Re: Krystena...GI Questions...

[Guest guest]

Hi there,

Glad you are feeling better, I'm sure feeling so ill was a very

frightening experience.

We want G-T for meds. He has not taken meds while awake since

Thursday. He is also refusing all liquid except some milk. I am

completely sure this is behavioral. He will not take anything that

looks like juice or water (they get their meds in juice). We are

craming as much down him by syringe that we can and he is spitting

most of it out (and acts like we are killing him). His behavior and

muscle tone are both impacted. We tried rewards, punishments,

everything we could think of and nothing is working. He is making us

crazy and Zackary is very upset (he thinks we are hurting him).

The diarrhea thing--average 8-12/day (always). When they get a GI

virus it is nothing to change at least 50 diapers a kid in one day.

21 days in the hospital for IV's for diarrhea in January. I was sick

for one day and so was my husband. He has had x-rays, never showed

anything.

Dr. Whiteman is testing for Celiac again (he has been tested 4 times

for that----so I am sure it is not). He talked about some kind of

malabsorption that is affecting his ability to absorb bivalent

cations?? The boys improved ALOT when manganese was started--so he

thinks that their inability to absorb magnesium, manganese, zinc, and

some other things I can't remember is responsible for some of their

symptoms. Apparently manganese is very related to thiamine's

function which they have a huge need for.

Best wishes,

Kris

> 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?

>

> Kris

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

>