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. :)