Tuesday, January 30, 2007

Baby Signs

Baby E is saying a lot of words now, but it's still helpful to use sign language with her. For instance, book, sock, duck, quack and chicken all sound very similar, so if she's saying "uck" and making the shoe sign, we know she's saying sock.

She picks up both signs and words almost instantly now, so teaching her is just a matter of showing her what they are and helping her use them a few times.

I think today I'll teach her how to sign ball since any kind of ball is one of her absolute favorite toys lately.

    Sign language words Baby E is currently using:

  • Eat/food

  • More

  • Chicken

  • Drink

  • All Done

  • Please

  • Thank you

  • Goodnight (this is her own invented sign)

  • Sleep

  • Tired

  • Baby (she also uses this sign for doll)

  • Book

  • Shoe

  • Duck (bird)

  • Spider

  • Elephant

  • Potty

She also acts out a lot of words or phrases such as dance, hairbrush, toothbrush, spoon, wipe, tissue, and feeding the baby. And, of course, she waves hello and goodbye.

Labels:


2 Comments

Sunday, January 28, 2007

Notes to Self

  • Never try to take three young children who are already tired and grumpy grocery shopping just at bedtime. Especially when the youngest has decided she won't nurse with any distraction around, but is miserable because she hasn't nursed for 5 or 7 hours (as opposed to her normal once-every-one-to-two-hours habit). And when the older two are bored, whiny, hyper and constantly bickering.

  • Call the dentist in the morning. And try not to panic. Because this habit of fillings falling out and teeth crumbling is the stuff nightmares are made of, not real life. Right?? Right???? Three in one week has got to be the limit, we hope. How can a person who rarely eats refined sugars and brushes/flosses regularly have so many problems with her teeth?

  • Find a calcium supplement with none of the relevant allergens. What? Who's laughing? It's got to be possible, hasn't it? Somehow?

  • Go to bed, and try not to think about the fact that a certain nearly 18-month-old will be awake and crying over the refusal of "ILK" in a few hours.

  • Especially try not to have nightmares about crumbling teeth all night like you did last night. We don't like those dreams, or the actual true waking version either.

  • Congratulate yourself on getting to church almost on time this morning, and then getting two weeks' worth of menus planned and spending time with a friend this afternoon. (Even if the store you went to didn't carry half the groceries you needed for said menus.) Be glad you could give DH an evening out by himself.

  • Breathe. And try to figure out a way not to snap and snarl at the kids all day tomorrow, okay?

  • Try taking time to pray and have quiet time. You haven't done that for too long. Maybe you could look forward to sitting with your Bible and a cup of tea in the morning. It might help tomorrow go better.

Labels: ,


9 Comments

Saturday, January 27, 2007

Charlotte's Web

I took AJ and M&M to see Charlotte's Web this afternoon while Baby E stayed with DH.

We loved the movie. It didn't stick to the book perfectly, and it left out quite a few details I was disappointed to miss. But I think it caught the spirit of the story and told it well.

I was amazed at how much more real the story seemed, how much more I was drawn in and captured, and how new the tale felt, seeing it in live-action instead of animation. It was definitely worth the remake.

######

It did take me a while to get used to Charlotte. Spiders creep me out, and this one was pretty realistic-looking with a very close view that made her look an awful lot like a tarantula.

But I loved her voice (so much more humorous and quirky than I expected), and her warm eyes--at least the two main eyes. I was a bit bothered by the fact that Charlotte's other 6 eyes were so much smaller than the front two, and that they never blinked or changed. But that was a minor detail.

The web-weaving scenes were downright magical. I've always enjoyed watching spiders spin webs, and the movie's rendition of Charlotte's artwork was like watching a symphony in movement.

I expected to be a bit bothered by some of the jokes and choice phrases used in the movie after reading the review on screenit.com (a highly recommended resource for checking out movies, by the way). But in context, they didn't bother me at all.

My girls gasped audibly and commented in shocked whispers that "She hit him! That was BAD!" when Fern playfully hit her brother. That was encouraging given how much trouble I've been having with the two of them pushing, "accidentally" hitting, pinching and throwing things at each other lately.

The voices and tha actors gave the movie so much more color and character than the bland, predictable, soothing voices in the animated feature. I especially enjoyed the extra development of secondary characters, particularly the geese and the other barn animals. Templeton the rat was perfectly played.

Wilbur himself could have used more development of character, however. The movie didn't show his kindheartedness and his befriending of the other farm animals as much as it could have. It also gave me a bit of cognitive dissonance that he remained looking so much like a piglet throughout the movie. He looked younger and smaller than seemed natural to me by fall and winter, even considering that he was a runt pig.

I was also disappointed that some of the human characters weren't developed a little more. Fern's character seemed a little flat to me, although delightful, and we never even learned Henry Fussy's name. Farmer Zuckerman never did explicitly vocalize the fateful decision not to butcher the pig--something I kept waiting for in the scene at the fair or afterwards.

I thought the human actors did a great job of communicating a lot through their actions and expressions in a very short amount of time, though. The movie was beautifully cast and acted. The scenes with Fern's mother, Mrs. Arable, and her consultations with the family doctor were especially smile-inducing.

Everyone in the theater laughed out loud or said "aww" several times during the movie. I especially liked watching the two white-haired ladies in front of us enjoy the movie.

AJ and M&M seemed to get the jokes, and laughed right along with everyone else. It was great to watch them take in the movie and enjoy it so much. Although I was a bit worried about how they would respond to the death themes, they seemed to handle them well.

The movie didn't seem over their heads, at least for my 4- and 5-year-olds. They are easily frightened by movies with any kind of intensity (even movies most kids their age consider pretty bland), but they didn't get scared or upset with this one. Of course, it probably helped that they were already familiar with the story and knew how it ended.

AJ and M&M were riveted, much more so than with the animated version of the movie. So was I. The animated version sticks more closely to the book, but I suspect that if we owned both versions, this would be the more frequently watched.

I would definitely see it again.

Labels:


2 Comments

Friday, January 26, 2007

Library Night

I'm really liking this plan of taking the first 20 minutes after Baby E goes down for her nap to do things with the two older girls. Today M&M chose to have me paint the girls' fingernails, and AJ chose for us to make butterfly decorations for her birthday party next month.

Then AJ worked on the decorations some more while M&M helped me make dinner. She helped add the rinsed rice and salt to the rice cooker, then she carefully measured 4 cups of water and poured them in. I showed her how to push the start button, and so she cooked the rice. :)

Tonight M&M and I went out together, just the two of us. M&M wanted to go to the library. We had fun picking out books together, and M&M read several books aloud to herself.

As M&M read, a young mother there with her preschool-aged son asked me how old she was, then exppressed amazement at a 4-year-old reading so well. We started chatting. It turned out that she was a 3rd grade teacher, and the small boy was her only child.

She ended up asking me about how I taught my kids to read and how I handled a few parenting situations. Then she asked if I'd consider providing daycare for her son! I must say, I never would have thought a complete stranger would ask me something like that. I laughed and said no, but thanked her for the compliment.

It was kind of nice to have someone tell me that I was "obviously a wonderful mother and a good teacher," but I'm not feeling like a wonderful mother at all.

I've been struggling to find a balance in life, give my kids enough attention and not be short and irritable with them lately. I'm really working on getting more sleep and maintaining my own health so that it's easier for me to have the patience and energy I need to deal with them.

Little things like making sure I take time to focus on the kids are helpful, I hope.

Labels:


6 Comments

Notes

  • Blogger is trying to force me to upgrade to the new version. I had to do some fiddling to figure out how to bypass the upgrade this morning. They're not offering me the option to stay with the old version any more. When I try to post or even delete spam, it sends me to a window in which upgrading is the only option.


  • The surest way to make sure a baby stops sleeping well at night is to blog about how well she's sleeping. This week Baby E has been waking up between 1 and 3 times each night, wanting "ILK!"


  • The night-weaning commences again tonight. I'm not quite sure when or where it went by the wayside, but I want my sleep back.


  • Morning and I made quite a bit of progress yesterday. I had to quit working on decluttering the bedroom to fix dinner, but she managed to get the bathroom in there presentable. It's so nice to be making significant headway on the house.


  • I'm going to have to really discipline myself to learn how to relax and play at home again. I set the timer for two 10-minute sessions yesterday, and forced myself not to pick up anything or do any work while I was playing with the kids. My goal is to do this at least once every day.


  • AJ chose 10 minutes of coloring for her turn. I can't remember the last time I just sat down with the kids and colored for 10 minutes. Then M&M chose for us all to play Simon Says, for me to give them horsey-back rides, and for us all to dance to music for her 10 minutes. I got my exercise in that way!


  • In a few minutes a friend from church and her son are coming for a playdate. I'm going to discipline myself to actually sit down, relax and visit rather than my usual habit of doing chores while visiting.


  • I made a parsnip cake last night to serve to our guests today. It turned out amazingly well. Coming up with interesting and unique recipes is so much fun.

