Re: Kris- Whiteman is on vacation...

[Guest guest]

Sorry to hear he's out of town for you, but he definitely needed

a break! He is such a caring man who works so hard for every one of

his patients! We just love the man. We give him credit for saving

Asenath's life, and honestly he deserves the honor as he was the

first one to find ANYTHING to treat medically when she was at her

worst!

As for the team, I would assume this would be the docs and

residents on the floor who will care for your son while inpatient.

Depending on who you get, will determine the level of care in the GI

issues you will get. Dr. El Youseff is on call at the hospital next

week and Dr. Grother is on call next week. Last week it was Dr.

Freese. I know this only because we were figuring out when to do

Asenath's scope as an inpatient. Dr. Grother " may " be on call there

at the last part of the week, but I think not until the next Monday

when we are there.

Did Dr. Whiteman give you a reason NOT to try immodium? He

doesn't know Zipporrah is on it. We just began it about 1 1/2 weeks

ago. Hope it doesn't have negative side effects for mito kids.

What floor will you be on? We are usually put on the third

floor in the Francis building. Hope all goes well. I will check for

you.

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.

> > >