Re: I'm stuck... need thoughts?!

[Guest guest]

-Anne-

Austen has the same problem. Our neuro suggested upping his carnitine

dose. We have found this to be helpful, although you'll have to put

up with the fishy smell.

Gwen

Austen GA2 age 7

-- In Mito , AReckling@a... wrote:

> Hi guys,

>

> I'm sorry if I haven't responded lately to my e-mail. I was totally

> overwhelmed last week with the implications of Asher's mito

diagnosis and could not

> handle reading anything even remotely connected to it. Anyhow, I

know I've

> written about this before but I need your thoughts again. Sorry If

I'm being

> repetitive. This situation just never leaves us!

>

> Asher has had a hx of constipation for at least 2 of his 3 years.

How much of

> it is witholding and how much of it is due to his dysmotility

(which he at

> least has some documented intestinal dysmotility) we don't know....

we've used

> Milk of Magnesia, Mineral Oil, Miralax, and combined these all with

Benefiber.

> And Asher still with all of these does not go for up to one week -

and, then,

> he goes b/c of a suppository, sometimes two nights in a row before

he has a

> bm. They are always runny which causes him to gag if it gets on his

legs. We now

> have him on 2 Tablespoons of Mineral Oil in the morning and 1

Tablespoons at

> night plus Benefiber. This worked for a couple days and now he's

not going,

> but he's having considerable leakage or " streaks " . The problem with

this is his

> bottom is so red and burny looking. I don't know what to do as it

seems we

> have exhausted all possibilities. His ped gastro who has been very

very hesitant

> about Reglan (b/c of serious neuro side effects in some kids) is

starting to

> talk about needing to use that. I can't stand the idea b/c, right

now, even

> with the mito dx, he's not having any " brain " symptoms (i.e. no

seizures, no

> intellectual delay,etc.) - so I don't want to cause any by trying a

new drug. I

> just can't imagine having to stick suppositories up my son for the

next 3 months

> until we can get to Dr. Korson (mito expert in Boston) and see what

he has to

> say...

>

> Any ideas???? I know you all have mentioned having a full workup

for GI

> dysmotility... what can it tell us and is there anything different

they can offer

> us in terms of treatment? I guess that's the main thing for me. I

don't want to

> put him through any testing (even the easy kind) if there are no

different

> treatments available.

>

> Anne R

> - mom to Asher (3, Oxphos Defect - Complex III and possible

complex I defect)

[Guest guest]

Anne,

I was wondering were are you located. We are in Saratoga, NY and our

dr. suggested possibly seeing dr. korsen if we couldnt get into NYC

[Guest guest]

Ann

had many yrs. of bowel problems. We use Reglan and it has

helped her tremendously! She is on reglan and miralax. If she gets a

little backed up we increased the miralax until she goes. Is he

getting plenty of fluid? With the fiber you have to get fluid and

alot of it or it causes constipation too. It can really get bound up

inside like cement. We use to have to do suppositories and enemas 2-

3 times a weeka nd now we haven't had to for over a yr! (Knock on

wood!)

Good luck, Dawn