questions

[Guest guest]

Dawn,

I'm sorry that it has taken me so long to answer your questions. You asked

about 's history with this disease. He did have it from birth, but it

wasn't diagnosed for a long time. We noticed it mostly when we tried

giving him solid foods. We would back off for a while, thinking that he

just wasn't ready, but each time we tried he would get very sick. He

couldn't keep anything that wasn't completely pureed down at all. He

vomited constantly and had obvious stomach pain. He cried constantly every

time we tried to feed him. He started having, what we thought were croup

attacks, but the episodes became more and more frequent. By the time he

was about a year, he would have difficulty breathing every time we fed him.

He had his first ph probe at 14 months. He had the probe in only a couple

of hours when while I was feeding him he had difficulty breathing. He

quickly went into respiratory arrest at the hospital. They had to call a

code and I still relive those moments over and over. The probe was

removed during the excitement and the doctors were always afraid to try

again. In retrospect, he obviously was reacting to what he was eating. He

then had an endoscopy, which showed severe esophagitis, but noone ever said

anything about EG. We tried medications then, but they had no impact

whatsoever on his symptoms.

At home he was still having difficulty breathing every time he ate and we

were constantly rushing him the ER when he would turn blue. Nobody seemed

to know what was going on so the doctors decided that his breathing

difficulties were a result of reflux spilling onto the vocal cords and he

had a Nissen fundoplication done. He did stop vomiting, but he was

retching constantly, had severe stomach pain and was still being

hospitalized for breathing difficulties. He coughed constantly and we were

giving him treatments around the clock. He still needs inhaled steroids

every day for his asthma. He was losing weight and weighed at 18 months

the same as he weighed at 9 months.

At that time, Cisapride was still experimental and we waited months to be

able to try it. did terribly on it. He had severe mood swings and it

didn't help his symptoms. After many doctors and even more theories we

wound up at s Hopkins when was 3 1/2. He was very sick and had

constant stomach pain. He always had positive stools because he was

bleeding from his digestive tract. This was the first time someone

mentioned eosinophilic gastroenteritis. We started on Neocate, which also

was experimental at the time. We eliminated all other foods except for

apple and grape.

The results were absolutely amazing. We always thought was a quiet

little boy who would always be an observer. He blossomed shortly after

starting on Neocate. He started to gain weight and grow and best of all,

for the first time in his life, he seemed to be pain-free. When we went

back to Hopkins 3 months later his eos were gone for the first time ever.

We didn't have any luck with trying to reintroduce foods because he would

seem to become reactive to any food we gave him and his eos returned. He

did well on just the formula for about 4 more years and we have just

recently been able to successfully add some foods into 's diet. He now

is eating 11 foods. He definitely is doing MUCH better now that he's

older. I would guess that he is starting to outgrow some of his symptoms.

I'm sorry this is so long, but it was as brief as I could possibly be to

answer your questions. I hope this helps.

Suzanne