Friday, July 16, 2010

I Apologize

I apologize for not post any recipes for allergy friendly foods. I am holding off until we meet with the Allergist. When we get an idea of what we are to stay away from I will be posting what she is eating. Right now is is eating:

Breakfast: Banana and blueberries with 5oz of Neocate Tropical Formula

Lunch: Peas, corn and watermelon with 5oz of Neocate Tropical Formula

Dinner: Carrots, sweet potatoes and blueberries with 5oz of Neocate Tropical Formula

Sometimes she get cantaloupe and I have just started her on Apples. I know there are other options for fruits and veggies especially if we mash them up. Tinleigh is a very picky little girl and does NOT want to eat anything that resembles baby food. She gets two bottles a day of Neocate infant formula, one before nap and the other before bed. Once we get her on some filling foods we will start to take one bottle away but right now she needs her calories.

Thursday, July 15, 2010

Finally Back On Schedule

After two weeks of being cranky all day and night Tinleigh is finally acting like herself again. She is sleeping through the night. The nutritionist set some samples of the toddler formula that they wanted her on and we have had great luck with the tropical flavor. She is drinking 3 cups a day of that formula from her sippy cup and is taking two 7oz bottles a day of the infant formula. Only two more weeks till her appointment with the allergist. :)

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. :)

Wednesday, July 7, 2010

Phone Consult

Today I had a phone consult with a nutritionist. While I did learn some new things from her she really couldn't help me out a lot. We really can't move forward until Tinleigh see the allergist. The way the nutritionist and the gastroenterologist talked they will not do the prick testing on her. This makes me nervous with all the false positives and negatives that happen with the blood tests.

While she did suggest and new foods to try with her, she did suggest that we take away her crackers and cereal bars that we eats somethings. They do contain rice flour and she tolerates them, but she seems to think Tinleigh shouldn't eat them. Thinking she is having a reaction but not showing any signs. This upsets me just because that's two less things she can eat.

Tinleigh is also refusing the Elecare formula that she was switched to. So we are going to continue with the Neocate, they gave me a recipe to up the calorie intake. I'm also to add a teaspoon of canola oil to her veggies to give her some added calories. The hospital is mailing me out some samples and more information to look over and once I get some results from the allergist I can call the nutritionist back and we can start her on a diet. I can't weight till that day. It's like a count down to Christmas! :)

Monday, July 5, 2010

Food Sucks!!!!

Yeah, that's what I think about food. I hate that Tinleigh is barely eating anything. Here it has been 6 days since I gave her Pediasure and we are still having problems. I just don't get it. I have not given her anything new since giving her the Pediasure. She is still waking up in the middle of the night uncomfortable. I have been giving her allergy medicine two a day.

She is back to taking 4 bottles a day because she won't drink enough formula if I just offer her a cup. I know there are kids out in the world who have more problems then Tinleigh, I get that. It's just hard being on this side having to wait so long to get into an allergist to find out answers. I pray we can keep her weight steady for another 5 weeks, that's when her appointment is.

Saturday, July 3, 2010

I Hate Reactions

Yeah, you heard me. I HATE REACTIONS!!!! Since Tinleigh turned one in June 17th we gave the trial run on Pediasure. If you are not familiar with Pediasure it is lactose free but contains milk and soy proteins. She had her appointment with her pediatric gastroenterologist on Tuesday and she asked us to try it. I knew in the back of my mind that she hadn't outgrown these two allergies but tried it anyway.

Wednesday came and I gave her the Pediasure. She took 5 oz. By 5pm that evening she was broke out. I gave her allergy meds and hoped for a descent night. She did well, went to bed at 8pm and woke around 7am yesterday. Now yesterday was a different story. She just plain had a bad day. Still broke out, very fussy and didn't sleep last night. She spent most of the night itching her face. I hate seeing her like this. I usually break down and cry with her.

This is why I have her scheduled with a pediatric allergist. I hate to have to put her through the testing but I need to know everything I need to keep her from. It's so hard to figure everything out on your own with there are multiple allergies. If you have a little one with food allergies I would love to hear from you. Please leave a comment. :)

Thursday, July 1, 2010


My name is Brooklyn. I have been happily married to Brian for 6 yrs. We have two little girls Ainsleigh who is 3yrs old and Tinleigh who is one. This blog is dedicated to Tinleigh, she has numerous food allergies.

While everything we are doing is trial and error we are making the best of it. Her diet is very limited. Right now I know she is allergic to milk, soy, wheat, gluten and oatmeal. I think she has out grown her rice allergy, there are a few things she eat made with rice flour and she tolerates them very well. While some would say that's not a lot of allergies, it's finding stuff for her to eat.

We have an appointment on July 30th with an allergist. This way I can know if she is allergic to anything else. If seems like if I give her something with many ingredients she will be very fussy. It's just so hard to pin point.

I know there are so many parents out there that are struggling, I still am. So I have this blog to share how we are doing it. What she is eating. How she is progressing. There are days when I just sit an cry, feeling so helpless for her. This is a place for my thoughts. I hope you enjoy!