7 Comments

Thursday, January 25, 2007

The First Project

Morning is here now, cleaning bathrooms. AJ and M&M decided they wanted to wash windows, so I gave them paper towels and some non-toxic cleaner and let them go to town while I did the dishes.

Now I'm sitting at the computer researching corn allergies while feeding Baby E. As soon as she goes down for her nap, I promised the older girls they could each pick an activity for me to do with them for 10 minutes per activity. Then they'll have some quiet time while Morning and I tackle my bedroom.

I really want to get the bedroom decluttered, dusted and vacuumed and the bathroom in there de-mildewed. I think that will significantly cut down on allergen exposure in the bedroom.

My theory is that making the bedroom the first major project will help me get better sleep and energize me for tackling the rest of the house. Well, it makes sense in theory anyway. :)

3 Comments

Tuesday, January 23, 2007

Restoring Order

I'm amazed at how much more food it takes to feed my family these days. The fabulous spaghetti squash recipe that would have fed us for at least two meals a few months ago now barely goes around for one dinner.

At least it's a healthy dish that everyone loves and wants third and fourth servings--of squash, a normally detested food! Can't beat that.

It feels like life is beginning to stabilize.

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

Today I did a little bit of school with the kids--not a full-blown day, but at least reading, math, science (for AJ), and handwriting. We're going to try to gradually ease back into school in the next few days. Hopefully by next week we'll be settled into something of a routine.

I was even able to combine a cooking project with AJ's science lesson today. I had peeled a ginger root for ginger-pear muffins this morning, and whenever I got a minute for the next couple of hours I worked on cutting the rhizome into pieces and pushing them through the garlic press.

AJ was supposed to do an exercise in freezing water today, so instead I had her help me measure out half-teaspoons of the crushed ginger juice and freeze it in an ice cube tray for future use. My ginger always seems to go bad before I use it all. Hopefully this will be a good solution. AJ certainly enjoyed the project. Tomorrow she's supposed to observe steam--I wonder how I can fit that into cooking dinner?

Speaking of tomorrow's dinner, I have a whole free-range chicken to cook. Does anyone have a favorite recipe or method to share? (Requirements: no soy, coconut, corn, dairy, legumes [beans/peas], apples, bananas, grapes, oats, eggs, refined sugars [honey is ok], premade processed items [i.e. no cream of chicken soup], yeast/mold/mushrooms, vinegar or other fermented products.)

Baby E is usually taking a decent afternoon nap now, so that gives me a chance to breathe. I had been sending the older kids to their rooms for quiet time so I could nap also. But the last few days I haven't been quite so fatigued. It's nice to be able to spend that time doing things with the kids or catching up on chores instead of crashing in exhaustion.

Between things I got 4 loads of laundry washed and put away, and the kids and I worked a bit on organizing things around the house. After nap time we ran a few errands and cooked dinner.

DH got home just as dinner was ready. As we ate I read aloud a letter from Selemani, the child we sponsor through Compassion International. The family sat around the table to compose a reply together, and then we worked a bit on planning AJ's birthday party.

After that the kids did their evening chores, had baths, and went to bed. Even Baby E was asleep before 11. DH and I even got to play a quick game of Settlers of Catan.

It all seems so deliciously normal. Our home and routines still have a long way to go, but we're steadily making progress at restoring order and functionality to our life.

As I was telling DH tonight, I think we're on the path to getting out of crisis mode and moving toward normalcy.

That feels wonderful.

8 Comments

Reading Levels

Here's a page with a couple of handy tests for assessing your child's reading level.

I tested both MM and AJ today, trying to get an idea of where to jump in again with schoolwork. M&M scored between 3rd and 4th grade, and AJ is between a 5th and 6th grade reading level. I don't think their comprehension is quite that advanced, though . . . they can sound out and pronounce words without necessarily knowing their meanings.

We started off the year with M&M just beginning to sound out words, and AJ reading at about the level M&M is now. I'm trying to decide whether to just pick up where we left off with most of the curriculum and just tweak it a bit, or whether I should try to change things significantly. Decisions, decisions.

I think today I'll start them where we left off with most things and see if they seem to be bored or interested. Then I can adjust from there.

4 Comments

Monday, January 22, 2007

Summary/Update on Baby E

Baby E is doing worlds better.

The tests for celiac disease and most other things came back negative. She has no damage to her esophagus or GI tract, which is very good news.

Baby E does have severe reflux, aspiration of thin fluids (water going down the tube toward her lungs when she drinks), anemia and a lot of allergies. The various medications, dietary changes and therapies are helping a lot.

We've found a great pediatrician, GI specialist and allergist, and will also be seeing a speech/swallowing therapist and a nutritionist.

They are still running a few tests and waiting for results to come back. One test showed that she is not able to digest a sugar, and we're waiting to find out which sugar is the problem. She is still having quite a few allergic reactions, so we are doing more allergy testing too.

Overall, Baby E is doing wonderfully. She started gaining weight again when we removed all corn derivatives from her diet several months ago. She has not had a bad screaming spell for at least a month or two, and she is now generally happy, energetic and even sleeping through the night regularly. Praise the Lord!

Thank you so much for your prayers and support during these months of worry.

12 Comments

Good Stuff

Well, it seems that we're finally really over our illness. The kids and I are still coughing occasionally, but we haven't had any fevers or significant symptoms for days.

I have still been feeling quite weak and ill, but I think that's largely because I lost weight while sick and was down to 97 lbs. I've been working hard at trying to gain weight the last few days (frequent meals! beef & quinoa pilaf for breakfast! muffins! homemade French fries!) and have managed to get back up to 100. Hopefully that will help both my energy levels and immunity.

I broke a piece off a front tooth last night (ugh), so "get" to go to the dentist today. I'm trying to catch up on some dishes and laundry, and am hoping to start back into more formal/structured homeschooling with the kids.

Baby E is still sleeping through the night, and seems to be feeling pretty good. She doesn't say "yeah" any more. Now it's "ess!" She's talking and using signs more and more fluently, requesting specific books by name when it's time to read, and wanting to make her dolls do everything the rest of the household does (brush teeth, brush hair, eat, change into pajamas at bedtime, etc.).

E loves books, and lately she's been paging through even pictureless books pointing at the words and wanting to know about them. I'm guessing it won't be long before she starts picking up letter names and sounds. I'm teaching her the sign language letters along with the sounds the letters make, so it will be interesting to see which she picks up first.

The older girls' favorite pastime lately is reading the encyclopedia. We have an old set of encyclopedias we got at a garage sale a few years ago--not the ones geared toward kids, but the normal kind.

The girls will decide what they want to learn about (ants, tigers, how bees make honey, etc.) and pick out the correct volume. Then I'll help them find the right page and they'll excitedly read all about their chosen topic, then page through looking at other articles.

It amazes me that my 4- and 5-year-olds are reading the encyclopedia on their own. It's fun to see them so excited about learning.

2 Comments

Saturday, January 20, 2007

The New Allergist

When the allergist walked into the room on Thursday, I was surprised. Dr. O didn't look or carry himself like a doctor at all.

Although he didn't look at all like my dad, the way he dressed and acted reminded me of Dad--just a regular guy in regular clothes, relaxed and friendly. I felt immediately at home with him.

I tried to summarize Baby E's history for him, and told him the three reasons I was there: To discuss whether further allergy testing might be appropriate, to get advice about managing Baby E's allergies, and to get some help determining whether or not we really needed to be avoiding apples.

He listened carefully. He said that he could certainly help us with those things, and that it seemed that more allergy testing would be appropriate in Baby E's situation.

Then he started explaining allergy testing to me.

###########

He said, "We can do a skin-prick test or an IgE blood test--the one I use is ImmunoCAP." He explained in layman's terms the pros and cons of each, and what percent accuracy each had in sensitivity and specificity.

Dr. O said that a positive result accurately identifies the presence of IgE antibodies, but that the presence of antibodies doesn't necessarily tell us whether there are clinical symptoms with that food or not. So it has to be interpreted in light of the patient's history.

Then he said, "A negative result is, oh, maybe 95% accurate. Now, you might think 95% is pretty good, and it is. But if you have a negative test result to a food you have a reaction to, that doesn't help you much. Statistics can be useful, but they don't tell you a thing about the individual patient sitting right there in front of you. The only REALLY accurate way to diagnose an allergy is through clinical history and symptoms."

He went on to say that with most allergies the triggering cause is fairly obvious, because a reaction happens pretty quickly and consistently after eating a certain food.

But, he said, then you have the whole group of delayed-reaction allergies, like with many cases of food-induced eczema.

"It's when you eat a food and get symptoms three days later that it's really hard to figure out," he said. "You're thinking, 'What did the kid eat three days ago? The same thing he eats every day. Now what?'"

"And a lot of allergists will do a skin-prick test, and when it comes back negative they'll say that means you're not allergic to that food. But you just can't diagnose eczema that way. If you remove the food from the diet and the eczema goes away, then you know you've got an allergy."

