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Southern New Jersey

I am a Mom to 2 amazing and fun daughters and wife to a great guy and a wonderful father!

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Kayla, my oldest. She is 4 1/2 and is a sweet, loving and silly little girl. She took us 2 ½ years and 3 IVF’s to conceive. Kayla is allergic to dairy. We manage her allergy and work to balance her safety with giving her a normal childhood. Kayla loves to read books and play games - she amazes me every day.

Alysa, my youngest. She is 3 years old and is a silly little spitfire. She’s our monkey and loves to climb on everything. She was a “natural” baby, but it was only b/c of my wonderful doctors that we were able to stop an impending miscarriage. Alysa suffers from Acid Reflux Disease and sleep apnea. She may be little, but she has a big personality. She adores her big sister and is so much fun to be around. She keeps me laughing every day.

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Monday, May 14, 2007
Kayla's Allergy Diagnosis
So it's officially Food Allergy Awareness Week. As I stated last week, I will take this week to do some posts on Kayla's allergy. For my first - I will tell you how she was diagnosed.

Kayla has been allergic to dairy since she was born, but was not officially diagnosed until she was 9 months old. As those who've been here before know, Kayla was an IVF baby - but once I got past the high risk portion of my pregnancy, I had a picture-perfect pregnancy. Surprisingly (aside from the hormone issues of maintaining an early pregnancy), my body does pregnancy very well. She was 2 days early and I had an uncomplicated delivery. She was the picture of health. The first week was the typical newborn honeymoon period. All she did was eat and sleep. She wanted to sleep long hours at night from the beginning. We were even told by her Ped that we needed to wake her to feed her, since she went over 5 hours at night the first few nights. [Let's say - I didn't follow this advise with Alysa]. At about a week of age, this all change. She started to get very irritable during feedings - she would pull away from the bottle and cry and would cry for short intervals after eating. [At this point she was getting a mix of bre*st milk and formula - she ended up solely on formula at 3 weeks of age b/c my body - due to the hormonal problems I just didn't produce, well, barely anything]. Within a week, she would scream for 2-3 hours after EVERY feeding - and when she would eat every 2-3 hours, well - you get the picture. She was diagnosed with GERD (Gastroesophageal Reflux Disease)at 1 1/2 weeks. We first tried non-medical intervention - changed her formula to a hypoallergenic one, raised her bassinet so she slept on an angle, thickened her formula and held her upright for 20 minutes after every feeding. None of it helped. There were times I'd have to feed her again b4 the crying stopped. At the age of 2 weeks and 3 days, we ended up in the ER b/c she refused to eat AT ALL. It was at night and her Ped knew she needed medication but could not prescribe it w/o her being seen. She was way too little to skip a feeding.

She was put on Zantac and we ended up seeing specialist. She was so bad that when she finally started to coo (she was hardly ever not in pain, so she cooed rarely), that you could hear that her voice was horse. At 2 1/2 months she had an Upper Endoscopy (a camera down her throat) to rule out a physical reason and to see the extent of the damage. Luckily nothing major was found - but she was still bad. She finally started to outgrow the GERD (or so we though) at 4 months (she was rediagnosed with it at 18 months). This was a very hard 4 months for us. Aside from the typical newborn wakings and exhaustion, we would take turns pacing the floors with an inconsolable baby. And the cry was so intense there was no doubt to the pain she was in. My heart broke for her. There were many nights that I would just sit there and cry with her.

She also got eczema over that winter. In a lot of food allergy cases, eczema is a symptom. Although I had no idea and food allergies had never entered my mind.

At 8 months, I was told by a nurse at her Ped's office that it was ok to introduce cheese and yogurt. We had not introduced fruits and vegetables until she was 6 months old. She had a couple bites of cheese twice and then when I gave her yogurt, her face broke out in hives around her mouth within minutes of eating the yogurt. Knowing what it was, I had called her Ped (it was a Sunday). A few hours later, she vomited. J and I watched her over the course of the next few hours for breathing difficulties, but she did not have to be seen that day. The Ped we saw that day said he wasn't convinced it was an allergy b/c the hives were concentrated (completely irrelevant), so he wanted me to try again in a few days. That did not sit well with me, so a week later I put a tiny amount of yogurt on her arm and she did indeed break out. That was enough evidence for me. At her 9 month check-up her Ped (the one she regularly sees) had her blood tested for dairy and soy. Soy was negative and dairy was positive. We were then sent to an allergist.

We were happy to have a positive blood test, especially since food allergy testing can be very inaccurate. There are a lot of false negatives and positives. We obviously had no doubt she was allergic from her reaction, but it's good to have the medical back-up. Almost a year later her Ped prescribed epi pens just in case. Allergic reactions only get worse with more exposure - it can go from an "innocent" reaction one time to a life-threatening anaphylactic reaction the next with NO warning.

Looking back her GERD early on was most likely from her dairy allergy. It wasn't completely caused by her allergy b/c she still has GERD and she has had no contact with dairy since June of 2005. But I wish I knew then so we could have helped her sooner.

To this day, Kayla has never had a life-threatening reaction, but food allergies by their nature are potentially life-threatening. And with her being contact reactive, it makes things even more sticky. So we take every precaution that we can. But I'll get more into that in another post.

Here's a pic of my Little Kayla at 8 months after eating the yogurt...
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posted at 9:45 AM  

At 2:56 PM, Blogger ChupieandJ'smama said...

Great post! I forgot to put the zantac in mine and the lactalose. Jason was constipated from day one. That child never went to the bathroom. It was bad! He used to eat prunes all the time to help with that. Why didn't food allergy SCREAM out in my brain?

At 3:41 PM, Blogger Jill Norwood said...

I feel for you... my step-son has food allergies as well and I think he was diagnosed at about 9 months. No dairy, wheat, p'nuts.... He's slowly growing out of them (he's 8 now). Hopefully your daughter's will lessen, too.

At 5:49 PM, Blogger Michelle said...

poor Kayla! I'm sorry it took them so long to figure out it was an allergy she had!

My Kayla was like that in the beginning - sleeping long periods throughout the night and not waking to nurse. We had to wake her up too, but she would fall right back to sleep once she started nursing!

At 12:08 AM, Blogger Jennisa said...

Thanks for sharing. I might just have to do a post like this on my blog this week...hope I remember! I have major "mommy brain" this week so far...

At 2:34 AM, Anonymous Christine said...

Poor Kayla.I'm glad you were finally able to find out what you knew all along. As mother's we have a sixth sense about things that we feel aren't right.
Hope you had a wonderful Mother's Day!

At 4:17 PM, Blogger org junkie said...

Oh Sue, the picture of your girl brings back so many memories for me. My son would get scabs on his face from constantly rubbing at the rashes. People often thought it was dirt that I never wiped clean. I used to get so angry. But you are totally right, we just have to make people more aware because if it isn't something they are dealing with, they just don't know.

At 9:03 AM, Blogger nowheymama said...

I agree with Org Junkie - that photo brings back lots of scary memories. Thanks for posting for Food Allergy Week.


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