update

[Guest guest]

Hello everyone,

Just to let you know what a productive week that we have

had! I have been in communication with the doc's at Mt. Sinai Hospital

in New York City! YEAHHHH! They are going to meet with in June.

It is a long time away, so they are currently working with me on ways

that I can try to keep Matt's spirits high and perhaps stabilize him or

even gain some weight. NY's findings agree with our GI's diag. with the

eos. entropothy. What is confusing for him is the low grade fevers that

Matt will continually run, with the fevers spiking sometimes a couple of

nights a week. He believes that there is something else inside of Matt

causing complications. Duhh, it is why we are referred to NY in the

first place. Currently, we are taking a 5 day diet, including labels and

amounts. Mt. Sinai hopes to rule out anything that we may be

accidentally giving Matt which has been restricted from his diet. After

reviewing his diet, we may have to go to NY to meet in the clinic and

meet with the dietitian. We are all hoping that any communication can be

done through our GI.

Phyllis, the NY doc wanted to know if Matt is on any supplemental

formula. I let him know that we had questioned about using Elecare and

he would like to wait until he reviews Matt's diet before he suggests

using the Elecare. He said that it would be hard for an 8 year old to

take it after eating for 8 years. He said that Matt would not be able to

take solid food. (We were under the impression from earlier

conversations, that you can mix the two) He also said that the Elecare

tastes like battery acid, yummy.

I see a lot of people mentioning weight in pounds. I was wondering

if I give Matt's weight, if I could have some comparisons. I only have

his age group and his brothers to compare him to but no one who also has

experience with this illness. I want to make sure that I am not

overreacting. 's DOB is 7-31-91. He is currently weighing in at

43.5 and 47 inches. Thanks for any input.

Jacque.