I just sat there and listened, smiling and nodding. Finally, I told him that it was refreshing to have an allergist who was more interested in the individual than in statistics. That the other two allergists we'd seen had taken the attitude that if something was rare than it must not be what was happening.

He said, "Well, that's silly. That doesn't make any sense."

I agreed.

He talked quite a bit about eczema . . . I'll post about that in a separate post for those who are interested.

In the end, we ended up deciding to do blood testing for a bunch of different foods, to try to get more information on what might be causing Baby E's reactions. Particularly we want to test for yeast, coconut, palm kernel oil, and a number of other possibilities we suspect. We're going to test vanilla, for example, just to try to pinpoint whether it is vanilla itself or the corn-derived alcohol in most vanilla extracts that may be a problem.

He also wrote a prescription to have Benadryl compounded, and for a second set of epi-pens. He thought that with Baby E's level of sensitivity it would be wise to have another set around, just in case. He also gave me a lot of information about allergies in general and coping with them to read. We're going to follow up after the test results come back.

Dr. O seemed to like and enjoy interacting with all three of my kids. When AJ coughed, he suggested we have her evaluated for asthma. With allergies on both sides of the family and all three kids having symptoms that could be allergy-related, we'll probably have some allergy testing done for everyone.

Just as we were about to leave, the allergist said, "Baby E is the first person I've seen with such extensive issues like this. I've never seen anything like it before, ever."

But the way he said it wasn't as though he didn't believe it or found it an annoyance. No, he said it more in the tone of a kid who had just been given a toaster to take apart. He said it as if he was fascinated and eager; almost as though he felt it was a privilege to have Baby E as a patient.

And that, my friends, is why I think we have finally found the right allergist.

15 Comments

Eczema

The new allergist told me a lot of things I'd never heard before about eczema.

He explained that in most people with eczema, the immune system is constantly on high-alert and that anything that causes the immune system to kick in can make the eczema flare up. So a flare-up could be from exposure to an allergen, or it could be something as simple as getting overheated or catching a cold.

He called it "the itch that rashes," saying that in many cases the itch comes first and that possibly the child's scratching causes the rash in a secondary manner.

He said some things I want to read up on more. For instance, he talked about a bacteria on the surface of the skin that really bothers a lot of people with allergies and makes their skin itch.

#########

He said that, while 13 years ago the advice most doctors were giving about eczema was to avoid bathing too much to keep from drying the skin, that recommendation has changed. Now they have found that bathing 1-2 times per day with a mild soap and following that up with something to seal in the moisture helps more than anything else, because it washes off the bacteria that's causing the itching.

He told me about a patient who had terrible eczema, and the mother said "I think he's allergic to [neighboring state]. Every time we go to visit relatives in Florida and Texas, the eczema goes away. Then when we get back here it comes back."

The allergist leaned back in his chair, his eyes twinkling: "What does he do in Florida and Texas? Go swimming. He's in the pool at least a couple of times a day. The chlorine is getting in there and killing the bacteria, and then they're washing him all off carefully after they get him out of the pool, too. No wonder the eczema is better!"

"So I told her to do the same thing here they do in Florida and Texas--give him baths a couple of times a day. The next time she comes in she's all, 'Doctor, it's amazing! The eczema is completely gone!'"

I'm not sure how all that connects to food allergies, or if it applies mainly to non-food-related eczema. But it was certainly interesting. He advised me to bathe Baby E more frequently to help skin flare-ups, saying that Dove or Cetaphil were the most commonly-recommended products but that we'd want to check that they don't contain Baby E's allergens before using them.

I know several of my readers have children with eczema, so maybe this will be helpful to some of you.

2 Comments

Friday, January 19, 2007

Norovirus?

Still sick. I thought we were all getting better yesterday, but after lunch AJ and I started feeling pretty bad again, and in the afternoon and evening Baby E was tired and fussy again too.

It seems that what we've had is not two separate illnesses. My mom told me that there's a version of Norovirus going around that starts out like a respiratory influenza, then moves to intestinal symptoms. Supposedly it's long-lasting (2 weeks?) and then it's still contagious for three days after you get well.

I'm pretty sure that's what we have, though the GI part didn't hit us as hard. Poor Morning caught it from us and she has had the same symptoms we have.

It's been more than a week now and I'm still completely wiped out and sick. Now I think I may be getting an ear infection too, although it's hard to tell whether the pain is actually in my ear, jaw, glands or some combination.

The kids do seem to be feeling better today, though Baby E is still a bit tired & fussy.

I'll be glad when this bug is over.

2 Comments

Thursday, January 18, 2007

Short sentences.

We're still feeling under the weather.

The allergist appointment was great today. More later.

3 Comments

Wednesday, January 17, 2007

Crawling Under a Rock

*Asterisked paragraphs edited to make them communicate better what I was trying to say.*

I'm feeling tired and discouraged tonight. Having an intestinal virus right on the tail of a respiratory flu virus, right on the tail of bad colds, ad infinitum to back before Thanksgiving, is getting a little frustrating. We never seem to completely recover from one thing before the next hits.

Mainly, I'm feeling like a dolt and a jerk.

I wrote that series of articles about allergy diagnosis and testing in a bad frame of mind. I was angry when I wrote it. For an article purporting to be fact based, that is not a good idea. Not good at all.

Although there are some useful facts in the articles, as a whole the series is useless--or at least several of the articles. It's not an impartial, fact-based look at the evidence. It's a vent about how bad allergists and doctors are, how they don't know what they're talking about, and how they treat people badly.

I took my own experiences and those of a number of other people I know through real life and message boards, and formed a hideously low opinion of allergists.

I wrote a post purporting to prove how bad allergy testing and treatment protocols are, taking out my frustrations in writing. It turned into a post that used so much hyperbole and emotionalism that any facts I presented faded into insignificance next to my dramatic overstatements about what they meant.

I don't think I actually had the basic facts themselves wrong, but the way I presented them did not explain or interpret them accurately. I know how to research and write better than that; I really do. But I totally flubbed this one up.

* I do want to clarify for everyone that I don't regret telling my stories and those of others. I think that is valuable and important. What I do regret is the blanket statements and value judgements I made against doctors and allergists as a whole, based on a few bad experiences, and the fact that I wasn't more careful (particularly in the first article about allergy testing) about how I presented the information from my reading.


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

I didn't get hit with the clue stick until an allergist responded to my post. * At first I couldn't figure out why she seemed to have such a low opinion of my articles. I began to go through and write a refutation for each of her criticisms.

* Although she did have some valid points, at first I felt the criticisms were inaccurate. Then I realized that the way I communicated and used so much hyperbole and emotionalism did in essence end up misrepresenting the facts somewhat.

For instance, I had lumped some things together that I should have differentiated, such as the around 50% specificity but more like 80-98% sensitivity of skin prick testing, or the fact that SPT has as low as 15% or worse sensitivity in diagnosing atopic dermatitis caused by certain foods. Still, I feel that even up to a 20 percent margin of error is far too large to take a stand that a single skin test (especially with a wheal in the 2 to 5 mm range) proves that a patient is not allergic to something when they have a clinical history of reacting to it.

There are a number of sources stating that anaphylaxis is underdiagnosed, undertreated and underreported, but I linked to only one. My support was largely anecdotal, which makes for a good story but isn't very convincing from a statistical standpoint.

I realized that I wasn't being specific or clear enough in my writing. I began working to remedy that.

Then I started re-reading the series of articles from an allergist's perspective.

How could I have ever thought a doctor or anyone else would listen to anything I have to say when it's presented like that?

My article series was similar to letters a lot of people write to their boss, or their next-door neighbor, or whoever else they might be really angry and frustrated by. Of course, those kinds of letters aren't meant to be sent. They're useful only in understanding and venting frustrations.

But I not only wrote the letter, I sent it. I actually submitted it to medical blog carnivals.

Suddenly I see my own arrogance, angst and abrasiveness for what it is. I feel like deleting the whole thing (if not my whole blog), crawling under a rock and never writing anything information- or research-oriented ever again.

Why didn't somebody say something before I made an utter fool of myself? At least one person (Dr. de Asis) had the guts to say something to me eventually. I am grateful for that, even though it's excruciatingly uncomfortable.

I feel that I owe all doctors (and especially allergists) everywhere, and especially those who participated in or read Pediatric Grand Rounds, an apology. I know it's highly unlikely that any of them will ever take anything I say seriously ever again. They have good reason to write me off as not worth listening to.

I am so sorry. I'm thoroughly ashamed of myself.

This frustration with allergists is new for me, and only reached its full strength a few weeks ago. That's also when I began researching allergy testing and treatment.

Until this winter I had been willing to, for the most part, trust doctors of all kinds and mostly accept their evaluation of things. I figured they were more likely than not to know what they were talking about, and certainly knew more than me.

We've had a lot of frustrating experiences with pediatricians in the course of Baby E's life. I've had a lot of frustrating experiences with doctors in my own life, both as a child and as an adult. When you have a strange unidentifiable illness, but aren't deathly ill, and the doctors throw up their hands and tell you to just live with being sick, it's hard.

