Keto Diet / C. Chee CHOP / PDH

[Guest guest]

I have not read the mito post in months (busy with 's IEP, her 3rd

B-day, stomach flu, MD appts, and the Holidays & work (32 hrs/week) but I

take to CHOP and she is on the keto diet, if anyone has any questions

they can e-mail me at work:

amy_porter@...

Best Regards,

Amy (mom to , 3 DX with PDH)

help again

>

>Hello everyone, I have more med questions. I started on ACTH

>yesterday. He has taken it previously so we started at 40 units. Along

>with this, he takes Topomax, Vigabitrin, Piracetam, and a small amt of

>Klonopin. I dont think he needs to be on all of this med, so this am I cut

>out his 1/4 tab of Klonopin. Tonight when he woke up, he did his normal

>spasm as he does every time he wakes up but then he added twitching in both

>hand and curled his toes and he has done this for about 30 min. My

question

>is: What caused it? Adding the ACTH? Decreasing the Klonopin? A mixture

>of all the meds? His body just getting use to all of this? Thanks for the

>input. PS. I contacted Chee at CHOP about the keto diet. Wish us

>luck. Melinda, mom to 11 months, complex 1 mito, seizures,

infantile

>spasms.

>

>

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affected by mitochondrial disease.

>