i need help

Submitted by swimmombrandi on Tue, 05/04/2010 - 14:14.

My little boy is 6. He has EGE, we have know about for 2 months. He has been in the hospital once since we learned about his EGE. This past weekend was really rough, was in the ER on Sunday, they gave him a enamia to help pass stool. Well he isnt getting any better, his GI DR. upped is gastorcoma yesterday but he is still in pain. on a scale of 1-10 his pain level has been no lower then a 5 and now is at a 8. Please help, is this what I have to live with, My little boy in so much pain. The Gi clinic just called, so now i have a 2 hr dive to the Dr office, please pray they help my little guy.

Brandi

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Submitted by Kitty on Wed, 05/05/2010 - 12:53.

Hi Brandi

I feel so sad reading your blog. It's so unfair that your son is in such pain. My boys used to be in terrible pain and it was heartbreaking. You just want to help but don't know how.

Please forgive my ignorance - what is gastorcoma? Is your son on an exclusion diet?

How did it go at the doctors office? Did they have any suggestions?

Are you living in the US?

I really hope you get some help,

Kitty

Submitted by swimmombrandi on Wed, 05/05/2010 - 22:28.

HI Kitty

gastrocrom is a med, its a form of cromolyn sodium. We was at the Drs yesterday, they increased 2 of his meds and add steriods for 5 days. He is still in pain today, I'm about to pull my hair out. I want him to go back to school, but dont know if I should send him. I dont want him using his disorder to miss school. On the diet the only thing we know of right now is dairy, so he has a dairy free diet but thats not helping. I do live in the US, the state of Missouri. We have a great childerns hopsital in Kansas City , its a 1 1/2 drive for us. I hope he can go to school tomorrow, so I can go back to work.

Brandi

Submitted by Kitty on Thu, 05/06/2010 - 18:50.

Hiya

I hope the steroids work for him. Does he get diarhoea or vomiting as well as pain? it's hard when they miss school. My son doesn't usually miss much school but he's been off 3 days in the last 10days complaining of stomach pain. Like you, I never know whether to send him or not.

In the UK, they often put kids straight onto an exclusion diet - the most common of which are avoiding dairy, soya, and egg (and sometimes wheat/gluten). do you think your son may have problems with some of these other common triggers? Do you have a dietician that can guide you on this?

I hope he is well enough for school tomorrow.

Take care,

Kitty

Submitted by swimmombrandi on Fri, 05/07/2010 - 01:30.

Well we didnt make to school. Keeron stared vomitting last night, his pain got worse. After talking to the Dr. on the phone, they admitted him. So know we are here at the hosptial, on IV fluids and no food my mouth. Will see the Drs agian in the morning.

Brandi

Submitted by helenb8man on Fri, 05/07/2010 - 08:47.

Hi Brandi

Sorry you've ended up in hospital but hopefully they can work out a plan to try and improve things for you all. I'd have a long list of questions for them and if they can't answer them ask if you can have referral to a specialist who can.

Thinking of you

Helen

Submitted by Kitty on Fri, 05/07/2010 - 10:35.

Hi Brandi

I'm so sorry to hear he is now in hospital. Have they told you what their plan is?

Has he ever had scopes done?

I hope he's well enough to come home soon and that they have a plan for his care.

Kitty

Submitted by swimmombrandi on Fri, 05/07/2010 - 17:15.

the plan is to continue meds and a clear liquid diet . He has the best Drs in the state of Missouri, really no where else to go. I just ask why the flare ups keep happening, I was told 70% of kids do well on meds and the othe 30% still continue to have flare ups, and it could be from outdoor allergys or from something in food. so we just sit and follow the drs order, Bowel rest and meds.

Brandi

Submitted by swimmombrandi on Sat, 05/08/2010 - 00:22.

He had his scope back in March, that how they found the EGE

Submitted by Kitty on Wed, 05/12/2010 - 18:54.

Hi Brandi

I hope the bowel rest works and that you get out of hospital soon.

Kitty