Eosinophilic Gastroenteritis and Colitis

I don't know anything about this in particular but my son had many food allergies as an infant. He thankfully has outgrown some of them. What I found as the best "milk" substitute was Vance's Dairi-free. It is potato based and does not contain soy or milk products. The nutritional value of this is the same as whole milk. My son love it. It comes in powdered form and in chocolate and vanilla. It is also a good substitute when you need "milk" as an ingredient. Beware the "processed" products. The more ingredients in the foods, the more likely she is to react. Since you love to cook, you need to make your own food for her, without the preservatives and all the other additives. There are many websites that have wheat-free, milk-free, etc. recipes. I spent a lot of time researching and then experimenting to know what works. We eat much healthier as a result of our son's allergies. Find a good allergist too. They can help tremendously. Good luck.

I know nothing about the diagnosis you are getting, but alot of the symptoms are very similar to my daughter when she was just a week or so old. We put her on nutramigen formula and all has been well since. She was allergic to milk based formula, and her body couldn't break down the proteins in soy formula. I am sorry you and your child have to go thru all of this. Good luck!

Brittany,
I so feel for you...other people have these happy smiling babies and you're just trying to deal with feeding and pooping. I've been there, but probably not to your extent. My daughter seemed to be reacting to everything as well, but it turned out she has a corn allergy or intolerance (didn't show up on allergy tests)in addition to dairy and beef. I could send you links with info on that...corn is basically in or on almost everything, including fresh produce and meats, any fortified items (including baby cereal) etc. It's also in most medications (maybe in the enema?) and most docs don't know anything about it. It's also in normal IV solutions. Plus a whole list of ingredients that are in most foods we eat (citric acid, ascorbic acid, maltodextrin, and on and on). Corn is notorious for not showing up on tests...I think patch testing is the best, but we haven't done that. It's just clear to me, every time my daughter has reaction, I can say, "oops, that juice had natural flavors" or, "she ate a non-organix strawberry" My DD also had trouble pooping, although not until she started solid foods. She didn't poop for 3 weeks, and would cry and strain when she did...the ped's nurse insisted we try karo syrup (corn) which was the first indication that she had a corn problem, since it didn't help pooping but she reacted to it (her reactions were also silent reflux) or maybe this early intro to corn caused her later reactions? She had the x-ray portion of the upper GI at 7 months, which showed reflux and some delayed gastric emptying, but not severe. I nursed her, but she would have been on Neocate if I hadn't, and I wondered if she would tolerate it (I've heard that it sometimes isn't tolerated). My daughter didn't have a problem gaining weight, in fact she had the opposite, but at 2.5 is now a "normal" eater (if there is such a thing with toddlers). She is back on wheat and eggs (which we avoided until she was 2 due to her reactions...lower GI problems) but her diet is very limited. I have started to look into a program called AAT or Advanced Allergy Therapeutics. It's alternative medicine and sounds a little hocus pocus-y, but it has a track record of getting rid of food and other allergies, and the traditional medical community has nothing to offer. Unfortunately, I've had no help from docs to deal with her food issues, even being treated like I'm making it up. But we did really like her GI doc. Are you in St. Louis? Let me know if you want any additional help from me and good luck! C.

oh, by the way, I have my daughter on probiotics...no doc told me to, but from my own reading realized that her reflux meds were eliminating all her stomach acids etc...we use Kirkman Pro-Bio Gold which is hype-allergenic. My ped actually agreed it wouldn't hurt since she knew of allergists who recommended it for eczema. When we did see an allergist, (who was no help), he suggested that maybe she has Eosinophilic Esophagitis, but we didn't pursue it because her GI said she'd be throwing up a lot which she wasn't. Our big breakthrough with our daughter was when she was almost two and we realized that we had to avoid all corn and corn derivates, no matter how minor...the rice milk we were giving her had corn, as well as her juice (in addition to other things) so once we switched those products to non-corn versions, she started sleeping through the night etc. We still mess up sometimes though since corn is so tough to avoid, but day to day with her is SO much easier than back in baby days. Good luck.

I can't imagine what you are going through and I have no personal experience with this,
but I will tell you that I was allergic to peanut butter, dairy, pets, and grass when I was very young. I did grow out of it as I got older (around 7 or 8 I think). I later became allergic to pets again, but I have no problems with dairy, peanut butter, etc. I know it wasn't nearly as severe as what your daughter has, but there may be some hope that she will outgrow some of it eventually. Apparently all the cells in your body are totally replaced every 7 years, so that can mean that certain allergies can appear or disappear.

I have recently started going to a chiropractor in Columbia, MO. She is great. I know it sounds like your daughter's situation has nothing to do with a chiropractor, but my chiropractor was telling me about a close friend of hers who has been a chiropractor for a long time. This chiropractor had a family come into his office a month or so ago with a 5 day old infant. The baby had very severe reflux and doctors were about to perform surgery within the next few days. They adjusted the baby a few times and the reflux totally disappeared, no need for surgery.

She has told other accounts of people being cured of things you wouldn't dream could be related to chiropractic. She explained how all the nerves which go through the spinal column are what controls every function in your body, from the lungs, to motor movement in the limbs. When a nerve is pinched or sacrificed, the function suffers. They also mentioned that the birthing process puts a lot of stress on the spinal column and that adjusting a newborn can be very beneficial.

