Update on Sandhya (long)

mad scientist

Some of you have been following my ongoing issues with my DD. She is now 6 months old and 10 lbs. In the last couple of weeks we started to see clues that her slow gain might be the result of food allergies (she reacted to regular formula and then also to Nutramigen which is hydrolyzed cow protein based). I cut out dairy a couple of weeks ago and had a soy latte one day. Again, she wasn't herself.

So we had an allergist appointment yesterday. The skin tests confirmed my suspicions. She is allergic to dairy (milk protein and casein), soy and eggs (white and yolk). There is some risk of false positives in allergy testing on infants (about 10%) but it is highly unlikely that they are all false, especially since I've seen her react with my own eyes.

I am now on a strict elimination diet removing all dairy and dairy ingredients, egg and soy/soy ingredients. The soy one is actually going to be the hardest because soy (soy oil and soy lecithin) is in all prepared foods.

Anyways, I'm pretty devastated by all of this. First of all, I'm convinced that I am going to die of starvation or worse yet I won't have the self-discipline to avoid all the foods that I need to. I am even more terrified of the thought of Sandhya starting solids and having to keep her away from all of the foods that her brother eats. Karan tried to feed her toast yesterday when I wasn't paying attention and she looked ready to go to town with it.

I almost cried when the pharmacist handed me the epi pens yesterday.

So that's our update for now. I'm going to post on the main board as well to get some general ideas about food allergies and elimination diets since its not restricted to kids. Hopefully she will outgrow them quickly!

DarkAngel

I am so sorry you both are going through this. I have a girlfriend who is going through the exact same thing. Her little girl just turned one and weighs about 14 lbs. She won't be allergy tested until next month because her doctors wouldn't test her until she was one. Her mom has eliminated the same things as you because they assumed she had those allergies. I know she eats a lot of grilled chicken and veggies. I will call her and ask if she has any tips to share to make this easier for you. Hugs to you both.

internetchick

(((hugs)))

marielle448

Oh I'm so sorry to hear that. Glad that you're getting to the root of the problem but knowing that it's super hard on an elimination diet. I know what you mean about the epi and suddenly facing a world that is not prepared to deal with allergic kids. Our lone allergy is nuts & peanuts (and it's only one kid) but we've found that phasing it out of the house is much easier on parental sanity. I carry an epi and keep one at home constantly and we ask tons of questions before anyone gets a bite.

Hang in there. It's super tough and you're a great mom for pursuing it to find out the cause.

CurlyCanadian

So sorry to hear that MS

I have a friend who is allergic to gluten and had a horrible time at first becasue its in everything. Supposedly more companies are catering to this allergy though, so hopefully it won't be too hard!

I can't get into any of these sites from work, but seems to be lots of info....

http://www.google.ca/search?hl=en&q=soy+free+diet&btnG=Search&meta=

webjockey

I'm sorry. Major hugs to both of you.

If I come across any recipes and sources I'll be sure to post them.

medussa

I cannot even imagine. My heart is breaking for you. But you can do this. You will do whatever it takes to keep your daughter healthy and thriving.

I am so glad you now have answers.

{{{Hugs}}}

wavezncurlz

Hey Madscientist
I've been thinking about you since our daughters are the same age (and their siblings too). Good for you for investigating the situation. It's difficult now but I know you will make it work!

Kaia

I'm so sorry you're going through this! At least now you know what was causing the problems you guys have been having. (((HUGS)))

RedCatWaves

I have an online friend, who I was board-mates with when we were having our daughters at the same time, in January 1997. We've been together as a group all this time. Her daughter, Alex, developed severe food allergies as an infant, moreso than your daughter. Alex was/is allergic to dairy, wheat, corn, soy, and nuts, with life threatening reactions to them. She went into anaphalaxis from milk one time as an infant. Alex is 10 now, and it has been very difficult feeding her. My friend decided to homeschool her because she didn't trust school systems to adequately care for her. Unfortunately, fear seems to have overtaken both of them, and Alex is severely underweight, small, and has been diagnosed with anorexia nervosa, at only 10 years old. There are things she can eat (meats, vegetables and fruits), but her fear of eating is so pervasive now that she can't hardly eat anything. I think a lot of the fear has been transferred to her by her mother. Understandably, her mother was/is very fearful of what could happen if Alex eats the wrong thing, but I feel she should have kept some of that fear to herself, rather than scaring the crap out of the kid about every.little.piece.of.food they came in contact with. Alex attends an eating disorder clinic weekly now, but intervention probably should have been started years ago. I fear for her.

I'm not trying to scare you, just share with you that it's a fine edge to walk as the parent of a child with food allergies. Food is the bounty and fuel of life, yet they can't have some of it. It's hard to foster a healthy attitude about food even when allergies aren't present, it's got to be 100 fold more difficult when allergies are present.

