Crystal: Mito and low muscle tone...which lab to do??

[Guest guest]

Here are all the responses to my son's 'low muscle tone email' I sent

out last week. Some Moms mentioned Mito disorder. See my notes below.

Each bullet is a different reply email.

* Carnitor, a prescription amino

Low tone can be a sign of other issues that have traits that mimic

autism. Low tone can be helped by using carnitor, a prescription amino.

* Especially in families that have more than 1 child affected

with

" something " , neurological, metabolic, and mitochondrial issues need to

be checked. Neurologists are usually covered under insurance.

http://www.fodsupport.org/carnitine_therapy.htm

www.umdf.org

www.mitoaction.org

* My non asd child had hypotonia and PT was the best

Intervention to help this. HBOT is known to help with muscle tone, but

isn't cheap! I have read some parents using creatine as a supplement.

Research it though. When you purchase it... it is in the body building

section.... go figure!

* The visit to the neurologists should be covered for hypotonia

based on my health insurance background. It is neurological and could

be beneficial for you to investigate.

* acetyl-l-carnitine and vitamin B1 helped my son.

* My #1 had severely low muscle tone, but now he is almost

Stronger Than I am. I use a general amino acid supplement for him, and

added carnitine, plus mB12 helps also. Adding EFAs plus mito cocktail

also helped. He is still skinny, but no longer weak.

* If there is any chance your child has a mito disorder, stay

away

From HBOT. It can be extremely dangerous for kids with mito.

* Coincidentally, I am also " B. " , but not the same as the

one below. In any case, here is an excellent link to learn more.

http://www.kathleensworld.com/mitochon.html

* My 6 yr. old son Nick has reponded well to creatine for low

muscle tone. I get it from kirkman labs. They are 500mg capsules, and

I give him 1/2 cap. in am and 1/2 cap. with lunch. Dr. Usman said we

could go up to 1000 mg a day, but I haven't tried that. Prior to

creatine he would write and color so lightly because he didn't seem to

have the strength in his arm/hand. I can honestly say I noticed a big

difference within a day!!! And his private OT noticed right away as

well!!

* I am not , but I determined that my son had mito issues

Because he did not tolerate any EFAs, they caused him to become mean and

aggressive. And giving milk with enzymes worked well except it caused

excessive ear wax. Both of those problems were eliminated when I

addressed his mito issues. I wrote the details here

http://www.danasview.net/mar05.htm

Mito Cocktail as follows [i use lower doses of most of these, no more

than USRDA]:

CoQ10

Carnitine

Vitamin E

B50 [my lower doses above]

Vitamin C

Zinc

Selenium

* You got some great replies already, but wanted to kick in that

sometimes this can be helped by more protein in the diet along with

protease enzymes to digest the protein, in general. Low muscle tone can

be a symptom of protein deficiency.

* My son had super low muscle tone and it turned out to be that

his carnitine levels were rock bottom. Request to have his level

tested. It is a blood test. Good luck!

* The neurologist that Riley saw was Dr. Ted Guarino 408-356-7147

located on 14901 National Ave. #202. Very good. Came recommended by the

old pediatrician. Christie also speaks very highly of him. I don't know

if you need your pediatrician 's referral or not. We had one, but I

don't know if that is necessary.

* My son is 3-3/4 and has mild hypotonia. In addition to OT, we

do hippotherapy, which we feel has been very beneficial. It is

sometimes referred to as therapeutic horseback riding, but that is

actually something different. It is basically therapy using the

horse as a tool. He rides without a saddle in many positions:

forward, backward sidways left and right, even on his belly. There is a

lot of stopping and starting and changing directions, which I think is

when the muscles receive the most input. It may be covered by

insurance, depending on who does it. Our is done by a PT and billed as

such. It is $70/session here in NJ.

Also, " The Out-of-Sync Child Has Fun " has lots of fun stuff to do at

home. Look under vestibular and proprioceptive senses sections.

You might also want to most your question on the

group, as mild hypotonia is a soft sign of apraxia and there

should be lots of people with info.

Re: Please respond this morning for blood lab...

Carnitine & Mito

wait what mito disorder? you can tell something from one of the great

plains tests? can someone tell me what to look for and what it is

called and what you treat with .

thanks

crystal

Christy Carrasquilla <ccarrasquilla@...> wrote:

We are drawing blood today at 1:30 and I need to get back to the

Pediatrician this morning on which one to do...

1. Do I do the blood test for Carnitine through Great Plains? The only

section we can find is the amino acid. Or do I have the Pediatrician

order a Carnitine lab through the regular lab down the street. I'm

doing his blood today at 1:30 and need to tell the Pediatrician which

one to order this morning

2. For the Mito disorder, do I get that info from the Krebs part on the

OAT (urine), or is that a blood draw too? What lab, which section?

THANK YOU, THANK YOU!!!