Re: Darla...GI Questions..../Kris

[Guest guest]

Kris, Hello! So sorry I hadn't gotten back to you!

As you can imagine, I've been extremely busy and sick myself. Feeling better now, thankfully. The Mayo trip coupled with an Ohio trip just days before our Mayo trip really got me down. It was actually worse on me than my boys. That's when my ammonia went up and was soooo ill.

Anyway, I was reading about Cole and his diarrhea.

I am not an expert in the GI department but can tell you for certain that if Cole was malabsorbing, he would NOT be gaining weight and you'd see VERY abnormal stools!

Not sure what all else can cause chronic diarrhea. I think something like a pseudo obstruction can. A child can actually be constipated (caused by a pseudo obstruction) and have bad diarrhea. The loose stool just goes around the hardened stool. Have they done an X ray? Any test for things like Celiac disease, etc??

What is the reason for wanting a G tube placed? To give meds???

Krystena

---- Original Message -----

From: pnkntwins

To: Mito

Sent: Sunday, August 15, 2004 2:49 PM

Subject: Darla...GI Questions....

Hi,Cole is going through this deal where is refusing meds while awake---we have only ever had this problem when he is sick. We are on day 4 of no meds while awake (or very little that we have down his throat). We get are meds compounded--they don't taste too bad--he has actually seemed to like them in the past. I think this is behavioral. Anyway, we are at our wits end. (my husband) is calling Dr. Whiteman to ask him if we can have a G-T placed since we will be at Mayo. We are watching him fall apart this weekend because he is not getting his stuff. He has chronic diarhhea (which Dr. Whiteman has seen at every visit---he always says "that's not O.K."--the only thing a GI doc has done here is put him on Zinc. Dr. Whiteman believes that he has some type of malabsorption issue which he said he drew some labs for (and of course has not called us). Because of the chronic diarrhea he HAS to have his meds every 3 hours (awake and asleep). We give the carnitor 1cc at a time 12 times a day to prevent worse diarrhea. He is also refusing all fluids except some milk---but he is eating fine---so his stomach must not be upset.Here is the questions: what do you think the likelihood is that a GI doc could see us while we are inpatient on such short notice?If they see him---what is the likelihood that they will consent to a G-T?If they see us and consent do you think they could just extend our stay and place it right away?I know you have discussed the GI docs before...I don't remember who is it that we would want to see?We have done everything possible to avoid this----but he is losing ground just over the last 3 days (muscle tone worse, behavior awful, dystonia increasing).The only thing that is saving him right now is that he is getting meds while asleep (my boys drink from sippies in their sleep and stay asleep during the drink--usually). He is now sleeping worse because he isn't getting his daytime meds.I hope Dr. Whiteman answers 's panic call tomorrow---sometimes he is not so good at that. Any hints on getting a call back?KrisPlease contact mito-owner with any problems or questions.