Kim...Re: Darla...GI Questions....

[Guest guest]

Hi,

Thanks for the suggestion and thoughts. He is out of town! Any

ideas--I justed posted this to Darla too. I doubt any of his

collegues would take responsibility for this one. The poor kid just

graduated from therapy 2 months ago, I hate to think he might need it

again.

Kris

> Any hints on getting a call back?

>

> Kris,

>

> Maybe you could call today and see if he's the doc on call for the

weekend.

> If so, I am sure he would call you back. I'm sorry to hear about

the

> difficulties you are having right now with Cole. Good luck on your

trip to

> Mayo. I hope you are able to get everything taken care of in one

trip.

>

> Kim - Mom to and Lindsey

> > 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.

> >