Thursday, December 13, 2007

Thanks Al!


First off I've been so blessed by your kind words, prayers, offers to watch my kids--thank you all SO MUCH! Kaitlyn's responding to the antibiotics (though of course not thrilled to be woken up around midnight to take them--this every-eight-hours business is brutal!), and the best part is that FINALLY, after MONTHS of battling an insanely itchy, red, awful diaper rash, it is responding to the steroid cream the doctor prescribed! It still itches her, however, but it looks better than it's looked in several months. I can't believe it, like I can actually see SKIN there now and not just red.


I've been doing a TON of research online the last couple of days, looking at immune disorders, obscure syndromes, etc. and thinking about Kaitlyn's symptoms in hopes of compiling some questions for when we see the specialists next week. Every syndrome I've found just doesn't seem to fit Kaitlyn very well. Recurring staph infections are a common symptom for a lot of them, but they all pretty much include lots of symptoms that quite frankly she DOESN'T have...strange facial features, repeat pneumonia, lung problems, heart problems, low T-cell count. In fact, for pretty much all of them, the most common indicators are things she DOESN'T have.


What I DID find, however, was something called atopic dermatitis (most common type of eczema)...for which she literally has EVERY symptom. Including recurring bacterial infections that are happening right where the aggravated, itchy skin is. Our pediatrician told us that her diaper rash that she's had for months is not itself bacterial, that a bacterial infection will hurt but not itch. He also said that he believes the bacteria is reinfecting that area because it's always so raw and ripped up. He tried treating it with anti-fungal creams a few times, but it didn't respond to them AT ALL, so now he's prescribed a steroid cream and it's totally responding. (Turns out atopic dermatitis is often treated with steroids.) Kaitlyn also has scaly, rough patches on her arms and legs, and currently her cheeks, and she's had cradle cap for months also. Guess what, those are all symptoms of atopic dermatitis. I have a history of allergies (pollen, pet dander, eczema), and we have some allergies/asthma in our families--and guess what, those are all indicators of atopic dermatitis. My pediatrician also is thinking about a possible zinc deficiency--which, indeed, can bring on dermatitis. Kaitlyn has EXTREMELY sensitive skin, always has, very susceptible to breaking out in a rash from detergent, heat, certain fabrics...also an indicator.


SO, I am about 99.99% convinced that even if there is some random immune problem going on, she has nasty eczema. I'm not sure why she's lost weight, although zinc deficiency can cause this (you can have a deficiency in spite of a proper diet--it can happen during periods of rapid growth, therefore it can happen to infants because they grow so quickly.) It can also cause your immune system to be suppressed. The weight loss does coincide with when she started crawling/eating solids and I wonder if maybe I wasn't feeding her enough solids or something weird like that? Although she's fallen off her growth curve, she is currently right about where Anna was on the growth curve. At any rate the weight loss makes me feel very concerned (the pediatrician too.) Though goodness knows that she eats/nurses a lot and has energy to spare!


Anyway those are my findings. I kind of feel like a dork doing all this "investigating", but I'm thoroughly convinced that YOU are your child's best advocate and just because you didn't go to medical school doesn't mean you can't be informed and play a large role in your child's healthcare.


Oh, and I'm so grateful that Al Gore came up with the internet! What would we do without this amazing contribution of his??? (Hee, hee.....)

16 comments:

Carrie said...

My niece has similar issue to what you are describing. She has always had the worst eczema and very over-active yeast colonized throughout her body which contributes to the problem. It’s an immune system issue. She ends up with a very itchy, welted red rash all over the backs of her thighs (and in her diaper when she was smaller) and a red itchy rash on her hands, arms, and around her eyes. She also has a hard time gaining weight (didn’t grow at all for 18 months when she was 1) and at age 5.5 wears 3T clothes. The only way my sister has found to control this is with a VERY restrictive diet that eliminates all sugar, simple carbs, and dairy.

I’m crossing my fingers that your little girl’s issues are nothing serious and easily treated. I remember how worried we all were until we figured out my niece's health issues.

Jacquelyn said...

Al Gore created the interweb? who knew? wonder ifn al that resurch is cauzn globul warmin.

Seriously, I'm glad you had the confidence to educate yourself and come up with solutions. No doctor on earth can know your child as well as you do and love your child as well as you do. Great investigating Dr. Heldt!

Michelle said...

