Mito | Imamother

noidea

Wed, Jul 03 2019, 4:01 am

Our child has many mitocondrial symptoms but no diagnosis of it despite a lot of tests so a lot of confusion. Supplements such as coq10 have not helped anything.
Any ideas and advice from someone with experience with this condition or similar would be appreciated!

noidea

Wed, Jul 03 2019, 10:07 am

amother [ Tan ] wrote:

Have you been working with a geneticist?

Yes done every test out there

amother

Lavender

Wed, Jul 03 2019, 10:52 am

I’m so sorry you’re going through this! I have a Mito kid, so lots of experience. Can you share more about the symptoms you’re seeing and what tests you’ve already done?

noidea

Wed, Jul 03 2019, 1:04 pm

amother [ Lavender ] wrote:

I’m so sorry you’re going through this! I have a Mito kid, so lots of experience. Can you share more about the symptoms you’re seeing and what tests you’ve already done?

Please pm me

happyone

Thu, Jul 04 2019, 7:10 am

Todays day theres a mitochondrial MTDNA panel which helps identify 100s of mitochondrial diseases. years ago only def dx was fresh muscle biopsy. there are several centers in both Akron, Cleveland, Pittsburg that specialize in mito. Dr.Wendy Chung in Chony has an interest as well as CHOP. Usually theres evidence in labs, MRI/MRS findings, urine /fatty acids etc..
hatzlocha on this journey.
treating on the mito cocktail cant usually hurt and is worth a shot. Which specialist suggests mito? Docs sometimes lump multi organ unknowns into mito so its important to find a doc who knows what he/she is doing.
UMDF will be helpful in finding a doctor in your area.

amother

Lavender

Thu, Jul 04 2019, 11:22 am

Wow! I’m surprised to see that there are others on here that have mito kids!

amother

Rose

Thu, Jul 04 2019, 2:03 pm

I have a kid who is suspected mito based on sx but no dx. She was seen by Wendy Chung.

noidea

Thu, Jul 04 2019, 6:31 pm

amother [ Rose ] wrote:

I have a kid who is suspected mito based on sx but no dx. She was seen by Wendy Chung.

We had every test available done- full genetics/mris/spinaltap/biopsy etc. and everything comes negative for mito
Was Dr Chung able to really help you without (or before) this diagnosis?

Thank you everyone for your ideas looks like UMDF is the place to check out next

noidea

Thu, Jul 04 2019, 6:54 pm

happyone wrote:

if everything is negative are they searching in other areas?

They've searched for every diagnosis they could think of (we tested everything in NY but based on advice from NY, Cleveland Clinic and a Georgia doctors) - nothing found it remains a mystery !

noidea

Thu, Jul 04 2019, 7:13 pm

happyone wrote:

if everything is negative are they searching in other areas?

checked all areas but all his symptoms point to mito...

amother

Rose

Thu, Jul 04 2019, 8:39 pm

noidea wrote:

No, my child is still more or less undiagnosed. She was seen at the NIH as well. FWIW, we do treat symptoms as they come up but she is not diagnosed or cured in any way.

noidea

Thu, Jul 04 2019, 8:45 pm

⬆ Did dr chung help you much with the symptoms? We tried mito cocktail doesnt seem to have helped anything

amother

Lavender

Thu, Jul 04 2019, 9:18 pm

Mito cocktail should include B1, B2, vitamins C, D and sometimes E, alpha lipoid acid, magnesium glycinate, carnitine and coq. FWIW, our experience is that only certain brands of coq were effective in raising blood levels. Some of these were more effective than others when we introduced them, but it takes 6-12 weeks to really see any changes.

I also found Mr. Yoel Hirsch from dor yesharim to be EXTREME knowledgeable and helpful.

amother

Rose

Thu, Jul 04 2019, 11:48 pm

Can I second Mr. Yoel Hirsch from Dor Yeshorim? Aside for his vast wealth of knowledge, he is literally one of the most incredible human beings I've ever crossed paths with. Please reach out to him.

Re mito cocktail, I did find it somewhat helpful over time. I would absolutely SKIP the alpha lipoic acid component.

amother

Lavender

Thu, Jul 04 2019, 11:59 pm

Amother rose,

Curious why you would recommend skipping the ALA. For my dd the ALA in particular was critical (her Mito dx was linked in part to to a mutation in a gene that encodes for alpha lipoid acid production) and several years worth of liver problems resolved after a year of continuous administration of ALA.

The contents of the Mito cocktail should ideally be tailored to the needs of the patient and a genetic workup by a geneticist trained to look for mutations in genes that encode for mitochondrial function is key.

amother

Rose

Fri, Jul 05 2019, 12:04 am

ALA moves mercury in the body. If the body is not able to excrete it quickly and efficiently, it redeposits it in organs, which can cause damage over time.

happyone

Fri, Jul 05 2019, 2:06 am

or contact chaim jalas. he's brilliant in research and genetic testing with undiagnosed children. Did any geneticist ever run a whole exome genome analysis?