Fw: update Miriam

July 10, 1999

Hi we are finally home from the hospital. Miriam is now able to eat (with

steroids) chicken, rice (and their products), squash,and apples. They also took

her completly off the vivanex and the NGtube which she was so happy about it.

Isent her to camp today and she was so excited that she will have a sandwich

like everyone else( I sent her with rice cakes with applesauce spread on it and

an apple cut up) she also said to me I'm going without the tube and noone will

laugh or make fun of me. I am just praying that when they take her off the

steroids in a few weeks that she will continue to be able to eat.

A week from this Sunday the 18 th of July I will be taking my son to Tel Aviv

to a hospital who is supposed to be experienced in swallowing and feeding

problems. I have to try and get the insurance to cover it (next weeks job) .I

gave Yisroel a cracker earlier this week and he started that night with coughing

and now has asthma all week, I don't know if he is wheezing b/c he is allergic

to wheat or because he asperated it like Dr. Sampson thinks hopefully we will

get answers soon.

My 7 yearold was just evaluated and I was told that she is in extreme emotional

distress which is causing her learning disablities. Another thing to go on my

list of things to work on Well I guess I can't say I'll be bored. Miriam starts

speech therapy this coming week as well.

Be well

Shana (mom to Miriam, 3 1/2 EG food allergies, Yisroel 2 food allergies,asthma,

swallowing problem, Tehilla 7 emotionally distresses due to all the medical

problems going on in the house.)

July 10, 1999

Shana -

Wow! You sure have your hands full! (And I thought my house was chaotic LOL!)

If Miriam can tolerate rice products, there is a a lot out there. We are trying

my kids again on very very small amounts of rice products. I have begun to

think they may be able to tolerate food proteins in only very small amounts

(they have symptoms if we don't limit). It will be interesting to see.

Apples are our next attempt too.

That is a fairly safe diet for her; she may be able to tolerate that even off

steroids, or on a super low-dose. Our new peds GI told me last week that he

wants to try my kids (again) on low dose steroids or some of the

immunosuppressive drugs to see if we can let them eat. My husband and I are

very very wary of this, however. We don't want our kids to be an experimental

platform for anyone and we have found something that works. If we can find a

few foods that can eat (even if it is in tiny amounts) to help them socially, I

think we will stick with the tubes and the elemental diet. For my 11/yo, his

disease has progressed dramatically and his esophageal strictures are now back

and unresponsive. For him, the tube is no longer an option for therapy but a

definitive need for nutrition.

Good luck to you! Keep us updated!!

steph

[eosinophilic gastroenteritis] Fw: update Miriam