[mito] I'm stuck... need thoughts?!

[Guest guest]

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,

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

I can't remember if Asher is on any mito supplements yet. CoQ10 worked

wonders for Emilie's GI problems.

I have also heard of a lot of kids who took Miralax for constipation with

good results. It requires a prescription, btw.

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

Magnesium supplements and Bethanecol combo works for us....Put some lotrimin on his bum- sounds like he has a definite yeast issue. Cindy-GA

[mito] I'm stuck... need thoughts?!

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) Please contact mito-owner with any problems or questions.

[Guest guest]

I don't really know if this will be of any help to you, because you have probally already tried it. Have you put him on a high fiber diet? Gracie constanly is getting very hard stools (but she is not constipated as she goes every day.) We have her on a high complex carb, and fiber diet. It helps some. Also I do not know where you would go to look, but I have read in many places that people can become dependant on suppositories if used too much. It is one of those Catch 22 things, you really need them, but then you are stuck in the trap. I would call the GI you are taking him too, express your concerns about the Reglan and ask if there is anything else you have not tried yet. Best wishes.