AJ and M&M--reading to them, helping them with a craft, or doing some homeschooling with them?

Do I let my kids go hungry, leave them without clean laundry to wear, let them go without my time and attention, or neglect the one that's sick and in pain? It's not a pretty choice, no matter how you cut it. Especially when it's a choice that has to be made day after day.

Right now the girls are just finishing eating a snack. I chose to sit down while they were eating and have a few minutes of quiet letting off steam with this blog entry for my own sanity, but I don't know if that was the right choice or not. Maybe it will help keep me from snapping at them and spinning my wheels; maybe it was just a waste of time. Who knows?

I do know that the few minutes I spent in prayer this morning before facing the day weren't a waste of time. I'm sure that taking time to center and calm myself and lean on my Father for strength helped me get through the morning much more successfully than I would have otherwise.

Now I'm going to try to do some school with the girls, and hopefully start cooking dinner. There's very little chance that I can also manage to clean up the kitchen and do laundry, but I'll try.

All I know is that at the end of the day there will be things that seem to be priorities, that are on the absolutely-must-not-be-neglected list, that remain unaddressed. Deciding which things they should be is my daily puzzle.

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Superbowl Party

We had a good time at our friends' house for the Superbowl party last night. It was just our church home group (a.k.a. care group)--three families at the moment.

When DH told Malamute Rescue Couple that I didn't want to have Baby E around corn chips, they were quite willing to substitute potato chips instead. There was no popcorn, either. Just lots of cookies, potato chips and dip, sub sandwiches and other snacks.

Nothing crumbly and corn-based, but of course nearly everything would have had corn and/or soy derivatives in it. We just tried to be as careful as possible about cross-contamination and exposure.

I brought some allergy-safe food to share, and everyone tried to be careful about not having traces of other foods on their hands when serving themselves from our safe food. Malamute Rescue Lady even swept the floor after most of the eating was done.



AJ and M&M had a fabulous time playing with the four kids close to them in age while the adults watched the game and visited.

Baby E slept in DH's arms for most of the game. When she finally woke up, she was in a great mood.



Baby E was especially excited to see her friend Baby H, who just turned 1. The two girls are already great friends.

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E kept making "baby" signs toward H, but when we would ask her if H was a baby, E's reply was an emphatic "NO!" I'm not sure if she was saying "baby" to refer to H, or if she was trying to tell H about her doll.



DH and Malamute Rescue guy had fun helping the two babies interact with each other.

The men in our care group are such tender, caring, involved fathers and husbands. They really encourage each other in that. One of them has a bumper sticker that says, "Real Men Love Jesus." These guys truly try to live out in their lives the idea that "Real Men Love." Of course, it's the women too, so I guess I should say "Real Christians Love."

We've been talking a lot in our church services and in our home group lately about the commandments to love God and each other, and how those two are intertwined. I hope it's true that one of the greatest signs in our lives that we are Christians is the love we show to those around us. That's certainly our goal, as individuals and as a group.

One of the most valuable things about our home group is the sense of family. Loving and supporting each other, encouraging each other in our spiritual walk and in living Christlike lives, holding each other accountable, praying with and for each other, helping each other in tangible ways, and studying the Bible together. That's what it's all about. It's a growth process, of course--one I'm really glad to be a part of.



Speaking of loving one another, Baby E even shared her precious doll with Baby H--something she doesn't do often. Baby E and Baby H kept handing it back and forth, cuddling and kissing it. H really loved the doll. After Baby E had been letting H hold her doll for a while, Baby H grabbed Baby E and gave her a big kiss. It was awfully cute.

Shortly after we got home, Baby E started saying "ow" and patting her head and her tummy, and then she had diarrhea. She slept through the night, but this morning she's grumpy, tantrumy to an extreme, and uncomfortable in her head and tummy. The mild rash on her cheeks has been a near-constant this week, so that's nothing new. But her behavior is consistent with a mild allergic reaction.

Even though we tried to be as careful as possible, apparently she got into traces of an allergen. It could have been from the floor, from one of the other kids' hands, or something like that. With that many people and that much food around, it was pretty much inevitable.

Short of keeping her in a bubble, it is truly impossible to keep Baby E from ever being exposed to trace amounts of her allergens. But we don't want her health issues to isolate her and keep her from ever doing anything. We want her to have as normal a life as possible--playing with friends, going places, sharing her toys.