Anyway, PLEASE talk to a chiropractor to see if there is anything they can do to help before she gets put on more meds or goes through surgery. Try to find one that you trust, like one that a friend goes to or something. They can make it affordable--I pay $30 when I go and my husband pays $15.

It might also be beneficial to talk to a naturopathic doctor. I recently read an article about people who are put on medicines that actually make their situation worse, and once all the meds are flushed out of their body, they are totally fine. I am not some crazy person who is against traditional medicine, but I did do a lot of research on traditional and alternative medicines after my husband had cancer a year and a half ago. Some of the drugs that were used to treat his cancer make him more likely to get cancer later on, so I read up on alternative and natural medicine and nutrition as much as I could. Anyway, my point is, a natuopathic doctor would look at the underlying CAUSE of what is going on and not try to fix it with the first prescription that came to mind. They would look at fixing the root of the problem with methods that have zero side effects. That is also why I would recommend seeing a chiropractor in addition to a naturopathic doctor. I know it seems like they might be expensive, but if they could help cure the root problem, then it would probably be cheaper than all the $$ you would spend over the years on traditional drugs and doctors. I don't know, just a thought, but it's definitely worth looking into. At least then you would know that you didn't overlook any options.

I'll be praying for you, your sanity, and your family!
C. G.

You also might try a chiropractor/kinesiologist. I'm guessing there are some in KC, if not there are several good ones in Wichita. They can do amazing things.

My now seven year old son went through something similar, minus the added allergies you guys are experiencing. He was on necoate for the milk/soy protein allergy from about 2 months old until about 15 months and was also on Prevacid and Carafte for severe reflux. We did not encounter any severe feeding issues that that age, thankfully, though I will say he has always been pretty picky and did do some OT for sensory food aversion which is quite common with kids who encounter these types of issues in the early years.

I will say, though, that thanks to complete avoidance of the dairy and soy early on, he did outgrow his GI allergies. He went on to have some lactose intolerance (which makes sense as the body simply stopped making the lactase enzyme when it wasn't being exposed to lactose anymore), however that seems to have lessened quite a bit in recent years. He now drinks soy milk mostly, but can tolerate dairy cheeses, ice creams, etc really well. So, we are very happy!

As far as the Neocate, my understanding, if I remember from back then, is that it is amino acid based. There are no proteins in it that need to be broken down. Instead it is built up with amino acids, so it really should not be causing any troubles with regard to the GI allergy. Perhaps the reflux is not adequately under control? That would be my concern. It took a long time to get my son's reflux under control at that age. he was miserable. The golden ticket for us was Prevacid but also Carafate which coats the throat to keep any acid that does come up from hurting. That made a huge difference. Hopefully, the endoscopy will ttell you something with regard to the reflux. Have they ever mentioned a pH Probe? You admit overnight and they leave a small tube inserted down the nose into the throat that can measure any acid coming up. When my son was four, he had outgrown the protein allergies, but was having bwoel trouble and was tossing and turning a lot at night. I suspected he might still have reflux and we just dind't know it. They scoped him (but found no damage) but also did the probe and, sure enough, he was refluxing like craxy adn we had no idea! So, he continues with a reflux med now and does fine.

As for the other allergies, there's probably no way to tell how she'll do in the years to come yet. However, complete and total avoidance is best beginning as soon as possible. This will help increase the chances of her outgrowing any long term issues, though there is no way to be sure. I know you mentioned she hasn't had any food in about a week and a half, but keep in mind that any noticable changes can take over a month or two to begin showing as it will take some time to get the "bad stuff" out of her system. Hopefully, you'll see a difference with the neocate really soon!

Good luck and hang in there. It will get easier and you will get through it!

Dear B.,
I hope your insurance company is allowing you to get occupational therapy. My daughter had a totally different 'disease,' actually a birth defect, gastroschisis, but some of those symptoms.

1. Ask your doctor if your baby can take probiotics in order to poop. My daughter just got off laxatives for 10 yrs (long story), takes acidophilus and finally has a normal life. Again, her situation was different, but I thank God for probiotics. She had diarrhea for a year followed by constipation for years (but it was due to good bacteria being killed by antibiotics, I believe). At any rate, I hear probiotics is good for Crohn's too....and so I'm wondering if it could help your baby's illness as well....

2. When she was a baby, my daughter would not eat after being tube fed. Our OT had me brush her arms/legs with a soft brush, compress her joints and rub the palate behind her teeth (sensory integration). It worked for us. If you don't have an occupational therapist or are denied one, you might possibly look up sensory integration.

3. I guess to cope, accept all the help you can get and pray. I will pray for you.

My situation was different but I hope these ideas might do some good.
God bless!
P.

I have had Eosinophilic Gastroenteritis and Ulcerative Colitis. Don't do anything rash until you talk to me, this disease is awful, but so is the treatments they want to put us on. I am a Mayo Clinic patient and have been told to have my colon removed 7 times, I am now in total remission and doing awesome. I owe it all to my friend who introduced me to Dr. Carl Hastings. I'd be happy to talk with you offline if you'd like. My phone number is ###-###-####. I look forward to hearing from you.

R. Jackson

I really hope your baby is doing better. Did you talk to R. Jackson (the gentleman that offered to help you)? My 13 month son has the same issue and I would be so grateful if you could share what you have learn.