Friday, July 9, 2010

Tinleigh's Allergy Story

*WARNING- This a VERY long post.

Today I am going to share with you how we come to find out Tinleigh had food allergies. From the beginning she was fussy, not overly fussy like cry for hours at a time, but fussy. She was kinda gassy the night she was born. No one thought anything about it.

After about six weeks for so she seemed to be going on nursing strikes. When I would try to get her to latch on she would scream. So I was pumping and giving her my milk through a bottle. I was fine with this. Then after a couple days she would be fine and nurse again. This happened 4-5 times. When she was 4 months her Dr suggested that we start her on cereal. Before this she wasn't sleeping the greatest, she would get up 2-3 times a night. (I was spoiled by my first little girl, she starting sleeping through the night at 3 weeks)

It seemed like once I started the cereal her sleeping habits got worse. She didn't want to take naps and she was waking every hour at night. I just thought she was starting to teeth, food allergies never crossed my mind. In the mean time while I thought she was teething she started developing a rash around her mouth where she was drooling. I thought, it's the beginning of winter, the dry air, etc. I just made sure we wiped her drool to keep her face dry and starting putting Aquiphor on it.

When she was just a week or so shy of 6 months I started supplementing. I gave her the first bottle of formula and when she woke up from her nap that afternoon I knew something was up. Her face was beet red. No hives or breathing trouble. She just had really bad rash! So i waited a week and tried a soy based formula. Sure enough the same thing happened. Bright red rashy face. This was the week between Christmas and New Year's. I called the Dr's office right after New Year's to get an appointment.

We arrived at the Dr's office, I already new what they were going to say. "She has a milk allergy. There are two hypoallergenic formulas on the market try on of those and see what happens." At this appointment we figured she was allergic to milk, soy and rice. They gave her some allergy medicine to stop the itching and sent her for blood work. A couple days later the results came back. The Dr called, her results say she doesn't have any allergies. "There's no way that can't be right" I said. Meanwhile the first formula I was giving her she was throwing up. I tried the other option, she did OK with it, but was having severe diarrhea.

I called the Dr's office back the next week and they referred her to Riley Children's Hospital. They wanted her to see a pediatric gastroenologist. The soonest they could get her in was 4 weeks. I thought to myself how in the world is she gonna survive when she has already lost almost 2lbs in two weeks. Finally they said her only other option was to put her on Neocate, an amino based formula for babies that have severe food allergies.

Some parents who have kids on this formula are lucky, their insurance pays for it. First off if get it from the pharmacy it's $200 a case. That's $50 for a 14oz can. You will go through at least two a week. Who on earth can afford that?! I called Tinleigh's insurance company to see if they would cover it. NOPE! NADA! They guy said we don't cover food only medical. This is a medical food people, I'm not trying to get free food.

I knew we weren't going to be able to afford over $400 a month just for formula so I searched the internet. I found Neocate's website and they were cheaper, only $139 for four cans. For some reason Ebay popped into my head, sure enough there were 3-4 pages of Neocate. This is where we have been ordering it from ever since. I have a limit that I will spend per case (4 cans). This most I have paid for a case is $110 and the least is $80.

So we got her started on the Neocate and she improved quickly. After a few days she was sleeping better, and wasn't as fussy. She was a totally different baby. We had stopped foods for two weeks, we need her face and body to clear up before trying foods again. It took about a week or so for her rash to disappear. So we started the food process all over again. I tried oatmeal for a few days. Sure enough she started getting fussy again. We put another food on our list of allergies.

By the time her appointment a Riley Children's Hospital came she was only eating sweet potatoes, pears, apples and formula. The Dr said to keep her on this formula until she was a year. After her birthday we could see how she did and try to introduce cows milk. Other than that she encouraged us to try other foods and to come back when she was 9 months for a re check of her weight. I was a little disappointed. I don't know what I really expected, I guess maybe I wanted her to tell me what to feed her.

March came and we took her back for her 9 month appointment. Same things, nothing new. Still eating the same things. She instructed us to make an appointment when she turned one. I had been searching the internet for months by this time. Trying to get ideas on what other parents have done. There is a lot of information on the internet but not what I was wanting. I wanted a site that I could compare Tinleigh to. I wanted a place where parents could come and share their stories so I could have an idea of others have dealt with this.

When Tinleigh was 11 months old she started refusing baby food. I'll admit, I freaked out. What the heck was I going to feed her? Do you realize how many things have a milk or soy product in them. So I set out and made dairy free, soy free pancakes. She seemed to do OK with them at first. This is where it gets confusing when you have a handful of ingredients. Which one could be causing the reaction?

I started removing gluten and wheat from her diet. She became happy again. So I added gluten and wheat on my list of things to stay away from. Let me just say if you aren't familiar with wheat and gluten recipes a lot, I repeat a lot of them call for a rice flour. Who's allergic to rice? Tinleigh.