In October through December of 2005 we had a whole spate of really bad experiences with medical professionals--particularly the GI specialist and the allergist. Almost unbelievably bad experiences, in some cases. Then some more frustrating experiences with nurses, radiologists, anesthesiologists, and more various medical professionals of various breeds. Then another allergist. I had a bad experience with my own doctor, too.

Since we did manage to find a pediatrician and a GI specialist that were excellent and that we enjoyed working with, I was able to get past my angst about most of the medical profession fairly quickly.

But with the allergist it was another story.

Even with him, it wasn't until well after our last appointment that I started really questioning the approach he was taking. Part of the reason for that was that our pediatrician, whom I do trust, strongly disagreed with several things the allergist said and the approach he was taking.

It wasn't until the allergist completely disregarded a truly severe allergic reaction that included multiple symptoms of anaphylaxis--diagnosing the reaction as unimportant or non-existent without even seeing or talking to me about it--that I really got frustrated.

Both board-certified allergists Baby E and I saw talked a lot about statistics, and seemed to base decisions on those rather than on our specific situations and history. Neither, I felt, took seriously the questions I asked or the symptoms I described. Rather than taking the time to explain the reasons behind their decisions, they simply said things like "nobody's allergic to rice" or "adults aren't allergic to milk" that I knew to be untrue. That frustrated me.

With our main allergist, I feel that I got off on the wrong foot with him for a couple of reasons:

When I first saw him to treat me, I gave him a copy of a list of all my symptoms that I had written up for my general practitioner doctor. I didn't feel that I had the expertise to separate out all the allergy symptoms from the non-allergy symptoms. So I thought it would be better just to give him a copy of the list (even including the symptoms that were clearly from the family Raynaud's syndrome or other such causes) and explain to him that I knew they weren't all allergy symptoms, but that I hoped he might be able to figure out which ones might be.

I had also read advice to bring to a first allergy appointment a list of everything first-degree family members are allergic to, so I did that. It was an extremely long list. I also made a list of foods I believed or suspected I myself was allergic to, which was much shorter.

Between all of them, those three lists were probably ridiculously long. I think that gave him the impression that I was either a hypochondriac, or expecting him to treat everything on my list of symptoms, even though I explained that wasn't what I was expecting at all.

Also at that appointment, I told him that I believed Baby E was reacting to very refined corn derivatives. But at that point I didn't have clear evidence or data. It was more of a suspicion, and combined with my frustration that she was still having reactions and my overwhelmedness at trying to learn how to completely avoid corn, I teared up a bit when talking about it and didn't communicate very clearly.

He did not believe me about the corn derivatives, and still does not to this day. He thought it was silly to think anyone would be THAT sensitive to corn, especially Baby E since "her welts weren't that big, so she can't be that allergic."

He flat-out refused to even consider or look into prescribing an allergy medicine that avoided those corn derivatives. He also told me that I was overreacting by avoiding soy lecithin and other "non-allergenic" soy derivatives, and that I was going to "make [myself] crazy trying to be so obsessive about it" when there was no need for that.

I felt that his demeanor toward me completely changed that day from what it had been at Baby E's first appointment a few weeks before. From then on he interacted with me in a much more patronizing manner. He began treating me like a paranoid person who overreacted to everything, and refused to take anything I said seriously.

At the next appointment, in October, Baby E had been in a screaming, flailing red or purple level for weeks and had just finished a 3-day-straight screaming jag. Another doctor we saw had said it was almost certainly from her allergies.

The allergist said it had nothing whatsoever to do with allergies, and told me I couldn't "just come running in to see him all the time like that" (that was our 3rd appointment in a 4-month period, each a month or two apart).

I broke down and cried in his office, telling him that if neither he nor the pediatricians could help Baby E, I didn't know what to do. I think my crying made matters even worse. He lectured me about how I needed to stop worrying about her fussiness and that I couldn't expect her to be as easy-going as my first two children.

By that point I'm pretty sure he had written me off as an overemotional, hypochondriac crazy lady who was imagining allergies behind every bush.

We have a chance to start over again with a new allergist in the morning. I hope we can start off better. I trust the doctor who referred us to him. I have hope that he will take a wise and knowledgeable approach, and I'm prepared to respect him. I have a specific set of questions, good evidence and documentation to explain Baby E's reactions, and slightly more knowledge about how seeing an allergist works than I did the first time.

At least I got the anti-allergist angst out of my system before seeing him. I feel quite deflated now.

12 Comments

Tuesday, January 16, 2007

Better and Worse

I definitely seem to be recovering from the virus now. My cough andmost other symptoms seem pretty similar to those of the rest of the family now. They've all been over the worst of it for some time now, but a mild cough and congestion seem to keep hanging on.

Now, however, we all have a bit of an upset tummy and no energy whatsoever. M&M seems to be the only one escaping so far, although she's acting tired and complaining that her legs hurt again today.

Nobody's actually vomiting, but nobody feels like eating or doing much of anything else. Except for M&M, who keeps climbing on everyone begging them to play with her or take her outside to play in the snow (3 or 4 inches and growing!). Both of the older girls have spent most of the day lying in their beds reading library books, but now M&M is going stir-crazy.

I feel much better than I have for the last few days, though. I'm just worried about the kids, and so tired of having a sick family.

Baby E is acting strange and has had a flare-up on her cheeks again the last few days. I don't know how much of it is allergies and how much is illness. We're supposed to meet with the new allergist in Neighboring State on Thursday; hopefully the roads won't be too bad by then.

5 Comments

Monday, January 15, 2007

Recovering

I had planned to go to the doctor if it didn't get better by today, but the cough is quite mild & infrequent now. I think I'm on the tail end of the illness, I hope.

Mostly I'm just extremely tired, achy, congested in the head, and so weak I can barely lift Baby E, much less hold her while standing or carry her for any length of time. I'm tireder now after sleeping all day than I was earlier in the day.

DH didn't end up going to work today, and took all three kids with him when he had to go out. He is going to have to go back to work soon, though. He already took a lot of time off work when he had this illness.

I still feel so sick and I have a history of slow recovery after illness, so I'm not sure what we're going to do. I'm sure we'll manage somehow. I'm just glad nobody else in the family had this bug as severely as I got it, although DH's case was pretty bad. The kids got off much more easily.

I'm utterly exhausted now just from sitting at the computer for a little while. I'm going back to bed.

4 Comments

Not a virus we want to share . . .

I'm quite a bit better today. I'm still sick, and very tired and weak, but the cough and fever are improving.

DH is staying home for at least part of the day just because I feel I'm too weak and tired to handle the kids for the whole day alone. He'll probably go to work this afternoon, and will be gone this evening. Hopefully I can manange.

Right now I'm still sleeping a lot. I don't feel well by any means, but at least I don't feel like a dissected frog today.

Of course it doesn't help that AF decided to arrive just exactly now, and I'm now all of 99 lbs. after being sick for several days--and that at a time when I normally weigh a few extra pounds due to water retention or something like that.

Below is a detailed description of some of the symptoms of this illness. I started to write it as a reply to Shinga's comment about chronic coughs, but it was so long I decided to put it in a new post.

Also, this way I can put it below the fold so people can skip it if they like. I promise you, there is nothing other than gory details of virus symptoms if you click the "read more" link or read past the ### signs, so feel free to skip it. You won't miss anything important. :)

This was how I felt much of the time the last few days. I'm much better today.

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



I'm not sure if this is what would be considered a chronic cough or not. I don't normally have a cough when I'm not sick. What exactly is a "chronic cough", anyway?

The coughing spells happen maybe one to four times an hour. They are the result of thick, stubborn phlegm around my bronchial cords and in my throat rather than just throat irritation, I'm pretty sure.

They are violent enough that they make my bones hurt as though I'm on a rack--especially my ribs. At one point I was coughing up traces of blood, but only that once.

It's hard to inhale after coughing out. I end up gasping for breath and feeling like I'm dying, but if I can cough up some mucous then it's much better. If I drink hot liquids it seems to help break up or wash down the mucous so that I don't cough as much or as severely, and I feel better. Sometimes I can get some relief by clearning my throat or other methods, but mostly that's pretty ineffective.

I had shortness of breath even when not coughing for a while, but that's better today. It was affecting my talking and walking, forcing me to pause often to catch my breath. The rattling in my chest seems to be going away, too.

I feel freezing cold even though I have a fever. This results in much perspiration and teeth-chattering with violent shivering.

After I went out in the cold I didn't have another coughing spell for quite some time, and they seemed milder after that. Maybe it was just a coincidence in timing, or maybe it was the fog and the fact that I drank some water and took ibuprofen immediately after that.

We've noticed with both myself, DH and the kids with this virus that ibuprofen or tylenol actually seems to minimize the cough as well as the fever (and the aches in bones and joints) until it wears off. That seems very strange to me, and I don't know why it would be the case. The ibuprofen would take a long time to kick in, but once it did I'd have one to three hours of feeling quite a bit better and being able to be a little more active.

