it's been awhile

Submitted by swimmombrandi on Thu, 07/01/2010 - 04:08.

It's been awhile. the blog won't let me post, hope it does today. My little boy has been in and out of the hospital wiht stomach pain. They ran another scope it came back better but not clear of eosinoplic cells. the thing is his pain comes back almost everyday, i give him all his meds but evening and night seem to be the problem time. The dr just says we will have to learn to deal with it and not to ask him how he's feeling so he don't think about it . Wish there was more i could do

Brandi

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Submitted by Kitty on Thu, 07/01/2010 - 19:35.

I'm so sorry to hear he's still in pain and that you've been in and out of hospital. What a nightmare for you all. Do you have other children to look after too?

Sorry they say they can't do much more and he has to learn to live with it. That must be heartbreaking for you to see him in pain. Did they make any dietary or medication changes? do they have any ideas why the nights are worse?

There seems to be so many unanswered questions about EGID.

I wonder if the treatments in the US are different to here?

Anyway, I hope he's more comfortable soon,

Kitty

Submitted by swimmombrandi on Mon, 07/19/2010 - 02:15.

well we were in the hospital again. it was only for 24hrs for dehydation, but the thing is they dont know how he went down so fast. the last scope he had came back better, his colon is clear of eosinophil cells but his small intestance is still inflamed. So the dr said the meds are working. he still has some pain but trying to work through it. the only deit change has been no dairy, we're waiting on a food panel to come back to see if he is allergy to anything else.

Brandi

Submitted by Kitty on Tue, 07/20/2010 - 19:56.

So sorry to hear your son has been in hospital again. It must be so worrying for you. Glad to hear his scope was looking better though. Which medications seem to be working?

How is he coping being dairy free? If you need any recipes then there are lots on this site.

Good luck

Kitty

Submitted by swimmombrandi on Wed, 08/04/2010 - 18:37.

the mediscation Gastcroma is working the best, it's a liquid in small tubes, it coats the bad cells and come out when he stools. still having problems with consitpation, was admitted to the childerns hospital in Kansas City, MO on Monday morning around 2am. His xray was so bad, the Doctors are doing another bowel clean out. It's not working the way they want it to, Also on pain control through iv fluids.

Brandi

Submitted by Anonymous on Thu, 08/05/2010 - 09:26.

Hiya

I have never heard of this drug. I wonder if it's a new one they are trialling for EGID? Not sure if it's used in the UK too?

Sorry your little boy has been in hospital and is in pain. EGID is a horrible illness. Hope he is feeling better soon.

Submitted by swimmombrandi on Mon, 10/11/2010 - 01:13.

Keeron has been doing much better, he hasn't been in the hosital since July. We still have days when he's in pain, but things are better.

Submitted by Kitty on Mon, 10/11/2010 - 11:41.

Hi Brandi,

I am so pleased to hear he is doing a bit better and hasn't been in hospital since July. Do you thihk it's still that new drug that is helping?

I hope he continues to improve,

Kitty