I finally got tried of no one really helping me so I called to get a referral to a pediatric allergist. Yeah, turns out there's a really long wait time on getting into an appointment with them too. Six weeks! This was for the first available appointment! (At the moment we have 3 weeks left time the appointment)

Tinleigh is one now, she weighs 17lbs. She's not even gained 10lbs since she was born. Her diet consists of peas, corn, carrots, watermelon, bananas, and formula. She isn't eating anything fillings so she is waking at night for a bottle. I have talked with a nutritionist and once we get her results on the allergy testing we will be able to get her on a diet. I can't wait to be able to know exactly what I can feed her.

I have started this blog to help other parents that are just starting out with food allergies. I want to be a shoulder for you to cry on, because you will. It's tough, seeing them so helpless and in pain because you feed them something that their body can't tolerate. I want to be an ear for you to vent when you have no one else that understands. Believe me, I know this all to well also. I don't know how many times I have been told, "She will grow out of it." While this is possible there is also the possibility that she won't. Only time will tell. :)


  1. Hi Brooklyn
    I found your blog tonight through your other blog and wanted to share my blog with you:
    Although our stories aren't identical, they are very similar. We are finally on the road to recovery as a result of alternative medicine. Most recently we started taking our son to a Traditional Chinese Medicine doctor, which has had amazing results for him. Our allergist, we learned, is good for allergy testing, but other than that, has provided us with not much help. I hope your experience is a better one. I do have rice-free recipes on my blog, we actually just started reintroducing it after taking Ry off of it for the last 8 months. Okay, my comment is getting too long :-) please check out my blog, I hope there is some helpful info there for you and if you have any questions, please ask! I want to help others in this similar allergic journey!

  2. Hi Brooklyn,
    I came across your blog and thought I'd leave a comment. I really sympathize with you and all the frustrations of food allergies. My oldest son is 2 1/2 years old, and we went through a very similar situation when he started solids and supplementing a bit with formula. Whenever he ate anything with milk or soy proteins, he would start to seem unwell--trouble sleeping, obvious discomfort, darker circles under the eyes, diarrhea... It was so discouraging any time he would try a new food to see the reaction signs again, so disappointing and hard to figure out how he would get enough nutrition.

    We did not do allergy testing as I dreaded it and felt that we had a pretty good idea what he was allergic to--not such a good idea of how to deal with it. I know for certain he has sensitivities to milk and soy proteins (it's very common for those two allergies to go together), gluten, and corn. He also seemed sensitive to melon, grapes, and most berries, although he seems to better with the fruits now than a year and a half ago.

    We tried all kinds of things as milk substitutes: Lactaid and Rice Milk were the 2 big ones. He had issues with both. People have told me since then that anything that has calcium added to it (like Rice Milk) potentially has milk protein in it. So it's possible your daughter isn't allergic to rice, but the rice cereal may have additives she is allergic to. We also kept him on organic baby food until he was 15 mos just because it was so hard to switch to anything else.
    One thing I think should be broadcasted to all parents is that a lot of food you buy in the Supermarket is genetically modified (contains GMOs)--this includes milk, soy, corn, anything with high fructose corn syrup, and sugar (from sugar beets). This covers almost everything in the store that is not a fruit, vegetable, or rice. :( If you want to learn more about this, you can check out Dr. Mercola's website--he has a lot of information on GMOs. Another good one to check out is
    We also noticed a correlation between vaccines and allergies, that our son had more issues with food/health after vaccinations. We even spaced out and got fewer vaccinations before we knew there were allergies, but that was not enough. He will not be getting any more vaccines for a very long time...the last time he got one, any time he had a little tiny bit of milk in anything, he would get to the point of banging his head and having major behaviors. It was scary and difficult--so no more vaccines for him.
    Oh, one more thing--milk comes in a variety of forms and names, so you want to be careful with shopping. Casein and whey are also milk products, and even certain baby foods have them. Also, certain types of food are grown with a peanut gene inserted into them (corn and maybe some others). If you want to be on the safe side, you might want to think about going organic as much as possible. There is a good website with recipes for people with milk/soy allergies: MSPI Mama
    (MSPI stands for milk/soy protein intolerance). Also, for me snacks have been the most difficult thing--my favorite is organic Mum Mums--they are made from rice. We also use corn or rice tortillas with honey as a snack, and finally after waiting a long time, my son seems to do okay with Ritz crackers. Be careful about snacks--a lot of them, even things like Cheerios and Goldfish crackers have milk products in them.
    Good luck and God bless you as you go through this process! I sincerely the allergy testing will be a great help in determining what your daughter can eat and that she will outgrow her allergies in time.