Whatever it is, this is certainly a nasty virus. I'm going to try to stay home at least untl I'm pretty sure I'm not contagious.

3 Comments

PGR and the Breath Spa

Almost at the last minute, I decided to submit my allergy testing & treatment post to Pediatric Grand Rounds. The host, Bryan Vartabedian, M.D. of Parenting Solved, did a nice job with this edition. The posts are always interesting to read.

Shinga, whom I "met" through PGR some time ago, has some great tips posted at Breath Spa for Kids about managing coughs and congestion. Her blog is not only interesting to read, but also a great resource. I really enjoy reading about the stories and games she uses to teach respiratory health to kids.

AJ had her own advice for me last night. "Mom," she said in her most soothing tone, "Here's what I do to try to keep from coughing. I forget about it and think about something else, and I keep my mouth closed. You could try that. Maybe it would help."

2 Comments

Coping With a Virus

I managed to get by without having to go to Urgent Care last night.

We went out last night to see if there were any OTC cold medicines I could take, but since the pharmacy in the store we went to was closed we couldn't even get Claritin-D. I guess it's kept behind the counter.

I'm managing just fine with lots of help from DH, and a few simple remedies:

  • Lots of rest and fluids

  • Tons of tissues

  • Salt baths to help with the muscle aches (I'd use epsom salts, but I don't have any. So I've been using sea salt, which seems to work pretty well.)

  • Ibuprofen. Thankfully I do have that on hand, compounded allergen-free.

  • Hot beverages--particularly homemade honey-lemon tea. The combination of the hot fluids and breathing the steam probably helps more than anything else to break up bronchial and sinus congestion.

  • Last night my lungs got the shock of going out into the ice-cold fog and standing there breathing the cold air for 5 or 10 minutes while DH maneuvered the kids into the van. Since the side door was frozen shut, he had to put them all into the back of the van through the front passenger-size door while I stood there shivering violently, waiting to get in. It was miserable, and it took me a long time to warm up, but the cold damp air did seem to help my congestion somehow.

6 Comments

Saturday, January 13, 2007

Bronchial

Still miserably ill. I think it may be turning into bronchitis. I seem to have all or most of the symptoms, but the cough and shortness of breath aren't really that frequent--though pretty bad when they happen.

I hope not, because I really doubt there's a single medicine or antibiotic I can take, and it takes days to get things compounded.

**Update:** I called my doctor, who recommended Robitussin or Claritin-D, and suggested that I go to the 24-hour urgent care clinic. I think Claritin-D is corn-free.

Eating and drinking seems to be helping break things up a bit. We don't have anyone to watch the kids and I'm not in a state to be driving myself, and it's their bedtime. I may see if I can just ride it out unless it gets worse.

1 Comments

Friday, January 12, 2007

Allergy Litmus Test

I was quite ill today, with the whole chills, fever, body ache, headache, cough thing that has been going around here. I'm the last in the family to get it.

At least my husband was able to work from home today and take care of the kids and meals while I curled into a ball in bed for most of the day. He even made spaghetti and broccoli for dinner.

Thankfully I seem to be feeling a bit better tonight. Hopefully if I rest as much as I can this weekend, I can be well enough to manage without DH by Monday.

Now that we have Baby E off the nystatin and she doesn't have a constant red eczema-like rash on her cheeks, it's becoming our litmus test for allergens.

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

The rash on her cheeks is a clear, very visible, but not dangerous reaction. That's so helpful for testing things that are "supposed" to be safe, but we haven't yet confirmed that she can eat repeatedly with no issues.

We make a mental note of what her cheeks look like before testing an "iffy" food. Then we give her a tiny amount of the food and check her cheeks a few minutes later. Her cheeks will flare up almost immediately with a problematic food, and will fade again within a few hours if it was just a trace amount of an allergen.

I gave her two Lay's Naturals potato chips (a supposedly safe brand for her allergies) this afternoon. A little while later we noticed that her cheeks had flared up.

We hadn't noticed whether they flared before or after the chips, so we waited a few hours until the redness lessened. Then I gave her two more chips.

Wa-la, her cheeks got red again. I guess we know those chips are off-limits now.

I'm wondering if it's corn or soy cross-contamination, or if she has an issue with sulfites (except that these say they have no preservatives or additives), or what. With so many allergies it's hard to pinpoint exactly which is causing a reaction.

It's sure nice to have a sort of barometer to easily tell whether she's having a mild reaction to something or not, though. I wouldn't do it on a food we though she was likely to have a bad reaction from, of course, or continue giving her a food once we verified even a mild reaction.

But for the extremely trace amounts that don't make her sick immediately but would build up to a reaction over time, it's wonderful to have a clear indication of a problem before it actually makes her significantly ill.

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 ???

3 Comments

Responding to Differences

I'm sick enough with the flu today that DH is working from home and taking care of the kids. I've found myself lying in bed unconsciously doing labor-management moves to manage the body aches. Though I'm feeling slightly better this afternoon than I was this morning, I'm eager to get back to bed.

It's a good thing I already had a post written and saved as a draft for today:

I discovered Whitterer on Autism a few months ago, and it has become one of my favorite blogs.

McEwen gives a valuable window into life as a parent of autistic children. She communicates an amazing combination of being challeged, managing to soar rather than just cope, and finding almost a sense of magic in it all.

Her accounts of the amazing hard work it is for her son to teach his hands to obey him, the process of introducing a new food ("Seven months to acquire two new foods and a blink of an eye to lose them again"), and her unflappability at her child's public reaction to the smell of fish are well-worth the read.

Andrea and Special Needs Mama have been talking about the things people say to parents of "different" kids. Moreena wrote a memorable post about the response of another mom at the park, too.

It's hard to know the right things to say, the right way to look, and how to respond when confronted with the unusual or unexpected. You know that pity is probably the last person wants or needs. They may long to just be treated normally, or it may ring hollow to them if it seems someone is ignoring an obvious disability.

Something that may be the right thing to do with one person, such as offering to help when it's obvious they're struggling with something, may be the wrong thing to do with another.

Even with Baby E's issues, I have a less-than-favorite phrase that it seems almost everyone says.

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

Most people, when they realize how severe Baby E's allergies are and how much and how drastically it limits changes our life, will say some variation on the same thing: "I could never do that."

It's not true, of course. Most people will do what they have to do. We figure out how to manage the hand we're dealt; we simply must. If we have no other options, we can do what we once would have thought was impossible.

I usually end up quoting Corrie Ten Boom: "God doesn't give us the ticket until we need to get on the train." He usually gives us the ability to manage, just barely, only what we must: no more and no less.

Once in a great while, the statement may be an expression of admiration for my ability to handle things, or an attempt to understand the difficulty of my life. But usually it's not.

In many cases it's a distancing of themselves; a refusal to try to imagine themselves in a situation that seems too difficult to think about.

In other situations it's a subtle suggestion that maybe we are overreacting; that such excessive alteration of our lifestyle really is more than they would think necessary in our situation.

At other times, and probably most commonly, it's a segue into talking about themselves: "I could never handle that. It's hard enough for me to deal with my own life. I can barely manage [fill in the blank] . . . "

Another variation of that, and probably the most strange to me, is the "better you than me" implication. These are the people that comment that it would be much harder for them to deal with severe allergies than it is for me, because at least my children are younger and thus should adapt more easily, or at least I don't work outside the home, or at least I grew up around allergies. That may all be very true, but it feels odd to have people telling me that they're glad I'm the one dealing with such difficulties instead of them.

I could point, for instance, that at least their kids are old enough not to put everything in their mouths. Baby E's young age has its advantages, I suppose, but it also complicates things significantly. Once she gets older we won't have to worry quite so much about having things containing her allergens in the house for other family members to eat. And, it will (hopefully!) become significantly easier to take her places once we're not so worried about her picking up crumbs off the floor and eating them.

There's nothing necessarily wrong with people saying "I could never do that." I don't take offense at it, but it always takes me a moment to figure out how to reply.

We run into a lot of special-needs kids and their parents these days in our frequent forays over to the children's hospital in a neighboring state. The healthy-looking "normal" appearing children are the exception rather than the rule.

Sometimes I find myself mentally guessing the conditions of the children who walk past while I'm waiting with Baby E: "That child probably has cerebral palsy. That one has Down's synrome. That one has a speech disorder. That one looks like she has celiac disease or something like that; she's so thin and frail. That one looks so healthy; I wonder what brings him here?"

But more than anything else, I notice how beautiful they all are, each in their own way.

The 8-month-old who was unable to hold up her own head had the most gorgeous sweet smile and big dark eyes I'd ever seen, even if her face was unusually small and her chin almost disappearing below her mouth. She was beautiful.

The 9-year-old child in the wheelchair had spastic muscles, unable even to smile or move her head . . . but her eyes roved around in a way that told me she was aware and appreciative of my smile and Baby E's wave.

Her short dark hair was well-cared-for, she was warmly bundled in a lovely pink coat and a handmade blue scarf, and the love between the child and her caregivers (mother and grandmother) was palpable.

It was beautiful.

