Monday, September 8, 2008

Eosinophilic Gastroenteritis - Day 2

Elijah was born by a scheduled c-section and it did not take long for me to wonder if something was wrong with him. He seemed sick from the get go. I was trying to breast feeding him, but it wasn't agreeing with him. He broke out in a full body rash and clawed his face up. He dug skin out on his cheeks. Poor baby looked so bad.

Elijah was returned to the hospital with jaundice shortly after we got home from being released.
While there we determined the breast milk was making him sick. So we tried formula and that wasn't any better. The first month of his life was very hard.

Elijah screamed 12 - 14 hours straight. He never slept no more then 2 hours at a time. He never had a solid bm, it was always green water with mucus. Very gross and smelled horrible.

I took him back in to the doctor and told her I thought something was wrong with him. She decided he had colic and told me it would pass around 3 months of age. I was watching the calendar. The poor baby never stopped screaming.

At 3 months old he was still screaming non stop so I took him in and they determined Elijah had reflux. He was put on reflux meds and they made things worse. We tried different reflux meds, but nothing helped, they all really made him worse. He threw up all the time and still only had green water bm and never a solid bm. During this time we tried every formula on the market, even the ones I considered to be pricey.

At around 4 months old I had went in to see my doctor. I was so run down and about to drop. I told him something was wrong with the baby. So he talked to me about it and he got us an appointment with a GI doctor in another town.

By the time of our appointment date at around 5 months, Elijah was really sick. The doctor and nurse were surprised at how much he cried. I told them he never stopped, but they probably didn't full understand that since they only saw him for a couple of hours.

Test were set up for Elijah that were supposed to be outpatient. The PH probe showed horrible reflux and the upper GI scoped showed him full of eosinophils. All I remember is the doctor coming out saying Elijah could not go home. He ordered a new formula called Neocate.
I missed all the information about eosinophils all I knew was we were getting a new formula and this was going to be the magic formula that he could take.

Elijah was diagnosed with eosinophlic esophagitis, eosinophilic gastroenteritis and eosinophilic colitis. Elijah had eosinophils from one end to the other.
http://www.apfed.org/egid.htm

At the time I didn't catch much of the diagnosis, I was just thinking this formula was going to make it all good.

After a few days Elijah began to show such improvement. After a week he had his first solid bm at nearly 6 months old. The first time it was green water! The hospital staff couldn't believe what a change he had made from screaming to sleeping. It was like having a new baby.

The doctor would not let us leave the hospital until we had a supply of this high dollar formula.
Neocate was $40 a can. Insurance would not cover the formula that you could only get with a prescription at a pharmacy. Once we got up a supply of this formula we were allowed to go home.

It was like bringing home a different baby. He was drinking his bottles and he was sleeping and he wasn't screaming 12 - 14 hours straight.

All was good for a few months until the doctor wanted us to start him on baby food. The night mare started all over again!

1 comment:

DustBunniesAndBooks said...

Wow, I cannot even imagine. (((hugs))) Thanks for posting for Invisible Illness week!

--Celia from FIAR