I absolutely agree that you are your child's own advocate, good for you! I know how exhausting chronic problems like this are and will certainly be praying for you. What a wonderful mommy you are for all your kids and especially for little Kaitlyn as she goes through all of this. Have they done allergy testing on her?? With your history and the excema I would consider allergy testing. Matthew's problem is that he has an overreactive immune system so we're getting sick all the time and thus dealing with more asthma, etc. Anyway, keep us updated!

Joy said...

do you ever watch the tv show "house?" i bet dr. house could have diagnosed kaitlyn in less than 1 hour. he's good

Joy said...

okay, that last comment was supposed to follow my first comment that didn't get published. i said something like this--that it takes courage to be your child's advocate and i admire you for doing that. praise God she's responding to the steroids.

Kate said...

oh, i feel out of the loop, i haven't checked blogs for a while. I'm so sorry about kaitlyn...glad she's repsonding but am so sorry she's uncomfortable and you've been stressed. i would never had guess that things were so bad when i always see your smiling face at church and other functions. god is good, like you said on my blog, and he will carry you all through this.
love you adn will be praying.

Brianna Heldt said...

joy no i've not seen "house", though someone once told kevin he looks like somebody on there!

Carrie Haughey said...

so glad she is getting a little bit better!! and yay for you for doing some investigating on your own!!

Dr. House would totally find out what's wrong with her, you should call him...

Brenda Williams said...

Way to go Brianna, getting all the info you can! I agree, without the internet I would be so lost!
Glad that she's improving.
We'll keep praying.

Lara said...

Oh Geez! Eczema?! As you know Caedra has eczema too, and just today her doctor mentioned that we should probably start paying attention to a possible food allergy. No fun! We also have a steroid cream for bad break outs that works really well, unfortunately you just can't use it all the time, so that leaves us to investigate the cause. I think we have a long road ahead of us too. Just when I think I have it all figured out she breaks out again.
If you are interested, California Baby brand is the best baby soap I've found so far, they have an extra sensitive version especially formulated for kids with allergies and eczema. They sell it at Target. I haven't found a lotion I really like yet though. Let me know if you find something you like for Kaitlyn. Poor girl.

Brianna Heldt said...

lara thanks for the info! yeah there is most likely more going on than just plain old eczema however--her huge weight loss for one, and today i found some pictures online (ew) of feet that look EXACTLY how kaitlyn's did way back when, and guess what it's not bacterial, it's a type of dermatitis brought on by zinc deficiency! at any rate i'm so anxious to see the dermatologist.

Kristen Borland said...

1. katie's stinkin' cute.
2. you're NOT a dork! keep up the research
3. i'm so glad you might have it figured out finally and that the steroids are helping.
4. yes, we HAVE to be our children's advocates!! i've learned that with Amanda... before she's even in our home.

Lisa Leonard said...

That sounds very hopeful--good for your for researching. Thanks for keeping us updated. We prayed for you guys last night.

sara said...

I didn't want to jump in where your doctors were, but I did want to leave a comment last time, that even if it was an immune deficiency, there are plenty of minor ones that don't do much besides one kind of infection. Lots of kids get repeat infections and get worried about and it's nothing in the end...and with a lot of things, all of the sudden, one doctor will look and see a pattern that no one saw before.

Keeping fingers crossed!

Amy said...

First of all, she just is so beautiful. My son just looked over my shoulder and told me she looks like our youngest did at that age.
I have one with rather horrible exzcema. We also have the asthma/allergy/croup connection too. My Ella is sensitive to everything and has diaper rashes often. She gets itchy and crusty at the slightest wind blow. Our Dr. prescribed a cream (not Elidel, but I can't remember the name of it at this point) that helped greatly on her face.
Personally, I've had an itchy spot on my leg this year that doesn't want to go away. It's about a quarter size, and seems rashy more than exzcema-y. But that's what it is. I've had it for 3-4 months and just when I think it's finally gone, it's back, and itchy. So exzcema can appear differently too.
(((hugs)))

Samantha said...

Rachel started getting eczema at around 2-3 months old. Bennett also had some unexplained skin rashes and intestinal problems. I am allergic to dairy, so we already weren't eating that, so I eliminated gluten, knowing that was another common allergen. Her rash was gone within a few days. We later had allergy testing done and we are all allergic to dairy and gluten and on top of it I am allergic to eggs. It is crazy what a food allergy can to do a body!

I pray that the solution is something manageable like that for you guys. It is hard, but totally doable. Keep searching for the answer (I am the same way with my kids. I like to go in knowing more than the doctor!)

 

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