The little boy with shriveled legs who was balking at riding a giant tricycle had sandy-blonde hair and a mischevious line near his mouth that told me he had a sense of fun and a spark, even though he wasn't enjoying himself at the moment. He had a softness in his face next to the potential for mischief that was beautiful.

The two sisters with curly dark hair, both about the same height, but the older one rail-thin with almost transparent skin were the most fun to watch. They laughed and played together, enjoying each other's company and tossing their ponytails. They both had lovely olive skin, bright eyes, and sweet interested faces. They really were unusually beautiful children.

But I sometimes wonder what the parents think when I say something like, "How old is your baby? What's her name? She's beautiful."

Do they think it strange when I leave it at that, or do they appreciate it? I don't know. I'm sure it depends on where they are in their own mood and journey that day.

7 Comments

Thursday, January 11, 2007

Blog Business

****Updated--I fixed the title/navbar issue--see below for details.****

DH fixed my comment-update script so that it ignores anonymous comments. This helps to cut down on having conversations show up in the sidebar as updated discussions when really it's just spam on old posts.

For those of you who aren't spammers but don't have a blogger or google account, the best way to make sure your comment doesn't get ignored is to use the "other" option instead of the "anonymous" option when commenting.

To do this, just select the "other" option and type your name, screen name or whatever you want to call yourself into the "name" space.

You can leave the "web page" space blank if you'd like, but if you put your blog address in there it makes it easier for me to come visit you.

A couple more notes:

Amy at Experience Imagination helped me figure out how to modify my template script so that when you click on "read more" from the main page of my blog:

###########

. . . you should now be taken straight to the spot where the post continues, instead of starting all over at the top of the post again. Thanks, Amy!

That brings me to another request for help. Recently I'm suddenly having problems with the Blogger Navbar (the one with the search and next blog options at the top of the page). It keeps eating my blog title or half-hiding it.

Does anyone know how to fix this easily without losing the navigation bar?

****Update: This page tells how to fix it. I just added style="margin-top:55px;" to the body tag, that that worked great. 40 pixels might be enough for most templates.****

Now all the kids have just (finally!) fallen asleep, so I'm going to try to catch a quick nap too. They are feeling a bit better today, though everyone is still fussy, whiny, coughing and under the weather.

Baby E in particular was really miserable last night, resulting in maybe at most one or two hours of broken sleep for both of us before the other two got up for the day.

1 Comments

Candidiasis

Candida albicans is a yeast organism that's present virtually everywhere. It's a normal part of the human intestinal tract and general body environment.

In most cases, the balance of PH, digestive enzymes, beneficial bacteria, and other factors prevents Candida or any other single organism from taking over and causing health problems.

Scientists and doctors agree that an excess of Candida can, especially in cases of suppressed immunity or other predisposing factors, lead to illness. Candida is the cause of many illnesses like thrush, athlete's foot, "yeast infections" and more.

However, it is highly debatable whether Candida directly causes widespread vague illness in a large percentage of otherwise healthy people.

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

The questionnaires, symptom lists and most of the tests available that purport to identify a Candida problem are not particularly reliable or specific.

A test that shows excessive Candida in urine, for example, may point to a yeast infection of the bladder but does not necessarily indicate a systemic (whole-body) Candida infection. Too, the more common localized yeast infections may not be adequately treated by taking antifungals orally and making dietary changes.

Remember, everyone has Candida. The question is whether it's causing disease or not.

With the exception of clear fungal infections such as thrush and other yeast infections, in most cases the same pattern of symptoms is equally likely to occur as a result of one or more other factors besides Candida. Even in the case of true Candida-caused illness, the commonly-recommended treatments are not appropriate for everyone.

Even unrelated issues may seem to improve on the antifungal treatments, yeast-free diet, and the general healthier lifestyle being promoted. However, in many cases it is still important to consider the possibility that yeast may not actually be causing some or all of the symptoms. Or, even if yeast is causing symptoms, it could be a secondary issue that won't truly be solved until the underlying problems are treated.

I believe that these quizzes, tests, and the strong encouragement of self-diagnosis and treatment do sometimes result in symptoms of other disorders being blamed on Candida. In many cases this can be truly dangerous, such as when allergies, diabetes, thyroid dysfunction, malnutrition, cancer or celiac disease are the true cause of the symptoms.

There has been much research in the scientific community about all different aspects of Candida, systemic candidiasis, possible causes, variables and treatments. But nothing has been really conclusive so far when it comes to these kinds of non-specific generalized illness being caused directly by Candida.

It's not for the lack of trying; the research just doesn't show a clear causative connection. The research also does not seem to show consistent results in treating yeast with many of the dietary changes and other commonly-promoted treatments, although many have attempted to prove this.

We know that there is some correlation of Candida overgrowth with several other illnesses. For instance, higher numbers of Candida and a higher incidence of food allergies often coexist. But we don't really know whether this coexistence is causative or merely a correlation. Does Candida overgrowth cause food allergies, or do the allergies create an environment conducive to the Candida overgrowth, or both?

Even among those who adamantly believe in the Candida epidemic as the cause of many or most health problems among the human population, there is much disagreement as to the proper treatment.

A certain food will be listed on the "never eat" list of one "expert" while the same food is on the "beneficial" list of another. Foods like lemons or potatoes are often encouraged by one Candida proponent while forbidden by another. Some recommend taking garlic every day, while others caution against eating it daily for fear of creating allergies.

Some protocols recommend taking nystatin or another antifungal antibiotic for months or years at a time, while others warn against creating a tolerance for it if it's taken for more than 10 days or so at a time.

In some cases antifungal treatment or a special diet is clearly indicated. It has been helpful for many. Since it has very little risk, it's certainly worth consideration when nothing else is working. Especially if a person has recurrent, stubborn fungal infections, it makes sense to look at Candida as a possible cause.

But there is little proof that any one of these protocols alone really solves the problem in the long term for the majority of people with symptoms of "candida overgrowth".

Many people stay on the treatments for years or months at a time with little or no long-term improvement. This is not necessarily due to "cheating" on the diet, even though the diet is so restrictive and nearly impossible to follow that any failure of the treatment can almost always be blamed on such cheating. I know people personally (including family members) who were diagnosed with Candida overgrowth and stuck faithfully to the prescribed treatments with no real positive results.

Individual body systems are so unique, and a food or other variable that may be helpful for one person can be harmful for another.

Especially for a person whose diet is already strictly limited by food allergies, intolerances or other factors, cutting out all fruits and sugars along with most starches and grains could be counterproductive and may not always be necessary. The expense, frustration and side effects of a medication may not be worthwhile if the issue can be dealt with another way.

In many cases, dealing with the underlying issues and getting the body and digestive system healthier in general may allow any Candida overgrowth to resolve on its own.

Yes, Candida is an opportunistic organism that will grow wherever there's a weak spot. But when so many people seem to not be getting better and there are so many differing and disagreeing opinions about how to treat Candida, I think there may be something else going on.

It seems likely that, even if Candida is present, Candida may not be the actual cause of some or all of the symptoms for many people.

For instance, a lot of my "candida" symptoms went away when I cut coconut, dairy products and eggs out of my diet. I'm allergic to those foods. My daughter's symptoms are also drastically better when we avoid her allergens.

I know of a lot of corn-allergic people who had a collection of symptoms that fit the Candida profile (and in some cases they believed were caused by Candida), but went away when they finally removed corn and all its hidden derivatives (a monumental task in itself) from their diets. Undiagnosed food allergies can weaken the immune system just as something like Candida can.

Corn is a really hard one to pinpoint, because it is so pervasive in our food supply (even showing up unlabeled on fresh fruits, vegetables and meats) and because the symptoms can be so atypical for allergy. There is some speculation of a cellular-level autoimmune reaction similar to celiac disease that corn may cause in some people.

Another issue that I think complicates things for my child is that she is severely allergic to molds, and possibly to yeasts also. So, for that reason, she will probably never be able to freely eat lage quantities of foods that contain or easily feed yeasts and molds (unless she grows out of the allergy). I think any Candida in her body may affect her more drastically in smaller amounts because of that also.

We also found out that a lot of her supposed "candida symptoms" were being caused by severe reflux and aspiration (a swallowing problem which was causing fluids to go down the tube to her lungs instead of to her throat), and by anemia (iron deficinecy).

Finally, a recent stool test showed that she does not have the ability to process certain sugars.

Some people's bodies do not make the enzymes necessary to digest one or more sugars, whether it be galactose, glucose or fructose. Those people will get symptoms when they ingest that sugar. In some cases, this can easily be solved by supplementing the necessary enzyme.

There are people who are truly allergic to certain types of sugars. I am allergic to maple trees, and maple syrup gives me problems. Quite a few people are allergic to sugar cane because it is a grass closely related to several other grains (notably corn). People who are allergic to sugar cane can often eat beet sugar without problems. Other people are allergic to beets, and so might react to beet sugar while being fine with cane sugar.

