Jakob Update - some head way

boyohboyohboy wrote: ok so today the ped calls and says that some of jakes tests are returning, and it appears he might have an allergy to eggs, milk protein, and wheat....
so that basically covers everything i eat, as well as jake. he feels that if this is the culperate, then he may very well have been crying all this time, and not sleeping from the pain in his stomach from eating foods he is allergic too.

so right now i am stopping all the above foods in both our diets. I am not sure how long it takes to get it out of our system, and I am bfing 24/7 to help him gain, and stay hydrated. I am also looking into some soy products and rice milk..

does anyone else out there have any advice on food allergies, how do you feed them? everything has gluten in it, and there are so many words for milk and wheat that you would never guess thats what it means is in there, are we destined to only special health food stores?

so we have an appt for the scratch testing on thursday...to be certain thats what we are dealing with....

gr33n3y3z replied: Katie is highly alergic to dairy
I will send you info

amynicole21 replied: Oh man! I'm glad you got some answers, but those are hard to deal with. I hope that this is something he grows out of in time. IN the meantime, many hugs to you.

coasterqueen replied: eat all whole foods, no boxed or prepared foods. alot of soy products. This is embarassing, but when I was going dairy protein free I ate a lot of mcd's for lunch because their burgers (I'm not sure they are now) and french fries were ok to eat. It's VERY hard to get it all out of your diet, but well worth it. It takes, I think 2 weeks to get out of your diet and up to 6/8 weeks to see results once it's all out of your diet.



I didn't realize he was crying so much. How are his stools? I must have missed information in your past posts or I would have suggested this.

May things start to get better for the both of you very soon.

DansMom replied: Oh, I feel for you and for Jakob. Daniel is allergic to egg and milk protein too, but not wheat. That is a lot to eliminate---but if this is the problem, you will find things getting better very quickly if you really eliminate these things. It means a lot of home cooking, snacks that you bring everywhere because he can't eat what's being served, etc. After about a year, you'll be so used to it that it won't feel weird at all.

Just some initial thoughts: Rice and potatoes make great starch carbohydrate staples for wheat allergic kids. Mashed potatoes with olive oil and chicken broth might be a good food for you to try---Daniel practically lived on this while we figured out what he could and couldn't eat. Olive oil is a good replacement for butter when it comes to flavoring bland foods like rice, and it's very healthy. Milk-free margarines are available (Earth Balance, Soy Garden, Spectrum) if you want a spread. Are you close to health food stores at all? You can get more dairy-free and wheat-free snack foods in those stores than in grocery stores.

Soy milk and Rice Milk are great. Just a caution---avoid Rice Dream brand rice milk. They have some cross-contamination with their dairy products, and aren't reliably pure (Daniel had a reaction to it). Silk brand and Edensoy have been great for us. Keep in mind that soy has more protein, which you do want, if he can tolerate it.

Oatmeal! A wonder food for those with wheat allergy.

For a while I posted at http://messageboards.ivillage.com/iv-ppallergies until I figured things out and felt confident about what I was doing. There are some good recipe books out there, and lots on the web if you google a bit.

The good news is that 80% of kids outgrow allergies to milk and egg after years of strict avoidance. I don't know about wheat.

I threw a party when I weaned Daniel at age 3---had macaroni and cheese for dinner! It's a sacrifice while you're BF, but you'll find that overall you learn to be creative and a vegan, wheat-free diet is actually very healthy.

Sorry to go on and on. Feel free to PM with questions me anytime.

DansMom replied: One last note: Don't introduce peanut butter and avoid other nuts as well---if you get referred to a food allergist, he or she will tell you this. When kids are sensitized to proteins like milk or egg, you want to avoid the super-allergens that might be even worse for them.

DansMom replied: I can't stop giving advice---sorry! The flu shot and MMR are contraindicated for kids with egg allergy. I was too late in finding this out (Daniel got the MMR). He won't be able to get the MMR for Kindergarten, but will get in with a special note from the doc.

boyohboyohboy replied: dansmom! your advice is so greatly appreciated!
I didnt see your name on your post, sorry.....