We mimimize the risks as much as possible, and maybe we need to look at doing more handwashing (of both Baby E and the other kids) on occasions like this. But we have to balance the risks with the need for Baby E to be able to interact socially with people. It's not something we would do every day, but occasionally I think it is worth risking the likelihood of a mild reaction for Baby E to be able to take part in a valuable life experience.

Even though she feels miserable today, I think Baby E would say that getting to play with her friends last night was worth it.

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Riding the Night Mare

I had nightmares all night last night.

I dreamed we went to the Superbowl party after church today, and everyone was eating popcorn and corn chips. The smell of popcorn was heavy in the air. The floor was littered with corn crumbs. Baby E was wandering around trying to pick up the crumbs and eat them.

I woke up before the allergic reactions started, but I knew they were coming. In my mind's eye I saw her breaking out in a rash, flailing and screaming in pain, perhaps struggling to breathe as her face swelled.

This is the stuff of nightmares in my world.

Unfortunately, it's also the stuff of reality in the waking world.

If they have corn chips and popcorn at the party this afternoon, Baby and I will be leaving.

Baby E's Reactions

Baby E has been having reactions off and on all week . . . fussiness, discomfort, headaches & stomach aches, rashes on her cheeks and tummy, etc.

She wouldn't eat the tomato dish we had earlier this week . . . she took one taste and then kept spitting and sticking her finger down her throat and gagging herself. I've never been able to get her to eat anything with any kind of tomatoes in it though. I don't know if she didn't like the flavor or if she has a problem with tomatoes. It's so hard to figure these things out.

She's been in orange and red levels fairly often this week, for the first time in weeks. And she's been amazingly short-fused, throwing tantrums, hitting and screaming with little or no provocation every few minutes some days (mostly the days I didn't blog, LOL).

Her rashes happen frequently, but the other symptoms have been less common lately. That in itself is amazing--a couple of months ago this "bad week" for Baby E would have been a good week, comparatively.

Still, her mild to moderate allergic reactions are pretty much life as normal here. I'd like to get her to the point where that isn't the case.

I think I did figure out what was causing the reactions she was having earlier this week.

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I found out that Sunbutter and Trader Joe's brand sunflower butter both have unlabeled added soy (mono- and diglycerides in sunbutter, tocopherols in the TJs brand) even though they have stringent anti-cross-contamination procedures in the factory to keep soy from getting into the sunbutter where they are roasted.

The roasting belt is the only overlap of shared equipment, and they have pretty extensive cleaning processes between roasting different things. They even have special machines and procedures to minimize getting any allergens in the air.

I had been giving the TJ's brand a try after the reassurances from TJ's about the manufacturing, and after they assured me there were no soy products or anything unlabeled added to the sunflower butter.

They were wrong, as I found out once I actually tracked down the manufacturer and talked directly to them about it. Just getting traces of it in my milk was enough to bother her--unless, of course, she's allergic to sunflower seeds. Who knows? Ugh.

Of course, it could also be the yeast-free bread we'd been trying again, or the chocolate. Or the small amounts of cane sugar.

Apparently a day or two of no observable reaction is not enough to tell whether something is really bothering Baby E. We're going to have to take all those things out of our diet again for a few weeks, and then stick to introducing/trialing just one new thing per week. That way we'll catch the delayed or dose-related reactions that take a few days to build up. As it is, allowing only 2-3 days between trying things just isn't working.

Last night and today she's definitely reacting more strongly to something new, and something in my milk. We both ate the same things yesterday, so whatever it is she would have gotten both directly and in my milk.

She is fussing and squirming a lot while nursing (one of her classic symptoms), has a mild rash on her cheeks and tummy, is saying "ow" a lot and banging on her head or tummy, insisting she needs to use the potty every few minutes but not going (stomach cramps, perhaps?), fussing constantly, and was awake and uncomfortable for most of the night (DH got up with her--bless him!).

I'm guessing it could be the millet--a grain which (like most grains) is related to corn. Or it could be the cane sugar or something else in the lollipops--sugar cane is also related to corn.

Quite possibly whatever she's reacting to is what I'm reacting to also. I still don't feel well this morning. That and the fact that Baby E is still having issues with my milk tells me that whatever it was isn't yet out of my system.

Now Baby E is napping and DH just got up so I can go back to bed.

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