All of these things can cause symptoms and a pattern of flare-ups that seem completely consistent with disease caused by Candida. They may even flare up when foods said to feed yeast are consumed, but really have a totally different cause and treatment. In a situation where Candida treatments are not very effective, it would be wise to look for other causes of the symptoms.

For us, dealing with these other causes and underlying issues has brought our health to the point where the difficulty, side effects and limitations of the candida treatment doesn't seem to have enough potential gain in health to be worth it. If we're feeling fine eating moderate amounts fruit, starchy vegetables and whole grains, why should we stop eating them? Especially when fruit and other more complex carbohydrates contain so many valuable nutrients and benefits to health.

Of course, anybody's health is going to improve by cutting out refined sugars and excessive carbohydrates, cultivating healthy intestinal flora, eating more vegetables, drinking more water and living a healthier lifestyle--whether they have an illness caused by Candida or not.

In my situation and and Baby E's, my instincts are telling me to focus on the underlying issues and on general good health rather than hyperfocusing on the Candida itself.

I do want to make clear that I'm not trying to dismiss Candida as an element of illness. For many people it is a very real and serious part of their health problems.

But Candida is an opportunistic organism that has to have a vulnerable environment in order to take over. Even if Candida is actually causing problems, just treating the Candida may not adequately resolve the issue.

If a person doesn't deal with whatever root issues left them vulnerable to Candida in the first place, most likely no amount of nystatin is going to make them truly well in the long term. As soon as they go off the treatments it is likely to just grow again, since it is a normal organism always present in the human system.

13 Comments

Carnivals

My post on Allergy Diagnosis and Treatment is included in the brand-new Health Carnival.

This new carnival seems nicely organized and looks quite readable, although there's no indication that whoever put it together actually read any of the posts included. Still, I'm looking forward to getting a chance to check out some of the posts.

I was pretty excited about my post and my series of articles that it linked to. But apparently it didn't seem as valuable a contribution to the medical blogging community as I had hoped.

##########

It was turned down for inclusion in Grand Rounds (even with a food theme for the issue and a specific solicitation for posts about allergies--of which not a single one was included), and also turned down for inclusion in Carnival of the Vanities (or maybe just overlooked, since supposedly every post submitted was included this time). Oh, well . . . you might find some other posts you enjoy in these collections.

This was the first time I had ever submitted a post in multiple places, but it contained information that I thought was valuable and had really hoped to get out a little more widely.

It's always a strange feeling when you worked very hard and thought something you wrote turned out well, but nobody else seems to agree. Oh, well again. No harm to anything but the ego.

Hmmm, I just realized that this post sounds a bit grumpy. Plus Blogger keeps making my post window jump around, which is driving me crazy. Maybe I shouldn't be posting at almost 2:30 a.m. when I'm exhausted and still up dealing with fussy, clingy, miserably sick kids.

2 Comments

Wednesday, January 10, 2007

The Sick House

We've had some miserable illness in the household for almost 2 weeks now. My guess is that it's influenza or some similar virus.

Current status:

###########

DH finally seems to be over the bug.

AJ seemed to be getting over it, then relapsed. Still, I think she's on the tail end of it.

M&M is in the throes of it.

Yesterday she was saying, "I'm not sick. I'm just really, really tired. And my head hurts. And my legs hurt. And my knees hurt, and my toes hurt, and the light is too bright. I'm just a little bit hot, and I can't walk very well. I just want to take a nap. But I'm NOT sick! I just keep coughing because my throat is dirty, that's all. Not because I'm sick. I'm not sick at all."

Today even she has to admit she's sick.

Baby E started acting like she wasn't feeling well last night. Now she has a fever and cough and is obviously feeling awful.

I spent quite a bit of time this morning with all three girls piled in my lap in the little rocking chair, rocking and singing to them. Now we're hopefully all going to take naps. I think I'm going to have to end up holding Baby E for her to sleep at all, she's so miserable.

I never did get the full-fledged illness when I thought I was coming down with it last week. I slept for about 24 hours straight this past weekend and felt very fatigued and achy, but I'm not sure if that was illness or just the natural result of the way I'd been pushing myself for the few weeks before that.

I do find it interesting that Baby E and I have been the last and/or mildest to get sick. Maybe all that uber-healthy food and complete lack of refined sugars has strengthened our immune systems.

5 Comments

Delurking, and Reasons for Blogging

January 8-12 is Delurking Week. I believe it was originally Paper Napkin's idea. She posted a few icons for people to use, and I thought these two were funny.

Delurk: In cyberspace no one can hear you read

Cranky guy saying, Would it kill ya to comment?

I write my blog for three main reasons:

##########

First, I write for myself and my family, to chronicle our life and my thoughts about it. That's already been immensely helpful, both as an outlet and processing point for me.

It's also helpful as a reference. It's nice to be able to go back and check my records of what day we had that doctor's appointment, or when it was that Baby E screamed all day and what was unusual about the day.

That was immensely helpful in making my charts and records for the doctors. I've been able to use several of my blog posts to help Baby E's doctors better understand her condition. When I started bringing that kind of information to appointments was when we began to make progress.

My writing brought results when just telling the doctors verbally wasn't working.

Secondly, I write to help other people. My posts about the controversy and potential dangers surrounding Airborne Formula and about how to sidecar a crib receive more hits and links than all the rest of my posts put together. People seem to find them helpful, and that's exciting to me. I also get a lot of hits from people searching for help with their child's allergies, or a baby that screams all the time.

If anything I write here can provide any measure of help or comfort, that alone makes it valuable.

That's a large part of why I post so much about the research I do about allergies. I feel it's important to chronicle the difficulties of getting information about allergens and appropriate treatment from everyone: the ignorance and lack of cooperation ranging from pharmacists, doctors and other medical professionals to food companies and drug manufacturers is appalling.

I tend to think that somehow, if the general public realizes how horrendously difficult it is to find out what's actually in our food and medicines, or how hard it is to get doctors to take allergies seriously, look past statistics and see the actual patient, people might be more willing to help change the system.

I hope that my blog will help to build awareness and indirectly become a catalyst for change.

Maybe it will be small: Maybe some parent with a food-allergic child will learn how to push harder and get more answers when they call food companies. Maybe some doctor or nurse will learn that there is value in listening a little more closely to the patient's concerns. Maybe some grownup will be more careful about the food or toys they offer unthinkingly to someone else's child. Even the smallest result helps to make my efforts worthwhile.

Finally, I do my journaling online, in a blogging format, because I enjoy the interactions with commenters and other bloggers.

Since I have cable internet, it's online all the time. Blogger notifies me via e-mail of new comments on the blog. My computer automatically checks e-mail for me every 5 minutes.

So, every time I walk by the computer I check to see if anyone has commented. I may not always be able to respond to every comment, though I try, but you can be assured that every comment is read and appreciated.

I love having people comment on my blog. It makes me feel like there is actually someone out there reading; I'm not just talking to myself.

More than anything else, this post is a thank-you to my readers and commenters. Sometimes your comments make me laugh. Sometimes they bring tears to my eyes. Sometimes they help me get through the day.

Strangely enough, the support, advice and just the sheer presence of a bunch of mostly-strangers is a special and enriching part of my life.

It still flabbergasts me that anyone would find my life interesting enough to read my blog somewhat regularly, but somehow some of you do. Thank you. And thank you for your comments, even if it's just leaving a blogstone (o). Your comments make my day, if only for the fact that they let me know you were here.

A comment means that a reader became engaged enough with whatever they read to want to leave some kind of mark that they were here. That's always exciting.

Anyway, I totally understand that some people aren't comfortable commenting. But if you'd like to comment, please feel free.

Don't ever feel like your comment won't be noticed, or that I won't care.

I read every single one.

18 Comments

Tuesday, January 09, 2007

Norming

Baby E has been doing so wonderfully lately. The combination of reflux medicine, thickening her beverages to help with the aspiration, and being more careful about exposure to her allergens seems to do the trick.

It's been at least a month or two since she's had a screaming spell (other than the normal toddler tantrums, which of course happen frequently). She's becoming less clingy and needy as the days go by, although with her increased energy and climbing ability she is hard to keep up with. She is happy, energetic, social, and has the appetite of a bear.

She's not having diarrhea or huge quantities of undigested food in her stools on a regular basis. She sleeps through the night and wakes up cheerful, and almost always takes a fairly decent afternoon nap. She cries for maybe 5 minutes max when we put her down for naps and bed.

When she's not actually having an allergic reaction to something, she seems perfectly healthy and happy.

##########

I haven't given her the nystatin since yesterday at lunch time. Already most of the redness is gone from her cheeks.

I spoke with the naturopath today and she said it was fine to just take her off the nystatin. She was amazed at the detective work I had done to find out what was in the medication and how it was produced, and told me I should get a job with the FBI. :)

Since Baby E is doing so well, it may be that resolving the underlying issues and watching our diet could allow her body to deal with any opportunistic yeast overgrowth on its own. If she's worse after a week or so off the nystatin, then we'll probably look into a different antifungal.

Meanwhile, she said, "Just keep doing what you're doing. It's obviously working!"