I just went to the grocery store, and saw for myself that the rice dream was a gluten containing product....and after checking the icecreams (soy) and finding milk and then looking for a yogurt...i just started crying in the supermarket. I am sure i looked stupid...
but man, this is going to be so hard. i mean hard..
everything contains these foods, and if it doesnt then its made on a machine that does, and its cross containminated..i am looking at the site you just gave me now...

man, i sure hope when we see the allergist on thursday that this is a mistake..
but on the other hand its nice to see a result.

i am also calling a nutritionist on monday for help with some diet ideas.

we did get a silk soy made for kids...he likes it thank God, and drank 4 ounce so far today!!!

the dr wants him on a special formula but its like 100 a case, and he said it tastes terrible...so we didnt get it.

is there enough calories and nutrients in the soy to live on? at this age?
and do you give your child vitamins then?

boyohboyohboy replied: you know it NEVER occured to me about the vaccinations either! i just wrote that down for my discussion with the dr...
also it is ok to have oat meal?
i was glad to see that, i was thinking i have no idea what to feed him. i checked for yogurt and will go the health food store tomorrow to see about snacks
the occupational therapist was also hopeful today that jake doesnt have all the issues we thought, and just now has a food aversion. that he now associates the food that is put into his mouth with stomach pain and thats why he spits it out, that it might not be a hypersensitivity after all..
i know its all guessing right now until the tests are back..

thanks again you are all helping alot!

amymom replied: Hey There! Tracy does have some great advice as she has BTDT. My mom was a celiac and that's why Mary Beth is having the biopsy for celiac in January. A person can be allergic to wheat and or gluten and not have celiac.

Anyway, I hope this info gives you some relief. When you find a good nutrionist that will help you a great deal. I am looking into a nutrition program that is offered in our county for children.

By the way, what was the name of the formula that the doctor recommended? We used Alimentum (9 1/2 yrs ago) to supliment MB and although I thought it was the grossiest smelling and tasting thing she would wolf it down. Go figure!!! She practically lived on it for two years, after BF. But if it is out of your budget you should check with the company or your state programs ~~~ there are some times grants for these sort of things.

msoulz replied: Stacy I am so glad you are getting answers!!! I sure hope you and he get some good nutrition and rest soon!!!

redchief replied:
Tracy, I'm glad you can't stop giving advice. Your advice is excellent and you've already been down this road, as have we. Most importantly what you're saying is that it's not the end of the dietary world. Food allergies can be controlled as long as you stay in control of what Jakob eats and is exposed to. For instance (and I know you're nowhere near this yet, but just to let you know for future reference) our school eliminated peanuts and peanut products from all of it's ingredients before Katie started showing sensitivities because there is a young boy in the system who is allergic.

I'm glad you're finally getting some answers!

~Roo'sMama~ replied: Stacy I'm so sorry you're going through this! It sounds like it's going to be tough. Lots of hugs and good luck!

boyohboyohboy replied: Is there such a thing as to much soy? I am feeding jake the soy yogurt which he seems to like, that was 5 ounces today, and then the soy milk, which he only is sipping at, and then the prosorbee baby formula...

the mash potatoes and chicken broth worked like a charm!

we are still very scared that he isnt taking in enough. I can honestly say I am starting to feel like he is wasting away, and I am scared we might lose him. I am calling the dr first thing monday and demand a conference. I dont feel like we have a plan in place or like we are being aggressive enough.

we also went to the health food store and got lots of good ideas there.

kit_kats_mom replied: I don't have any experience in the allergies department but I do have experience with watching your child not eat and the fear it can cause. I just wanted to tell you to try and relax. As long as he's acting ok, not lethargic and such, you really shouldn't worry. The doctors will not let him starve. If he is suffering from starvation or anything like that, they will put him on a feeding tube until he reaches a safe weight. After seeing Sammy on the feeding tube for a few months, I can promise that while they surely don't enjoy the insertion part, they get used to it pretty quickly and there is little to no discomfort.