I hope Sandhya's allergies resolve with time.

cosmicfly

I'm sorry you guys are going through this. My younger brother was very sick as a baby (this was in the 70s), didn't gain weight, was dehydrated, etc. He cried all the time and rarely slept. He was hospitalized several times. It turned out to be severe food allergies, to dairy, wheat, soy (I'm at my mother's now, she says he was allergic to everything). Anyway, he was gradually able to tolerate more foods and had grown out of most of the allergies by the time he was 8 or 9. He also had asthma as a young child which improved then disappeared on the same schedule.

Good for you for getting to the root of the problem. Sandhya's lucky to have such a dedicated mama.

webjockey

you may want to connect with autism groups online or centers that specialize in treating autistic children

shirleytemple13

I'm sorry it's been so difficult for you. I don't eat gluten and it can be a huge pain. But you get used to and when/if you see your daughter doing so much better I guarantee it will make it much easier for you. Hope you see a difference soon.

iris427

I'm sorry you are dealing with this. ((hugs)) and best wishes to you and Sandhya!

Brown_Eyed_Girl

I'm so glad you finally found out what the problem is, but also sorry that she has allergies. Your daughter is so blessed to have such a great mom!

mad scientist

Thanks everyone. I'm actually feeling a bit more hopeful now. Knowledge is power, I guess. Its actually a good thing that we are Indian - a normal vegetarian Indian diet (like I grew up with ) is non-soy and non-egg and other than yogurt on the side, non-dairy. So I guess I'll be going back to my roots for daily eating, with some grilled meat thrown in the mix. I also spent about an hour digging around in the pantry. I'm a pretty aggressive label reader anyways and always choose organic and natural where I can so I was pleased to find very little in the way of soy in the prepared foods I buy (sauces, salad dressing, chips etc...).

I don't think it will be possible to make my house egg and dairy free without starving Karan in the process. He lives on eggs and yogurt and bread. Its going to be hard enough getting enough protein and fat into Sandhya (she's already behind to begin with).

I guess only time will tell how serious this all is and whether we'll have to re-think daycare, preschool etc...

RCW - reading your post resonated with me. I have spent the last 2 days totally paralyzed when thinking about food. I have to get over this and consider the time that Sandhya is still exclusively BFing as the time I have to get our house organized and ready for when she is old enough to eat so that she can transition to solids as smoothly as possible. I need to educate the rest of my family.... including Karan and just make it work. That's all there is to it.

BTW - she's still going to be tested for wheat and nuts next week....

medussa

webjockey wrote: »

you may want to connect with autism groups online or centers that specialize in treating autistic children

I'm not following. Are you referring to the GCF diet?

marielle448

One of the positives that I've heard from our pediatrician and a friend with a similar experience is that depending on the severity of the allergy if you keep it away from her and test in a couple of years it may wane or disappear. A friend's little boy was tested at 5 after having a VERY severe dairy allergy and he's no longer allergic. Sometimes even nut allergies although they can be a bit less likely to go away.

We're holding hope anyway and will test Ryan in a year then at a later interval. if it comes back he's not allergic we won't go hog wild but it will help us breathe a sigh of relief.

here's some links from a forum I belong to (they have an allergy subforum):

hidden dairy: http://www.users.qwest.net/~fsdebra1/refluxdairy.html

http://www.naet.com/

http://www.enjoylifefoods.com/ (sells baked goods free of the 8 major allergens)

corn:

http://corn-freefoods.blogspot.com/

http://www.cornallergens.com/list/corn-allergen-list.php

kind of alternative but sublingual drops that are supposed to treat allergies

http://allergychoices.com/se3bin/cliente.cgi?schoolname=school1000162

webjockey

medussa wrote: »

webjockey wrote: »

you may want to connect with autism groups online or centers that specialize in treating autistic children

I'm not following. Are you referring to the GCF diet?

Yes. but some other places also work with nutritionists that focus on no casin, no gluten, no whatever diets. at least the place here in austin has an extensive nutrition program and resources linked with their autism research.

mad scientist

webjockey wrote: »

medussa wrote: »

webjockey wrote: »

you may want to connect with autism groups online or centers that specialize in treating autistic children

I'm not following. Are you referring to the GCF diet?

Yes. but some other places also work with nutritionists that focus on no casin, no gluten, no whatever diets. at least the place here in austin has an extensive nutrition program and resources linked with their autism research.

That's interesting. We will be seeing a nutritionist at Children's Hospital. I'm a little leery because my experience with nutritionists so far (my Mom saw one when she was diagnosed with type II diabetes) is that they don't really know much about ethnic diets at all. But we might get lucky here in Vancouver since there is such a diverse population.

subbrock

well im glad you finally found out what is going on with little miss sandhya! best wishes for you and your family.