The GI specialist nurse practitioner called today. She said that the upper GI study showed that Baby E was refluxing severely, all the way up into the back of her mouth. There were no other abnormalities found, so that's confirmation that we're taking the right approach with the reflux medication.

We will wait to hear back on the test results regarding the sugars in her stools, and schedule meetings in the next few weeks with the speech therapist and a dietician.

The NP also said that the combination of symptoms Baby E had after the upper GI study was fairly normal for a child with severe reflux after that type of study with that medication. So most likely it was a bad case of side effects and maybe an exacerbation of the reflux.

She had an adverse reaction, but not an allergic reaction. And it was not something really dangerous, just uncomfortable.

I had suspected that might be the case. Probably if she ever has to have this medication again, I'll just let them know she is very sensitive to it and ask if they can try to minimize as much as possible the quantity they give her.

From reading studies and other reports about it, it seems that the younger the child and the higher the quantity consumed, the more likelihood of having diarrhea from it. Some 30% or more of young children get diarrhea from ingesting this particular contrast medium. It also seems quite likely to me that the choking and sore throat/mouth could have been from all the acidic fluid in her stomach coming up into her throat.

All of this is so encouraging. I feel that we're finally getting to the place where life can begin to normalize.

Hooray!

10 Comments

Produc-its and Solutions

Yesterday my friend Morning came over for lunch. We had chicken vegetable soup, which everyone enjoyed. I can't believe how much all three kids are eating lately. The five of us ate every last bit of the large pot of soup I made.

While I had the food processor out I decided to go ahead and do the task I had planned for the day. I washed, peeled and chopped vegetables while we visited. All the carrots and celery that were left in the bags, a bunch of bok choy, a cassava (yuca) root, and a bag of onions are now chopped and sitting in the refrigerator waiting to be dumped into a recipe. Since I had already cubed a couple of cauliflower heads the night before, that should give me a good head-start on meal preparation for the week.

Morning had a suggestion to make.

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

I've been wanting to hire someone to come and clean my house at least once, after we get the clutter under control enough that someone wouldn't have to be moving piles of things to clean around them. Morning used to have a job cleaning houses, and has been thinking about picking it up again. So she wanted to know if I would consider hiring her.

She had already thought through some of the details, including how much she would charge, which was immensely helpful. The price she suggested was something quite reasonable that we could afford to pay for a few hours per week or month, but seemed fair to her also.

Since I know her well and she's been in my house at its worst, I don't feel that I have to get the whole house tidy before she can clean.

I know she's not going to think worse of me because I haven't kept up better on the housework, or make comments like "I found the broom . . . did you even know that you owned one?" or "You know, if you would just wipe out your bathtub every time you use it, then you wouldn't have a ring around the tub."

I really like this solution.

I don't mind letting someone help me with the dishes after I feed them a meal, or trading time helping each other chop vegetables or care for children, but the situations are very far and few between where I can bring myself to let someone else do something like clean my bathroom. It's difficult--I know people care and want to help, but I don't want them (or me) to feel like I'm using them.

Yesterday after we visited for a while and had lunch, Morning vaccuumed and cleaned bathrooms while I put vegetables away, did the dishes, took care of the kids and made telephone calls. My bathrooms are so shiny now!

In addition to the conversations with the compounding pharmacist yesterday, I had another real winner of a conversation. This one was with the company that makes the supposedly hypoallergenic probiotics I found.

They did tell me that the FOS in the product is from chicory root, but I could not get them to tell me what the magnesium stearate was derived from. The most common sources are beef and palm kernel oil, or sometimes cottonseed oil. Obviously the palm kernel derived product could be problematic for me.

The man I finally spoke with (after being transferred several times) had a heavy accent and didn't seem to easily understand English, which of course complicated matters.

His answers to my questions took a format I've run into many times: Repeatedly reading to me the label on the bottle.

"We have severe allergies to corn, soy and about 10 other foods. I was wondering if you could tell me what the magnesium sterate in this product is made from."

"Uh, eet say on de label, 'Dis pro-dukit is fr-ree of cor-un, soeey and day-ree'."

"I know, but we have a number of other allergies, and also it's legal to put 'free of corn' on the label when there are actually corn-derived ingredients that are supposed to contain no protein in the product. Can you tell me what the magnesium stearate is derived from, please?"

"Dis pro-dukit is fr-ree of cor-un, soeey and day-ree. If it say it free of dose things, it not have it in dere."

"Yes, thank you, but we're not allergic to dairy. We are allergic to apples, bananas, coconut, and a number of other foods. Magnesium stearate can be made from several of these things. Do you know what it's made from?"

"No, de manufacturer do not tell us dat. We do not know what maybe in it. We only know dis pro-dukit is fr-ree of cor-un, soeey and day-ree. Dey tell us what iss not in it."

"I was just reading that magnesium stearate, if it's not made from beef, is usually made from palm kernel oil. I am extremely allergic to coconut. Palm kernel oil would cause me problems as well. Do you know if it might be made from coconut or palm kernel oil? Or is that something you can find out?"

"Dis pro-dukit is fr-ree of cor-un, soeey and day-ree. No coconut, neither. It do not say it have coconut in it."

We went around in circles for ages. At some point I gave up. "Well, thanks anyway."

I looked at the package again. It didn't make any claims of being vegetarian or not containing animal-derived products, so most likely the magnesium stearate was derived from beef. I decided to risk it.

I didn't have a reaction.

3 Comments

Pharmacist Foibles

A few minutes after I got off the phone with the compounding pharmacist, I called him back again.

"Hi," I said. "I talked to you a few minutes ago about the Nystatin, and we had decided it would be safest to just have you send me the plain Nystatin powder so I could mix it up myself. After I hung up it occurred to me that it would probably be a good idea to check the ingredients on the powder itself."

"It's just nystatin."

"I know, but often powders have something like silica or dextrose in them to stabilize or standardize them."

"We're a compounding pharmacy. All of our ingredients are 100% pure. There's nothing in there but nystatin. --E isn't allergic to nystatin, is she?"

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

"I don't think so, but I suppose anything is possible. It would be really unusual for someone to be allergic to nystatin, wouldn't it? It's supposed to be inert in the human digestive system. But I guess it's possible she could be allergic to it.

Still, I think it's more likely she's reacting to the glycerine or something like that. I think I'll talk to her doctor about taking her off the Nystatin completely for a week or so. Then we could try putting her on the plain powder to see if she reacts to that."

"Okay. Whatever you want to do."

"But I really need to know if there's anything she might react to in the powder."

"There is nothing but nystatin in that powder."

"Please, could you just check the ingredients on the package for me?"

"We would never use anything but pure ingredients in our pharmacy! Everything we use is 100% pure! I promise you there is nothing in that powder but nystatin."

"One of your other pharmacists kept telling me earlier this week that your stevia powder was 100% pure stevia, and then when she actually looked at the box it said 90% stevia. And you all kept telling me there was nothing but water and a little bit of pure stevia in the nystatin suspension, when there were things like glycerine and xanthan gum in it. I would really feel a lot better if you'd just check the box for me. Please?"

"No! I don't need to look at the box. I know there is nothing in there but nystatin."

"Can't you just double-check?"

"No, I will not."

"Well, then please hold off on filling the prescription. I'm going to talk to my daughter's doctor before we do anything else."

"I have a note here to call you and the doctor before I fill the prescription."

" . . . By the way, what is nystatin exactly, anyway? I mean, what's it derived from? Do you happen to know?"

"It's a medicine."


"I know it's a medicine, but what kind of element is it, or what is it made of? Is it a mineral, like barium?"

"No, it's not a mineral. It's just a medicine."

"I know, but do you know what it's made from? Is it plant-derived, or a mineral, or what?"

"It's not any of that! It's a MEDICINE!"

"Do you mean it's chemically-derived?"

"Yeah, I guess you could say that. It's a medicine."

I couldn't make this stuff up if I tried. In fact, if I was making it up I'd write much better dialogue than this.

You'd think a highly-trained professional like the head pharmacist in a compounding pharmacy would be able to think of a more imaginative response. Most people aren't quite THAT limited.

It must be awful for that man to have such a crippling fear of ever under any circumstances allowing the words "I don't know" to pass his lips.

By the way, nystatin is an antifungal organic compound. It is derived from the bacteria Streptomyces noursei, which was originally discovered in dirt by two women who were trying to find an antifungal antibiotic.

S. noursei is often cultured in mediums made up of various ingredients, including soy broth, yeast extract, and glucose (glucose is generally corn-derived).

This paper says, "For nystatin production, S. noursei strains were grown for 120 h in 50 ml SAO-23 medium (g per l: glucose, 45; NH4NO3, 2·5; corn meal, 3; MgSO4 . 7H2O, 0·4; KH2PO4, 0·2; CaCO3, 5) in shake flasks at 28 °C (220 r.p.m.). Cells were then pelleted and extracted with DMSO, and extracts analysed by HPLC."

It seems the cornmeal culture is a standard method for producing nystatin.

13 Comments