It is incredibly hard to find baby finger food puffs without milk or soy and isn't sweet potatoes or banana flavored! In all the brands we have found ONE: HappyBaby organic apple flavored puffs. They are diary, corn and soy free!
We have to however trial wheat by trying these.
As I type my little girl has just a couple of these little puffs and thinks she is in heaven feeding herself! It is truly nerve wrecking to watch to see if she has a reaction to wheat.
Wait and see....
Saturday, August 18, 2012
Tuesday, August 14, 2012
FPIES
Since Sophia was born I have learned more than my fair share about milk intolerance, soy intolerance, MSPI (milk soy protein intolerance), food allergies...the list seems to go on and on. Because some of the wonderful ladies on babycenter.com have provided me with some extensive literature and not so subtle nudges, I have been researching FPIES.
Food Protein Induced Enterocolitis Syndrome
Described as this (taken directly from http://www.thefpiesfoundation.org/)
Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.
It pretty much fits Sophia to a T. The weird allergies (bananas, peas and sweet potatoes) as well as the more common ones (milk and soy).
I forgot to mention in my earlier post that when presenting our pediatric gastroenterologist with the basic information on non- IgE allergies/FPIES he agreed 100% because of the severity of Sophia's reactions and the negative RAST testing. He said without a doubt that it IS allergies.
There is a pediatric allergist who specializes in FPIES right here in Michigan, albeit 1.5 hours away but no way am I putting a limit on the care she receives! Just hoping the insurance will cover it!
Food Protein Induced Enterocolitis Syndrome
Described as this (taken directly from http://www.thefpiesfoundation.org/)
Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profuse vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, a negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.
It pretty much fits Sophia to a T. The weird allergies (bananas, peas and sweet potatoes) as well as the more common ones (milk and soy).
I forgot to mention in my earlier post that when presenting our pediatric gastroenterologist with the basic information on non- IgE allergies/FPIES he agreed 100% because of the severity of Sophia's reactions and the negative RAST testing. He said without a doubt that it IS allergies.
There is a pediatric allergist who specializes in FPIES right here in Michigan, albeit 1.5 hours away but no way am I putting a limit on the care she receives! Just hoping the insurance will cover it!
3rd GI Visit: August 14, 12
Sophie’s 3rd time at the pediatric
gastroenterologist was today.
First: He is very impressed with her GERD progress but is
still worried about the amount of meds she is on to keep it under control so he
has ordered her to go to the hospital on Sept 19th to get a 24hr PH
probe put in, basically they stick a tube (the probe) up her nose, down her
throat and placed right at the top of her stomach. We will have to record her
every cry, hiccup and nap for the 24 hour period it is in. The BAD part is, she
cannot have ANY of her meds for 2 days prior to the procedure. He said that
will be fun. <-seriously he said we will be in for a fun 2 days… I can just hear his voice dripping with sarcasm as I type this…
Once we get the results (2 to 3 business days after the PH
probe is complete) we will know the severity of her reflux and know 1. How to
better handle it and 2. Any further testing to be done.
Second: He reviewed her latest tests and decided that the
severity of her colitis and shedding of the lining couldn’t be “just”
intolerance. Even though her RAST testing came back within normal range (at 3
months old) he said it is an actual immune response. He will be prescribing an
epi pen for severe cases once she turns 1yr old. Also he told us that she will
be on formula (but graduating to toddler formula at 14 months) until age 2 but
wants to test periodically with Nutramigen formula between the months of 10
& 12 and 16 & 18 to see if she can handle the broken down proteins in
Nutramigen and we can better scale her allergies.
On a good note he is glad that she has finally gained all
the weight back that she lost when she was so sick and is perfect! He said the
Neocate has done wonders the last 5 months and we won’t take her off until we
both feel she is ready.
He did say that her allergies to bananas, peas and sweet
potatoes should be outgrown by age 5. He emphasized on the word should. As for
new foods he gave us a tip to cause the least amount of GI upset. He said to
place a swipe of the new food in her left cheek as well as a swipe on the
outside and wait for a reaction. If no reaction (he said obviously the food on
the outside will be wiped off) we can try half a teaspoon the next afternoon
and increase from there. No more than 1 new food every week and give it a week
after the “fail” of a food to move on <- which we knew.
Overall it was an exhausting trip. I am grateful for this
doctor though, he is extremely thorough and he actually listens!
Saturday, August 4, 2012
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