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what am i seeing (mito/metabolic moms?)

post #1 of 6
Thread Starter 

ds is on the spectrum, age 5.5.  i've posted over the years here about his various issues.  serious seizure disorder that has been fairly refractory to medication.  low tone, delayed all around and immune deficiency.

 

with intensive ABA therapy, he has made amazing progress in every way, except gross motor.  he is doing very well academically, despite the serious expressive language delay.

 

we recently started him on MAD (modified atkins diet for seizures). it's had a seriously positive effect on him in reducing seizures significantly.  he does even better in a total fasting state.  his body likes to be in ketosis and his body seems to love high fat.  he looks SO healthy these days.  it seems that carbs are not his friend at all.

 

we've done a lot of testing over the years and genetic testing came back with nothing and the extensive OAT only showed a slightly elevated glycine level.  he takes TMG and i think that may be what gave that slightly elevated level.

 

he has also done very well with biomedical support and IVIG.

 

we aren't really willing to put him through too much more invasive testing as he has had to deal with a lot of medical stuff at his young age and i am not convinced that a diagnosis could be found, and if one was, i'm not sure it would impact the treatment we are giving him.  i should also note that he has never regressed or been hospitalized.

 

i've read and read and read about various mitochondrial disorders and metabolic disorders.  nothing seems to fit him.  i would just like to know how to support him even more.  is it possible that he really does just have mito dysfunction (what his doctors seem to think)?  can you give me some advice on how to give more support?  he does so well with every researched intervention we give him.

 

thanks for any thoughts/advice!

post #2 of 6

Has Angelman Syndrome been ruled out? Some of the things you describe seem similar, but it could be coincidence. http://www.angelman.org/healthcare-professionals/epilepsy-and-its-treatment-for-providers/  I do not know about mitochondrial/metabolic disorders, so I will defer to others that are more expert.  

post #3 of 6
Thread Starter 
Yes. Angelman had been ruled out.
post #4 of 6
Thread Starter 
I also wanted to add that given the choice, he would only eat carbs -he craves them but they clearly do bad things to him. He is ok on 20-30 grams/day.
post #5 of 6

Can I ask what type of biomedical you have done?  My youngest had some mito issues and it was brought up several times that they could be metabolic as well.  He also responds well to biomedical and we've had success with several treatments.  So much so that we haven't sought out additional testing.  You mentioned he doesn't do well with carbs but he craves them....have you tested for candida?  I know that 2 of my 3 do.not.grow when their candida flares.  It went undiagnosed for years in them both and caused so many issues.  Also, as we dove in to our son's mito issues one of his doctors suggested we begin to target free radicals.  We've gone with several different methods to do that and it has helped him SO much.  He went from laying on the floor exhausted 10 hours a day to be being a full on lively 3 year old again.  The free radicals were really holding his system and cell function back.  I'm fairly new here so please excuse me if these are really simple questions that you are really far past where you are with your son.  I'd be happy to share the supplements and biomed stuff we did (some are specific to mito restore and have been very effective), not sure if posting links to the products is allowed here but let me know if you want more info =)

post #6 of 6
Thread Starter 

nobody? am i totally off track here with my line of thinking? 

 

i guess the other answer could be that we are just lucky he is responding so this diet so well.

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