Re: Re: Mayo visit-Kris

[Guest guest]

Hi Kris,

Thanks for your e-mail! The girls are on 2.5mg of NADH twice daily. As far as

knowing much about it, I am afraid I do not. Our neuro put the girls on it

when he started them on the " cocktail " back in 2002. We also had issues with

the girls on Niacain (Niacin flushing.) Lowering them from 30mg to 25mg took

care of that issue. They still have flushing sometimes but, not very often.

I am sure I won't hear anything from Dr. Whiteman until our next visit in

three months. I have a call into our neuro to address the latest " episodes. "

When you said Cole was doing the eye thing when " he was just a mess " what do

you mean? What was he experiencing at that time?

Thanks again for your e-mail!

Kim - Mom to and Lindsey

>

> Hi Kim,

>

> Sorry to hear the girls are having difficulties and understand your

> frustration. Couple things---I remember Cole doing the eye thing last

> summer when he was just a mess (hadn't been to Mayo yet)---it went

> away and we have not seen it again. Also wanted to let you know that

> my twins are similar (biopsies not matching). Cole's skin biopsy

> showed partial complex 1, Zacks did not show anything. Dr. Whiteman

> said the same thing---something else is likely causing the Complex.

> He thought PDH--now of course they think it is something else. Do

> you see Dr. Renaud---she and Dr. Whiteman say they suspect that the

> twins have a neurotransmitter disorder causing the mito symptoms.

> Just when you think you know, another curve ball! We are doing a

> lumbar puncture to see on the 18th of August.

>

> Wanted to also ask you about NADH---we forgot to ask Dr. Whitman

> about it (and he takes FOREVER to call back- also waiting for the

> call about the creatine levels). What does he say about it---niacin

> makes our kids so sick, yet they need it. I was hoping NADH might

> decrease their need for it. Also---how much do you give?

>

> Prayers for better days and some answers for you,

>

> Kris

>

>

>

>

> > Hello friends. We had our visit with Dr. Whiteman yesterday and

> > unfortunately, it was a rather disappointing visit. The twins have

> been

> > having many seizures lately and were completely lethargic at the

> visit. I

> > guess this was good as Dr. Whiteman got to see them at a low

> point. He said

> > that their muscles were very floppy. I also brought up the issues

> has

> > been having and he wondered if she is experiencing this due to the

> number of

> > seizures she is having and all of the electrical activity going on

> in her

> > brain. He also agreed that an MRI/MRS would be a good idea so I am

> to follow

> > up with our neuro. On a good note, the labs that were drawn last

> time we were

> > there were completely normal. He drew them all again since they

> are in a rut

> > to see if there were any changes. If not, he said he has

> everything under

> > control metabolically, so we just need to get control of their

> neurologic

> > issues.

> >

> > He is also testing the girls for creatine deficiency. He is

> wondering if they

> > have something else going on in addition to their complex I

> defect. Lindsey's

> > skin biopsy came back completely normal on Complex I activity which

> makes him

> > wonder if something else is going on. Yet, her frozen muscle

> biopsy came back

> > positive for Complex I and IV defects. Why does this disease have

> to be so

> > complicated and hard to understand???

> >

> > Here's a new one the girls are throwing at us...please let me know

> if any of

> > your kiddos experience this. They have started closing their eyes

> and their

> > eyes flutter very quickly. This happens a lot while they are

> eating. It's

> > like they pick up their food, their eyes close and start fluttering

> and they

> > do this the whole time they are chewing. They also do this

> throughout the day

> > and I often clap my hands to get their attention and say their name

> and they

> > snap out of it. So my question is, would this be a seizure since I

> can get

> > their attention? Dr. Whiteman said to call them " spells. " Does

> anyone have

> > any ideas?

> >

> > Thanks for listening

> > Kim - Mom to and Lindsey (2 1/2)

>

>

>

>

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

>