(long)

[Guest guest]

My son was born after an unneccesary induction (my son was due on the

holidays so the doctor induced him 2 weeks early, without doing anything

to make sure he was ready) The inducion resulted in my son's oxygen

being cut off. He had to be resucitated throughout the day and put on

oxygen and respirators. Then he had terrible colic. He would scream all

the time. His weight was okay on the 50th percentile even though he was

2 weeks early, but, his dad and sister were always way between the 75th

and 95th percentiles. Around 4 months old, his weight started to drop on

the percentiles, and by 6 months old, he stopped growing at all. That

is where things got really hard. At first, I didn't have insurance, so I

couldn't take him to a doctor. I had to go to a community clinic and get

a referal before anyone would take him, and of course, I was unable to

get the referal. At 9 months old, we got new insurance, an HMO, so we

needed to get a referal, but from our own private doctor. The first

doctor was a pediatricain and wanted to run all sorts of tests and

refused to give us a referal until she ran all her tests. He had

everything tested, This took a few more months. Meanwhile, he throws up

everything he eats and has the terrible diarhea. The only thing he could

keep down was breastmilk. He managed to maintain his weight for the

most part, going down by a pound at one point and back up. He had to be

taken to the hospital a few times, for dehydration. Meanwhile, the only

diagnosis I was getting was a virus or the flu. That is it. I was even

told the projectile vomiting was just a little spit up which they said

was normal (until they saw it happen for themselves). He was diagnosed

with failure to thrive. The WIC office even told my sister that they

thought my child wasn't loved at home because he had failure to thrive.

Anyway, I finally switched Pediatricians. This makes Doctor number 4

since he was born, he was right about 12 or 13 months at this point. He

is very small, very weak, and cannot even walk or anything. At this

point, I went through that book " what to expect the toddler years " and

found celiac disease. All the symptoms sounded like my son's. Oh, also,

when my son went poo poo in his diaper, it sometimes was white, so he

started to take iron drops at this point. I called the celiac sprue

association, the number I found in the same book, and got all sorts of

information about Celiac disease. They also gave me the number to the

local chapter. I called the local chapter and talked to a woman there

whose son had celiac. THEN, I took my son to the pediatrician and told

her that this is what I thought he had, she gave him a referal to the

gastrointerologist. This is the first specialist he was seeing. Her name

was Dr Prestrige. She met him and examined him and ran many tests on

him, including the blood test for Celiac disease, which they had only

recently come out with. (I can get the name to this blood test if anyone

wants it). The test for celiac came back positive. The Dr told me she

had to do a biopsy to make sure, because 6% of the time, when it is

positive, it is actually a test for the antigens, so 6% of the time, it

is something other than celiac disease. At this point, I had been

relieved to finally have a diagnosis, but, becoming scared when learning

all the things I had to do to rid of celiac in my child's life. My son

had the biopsy shortly after. It was at the children's medical center. I

sat there crying, so scared. All these months, I was so worried he was

going to die he was so sick, and now this was his first time being under

general anestetic. I was still breastfeeding, and I was 2 months from

giving birth to my second child. This was Feb 13, 1995. I started to

pray that it be something simpler than celiac disease, that I didn't

know how I was going to handle cooking complicated celiac free stuff, I

have a hard time with frozen pizza and microwave popcorn. It seemd like

in my son's short life, 15 months old, that it was always touch and go,

like I always had to be scared for his life. THEN, the dr came in and

told me that according to his biopsy, she could see on the scope that he

had ulcers, from the acid, and they he appeared to have Eosinophilic

gastroenteritis. She said she had to wait to get the results from the

lab, but that is what she believed it was. I asked her what we do about

it, she said for now, she wants him to take zantac. I came to her office

at the end of the week, and she confirmed he had EG. She said she wanted

to tube feed him. I did not want this. And, on the zantac, and he was

drinking pediasure only, he was starting to gain weight. She said she

would hold off and see me again in two weeks. If he has gained weight,

she will not tube feed him, otherwise, theyw ould schedule it then. He

started on Periactin. Two weeks later, he had gained weight, and was

eating this pediasure like crazy. I was so happy, I came again 2 weeks

later, and then the doctor told me to wait a couple months to come back,

as I was about to give birth, Meanwhile, he continued to grow and gain

weight. He was diagnosed at 15 months, his sister was born at 17 months,

Just before he turned 3 years old, they repeated the blood tests and

biopsy and said he was fine! Also, I should add that if he gets sick, he

would have breathing problems. But, he had the chicken pox a few months

ago, and he hardly noticed, no breathing problems, and he didn't even

really scratch, even though he was covered in spots! I want to say that

when I took him to a different specialist, and talked to a doctor that

exclusively researches Celiac disease for Baylor/ Southwest medical

center, they told me that many times, Celiac or EG are misdiagnosed for

each other. So they tested him again for celiac. I am so amazed at how

well my son is doing now. We even got him off of the pediasure a couple

months after his 3rd bday. He will be 4 Nov 13. His sister has never had

any sign of it. She is 17 months younger, but the same size as him

almost. I am desparate to find out what caused this. He is also speech

delayed. The hospital was negligent when I gave birth, so I want to know

if this was one of the many results. But, my husband was adopted, and we

don't know his birth fathers family, so I worry that maybe it is

genetic. Thank you for explaining to me that this disease takes many

forms and requires many different types of treatments. I think it also

might have different causes.

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>I think that is one of the frustrating things about this disease. What

works

>for some kids does not work for others. My son had taken several

medications

>with no success. For him, the feeding tube followed by an elimination

diet

>have been the key to controlling this disease. Amy's son Bryce has

done great

>using flonase sprayed into the throat yet 's kids had no luck

with

>that treatment. Also, many of the kids on this list have multiple

medical

>problems. I think this further complicates everything.

>

>Any info you could share about your child's treatment would be great.

At what

>age did you start this treatment? Does your son still take the

medications?

>

>Jen

>( 11/7/95, eosinophilic esophagitis, food allergies, asthma)

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