Krystena- G-tube/whiteman/etc.

[Guest guest]

I was wondering about the malabsorption issues and how much

alike this can be to dumping syndrome. Zipporrah has had diarrhea

since birth and it has gotten worse since the g-tube feedings. She

of course had to have a g-tube so no regrets there, but we are still

wondering how to control the diarrhea in her. She has this

black/green liquidy BM that is horrible smelling. In fact, her

onsies all remain smelly even after washing them! I have NEVER

smelled anything like it before. I am wondering how much of a

similarity my daughter is to what yours have experienced in this

area. Can you tell me some more of the symptoms your son has had in

this area and how they came to discover the problem? Asenath also

has had the same issue minus the color/smell and we have never been

able to figure out why they have the chronic diarrhea. I may talk to

the GI about testing for the pancreatic insufficiency to see if she

thinks it may be an issue for Zipporrah.

Darla

> > First of all, I would suggest talking with Sara at 507-284-

> 8208 as she is probably the one who can talk with Dr. Whiteman

> easiest. If she isn't available ask for Tabitha. Have your

husband

> explain the severity and the worsening of his condition and if

there

> is any possibility of getting the g-tube placed while you are

there.

> We never went through a GI doc to get Zipporrah's tube placed,

just

> Dr. Whiteman recommending the necessity of the placement to Dr.

Moir

> an excellent pediatric surgeon-who placed both of my girls' tubes-

in

> fact he is the one who is willing to place the mic-key button

> immediately over the long extension tubing for the first 6

weeks!)

> If a GI doc is needed I HIGHLY recommend Dr. Grothe (our GI) and

have

> also heard good things about Dr. El Youseff as well. We steer

clear

> of Dr. Freese due to several run ins with her as well as hearing

> other peoples' bad experiences with her. Some of the GI docs

place

> the tubes themselves, but I prefer using Dr. Moir. He did an

> excellent job on both of my two girls. And I absolutely loved

having

> the mic-key button right off the bat. Staying on to have it

placed

> is definitely a possibility as we originally was to stay an extra

> couple of days to have Asenath's placed (until Dr. Freese thought

it

> unnecessary!), so we know it does happen that way sometimes.

> > Another issue I was going to mention is about the chronic

> diarrhea. Zipporrah has the same issue and for her it was due to

a

> dumping syndrome. The stomach dumps the food too quickly into

the

> bowels and does not absorb the food. Her diarrhea tends to be a

very

> dark black/green color with a horrible smell and also causes

sweating

> episodes along with other dumping symptoms. Has your son had a

> gastric emptying scan done??? If not, it may be time. Chronic

> diarrhea can be caused by several issues and sometimes cannot be

> diagnosed unfortunately. Asenath had it from birth until last

fall

> when she began steroids and now that the steroids are being

lowered

> it is returning. We have no explanation for her diarrhea. Also,

I

> know that the Carnitine is an attempt to help absorption, but

also

> know that it can cause diarrhea too so it is wise to let Dr.

Whiteman

> know the downward spiral you are seeing. He was talking to me

about

> a child he treats with higher doses of carnitor for absorption

help

> (maybe you) and actually increase Zipporrah's dose too. I think

it

> is wise to keep him well informed of the ups and downs of how it

is

> going, as that's the only way he can help. Hopefully, if your

hubby

> expresses the urgency of the issue, Dr. Whiteman will call back

> quickly. If he cannot, maybe one of his nurses or staff can

relay a

> message from him to you. I hope you are able to get some help.

I

> know how stressful it is to not be able to get meds down. Before

> Asenath had her tube we were having such trouble getting hers

down

> consistently. Now that she is on ten meds (some up to three

times a

> day) I can't imagine her not having a g-tube. But on top of

that,

> she eats only a couple bites of her meal and sometimes only a

couple

> bites per day! Even with steroids she still won't eat, and we

were

> told it usually makes people eat tons!

> > Sorry this is so long. Let me know if there is anything

> further I can help you with and let me know if you stay longer

then

> we can meet.

> >

> > Darla

> > 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

owner -

> owner owner >> with any

problems or questions.

> >