I'm glad Tracy is here to give her advice. Now, if he does start to show signs of starvation, confusion, lethargy etc, or dehydration, then by all means, take him to the ER for IV nutrients and fluids.

kimberley replied: i am glad you are getting some answers. i am sorry i don't have advice, just wanted to send prayers and hugs.

msoulz replied: It's great that he is eating some stuff Stacy! You must feel a bit better about that.

Just wanted to send you a !!

quinnandjacob'smom replied: I'm glad you have some answers, but it's going to be tough to figure the whole diet thing out I'm sure. Wishing you lots of luck

DansMom replied: Hi Stacy, Tracy here. We did just do soy milk after a year, when other moms were going to cows milk (and I continued to BF)---the Silk brand is fortified with calcium and vitamin A and D like cows milk, and for a while I supplemented with liquid vitamins. He hated them though---and this is how I discovered that liquid vitamins will permanently stain your clothing .

In the soy milk, for a while I added a powdered probiotic called "Baby's Jarro-Dophilus" (Jarrow is the company that makes it)---it helps restore good intestinal bacteria that baby's need for digestion and absorption.

Good luck with all of this!

lisar replied: I dont know anything about food allergies. But this is a start as to how to make him heathly again. I am glad you are starting to get answers. I hope everything works out QUICKLY.

kit_kats_mom replied:
Too true. Especially when the kids spit them right out on you. We gave them to the girls in the bathtub right before we took them out.

boyohboyohboy replied: tracy I wish i could take you to the dr with me! I asked about the liquid vits today and he is going to start on them, and all his tests came back neg! no celiac disease, and his vitamin levels and iron are normal, which the ped. credited to my bfing!!! and he GAINED 2 ounces over the weekend.
Now for the bad news, he has a double ear infection and also pink eye!

He turned out to be allergic to soy also...and has started rice milk. we still see the allergist on thursday for more conclusive testing..but caleb had to take rice milk for a yr and then he out grew the sensativities..he was no wear as bad as jake though.

the mash potatoes with chicken broth is about the only thing he is eating..

so if you think of anything else, just send it my way, so far tracy is keeping jake going!!!
thank you

amymom replied: I haven't made time to read all the above again. So please forgive me if you already tried this..... Mary Beth lived on White rice for a while. Not much nutrician but some bulk anyway. We also browned ground beef and mixed it with rice and added some seasonings as she got older. Something like cabbage roll stuffing.

Good Luck Stacy, glad to see you are seeing the allergist. And phew on some negative test results.

boyohboyohboy replied: jake was tested for the SID today and they feel he does not meet the criteria to say he has this.
I feel like we are crossing things off the list, but then not really getting to the root of the problem then...
but he is getting thru this like a trooper.
he has learned to dance at music only he seems to hear!

CantWait replied: Glad you're getting some answers.

Both of you.

DansMom replied: Too bad about the soy, but it's great that you're crossing things off the list. It's pretty hard to find a margarine without soy and dairy---possibly Fleischmann's has a low-fat corn-oil margarine that would work (I'll check ingredients next time I'm grocery shopping). Be liberal with olive oil!

One thing Daniel ate a lot of when he started on solids was avocado. If it's ripe enough (brown skin on the outside but not indented anywhere), you can mash it, and it is so rich with good fats. I would buy them green, and let them ripen in my fruit basket. I also remember giving him Gerber jars of peaches and pears (the finger foods, not the mush). And, I'm ashamed to say, I would feed him with a spoon while he watched Baby Einstein videos---unfortunately, he would eat significantly more when he was focused on the tube (I think Cary did the same thing with Katherine for a while). Even then, he rarely ate a full jar---maybe a fourth of one of those little jars.

I think kids with food allergies are just like that, not heavily into food like other children. When I see other kids, I am still amazed at how much they can eat and drink, and how eager they are to get at the food! Daniel eats enough now, but it's still a struggle to get him to drink anything. He isn't interested in food and quickly turns to other things. He doesn't like candy, cookies, cake, frosting or chocolate. He's still underweight for his age group and noticeably the smallest in his preschool among the boys and the girls. It's turned from a curse into a blessing in some ways, though---as far as candy goes, he couldn't care less about it.