Comments on Stop. Think. Autism.: Does My Autistic Child Have Mito?

What tests did your child have done to rule out a ...

2009-12-19T06:18:25.392-08:00

What tests did your child have done to rule out a mitochondrial disorder? My son is believed to have a mild mitochondrial disorder even though his skin biopsy came back 'normal'. His organic acids levels and developmental delay led our doctor to 'diagnose' him with this disorder our son with this disorder. We have started the search again to pinpoint what kind of mitochondrial disorder. We are going to have a muscle biopsy done when he has his MRI re-done after the new year.
We also had prader=willi and others done too. My son is 18 months old.
Thanks for sharing your story...
Holly

Anon,Yes, that's been one of the major points I'm ...

2008-04-26T15:21:00.000-07:00

Anon,

Yes, that's been one of the major points I'm trying to let everyone know: mito testing is invasive, painful, expensive, and it must be done properly. If these lawyers send all their patients out to get biopsies, I doubt all will seek out the 2-3 experts in the country, or at least the other 4-5 hospitals that do the fresh biopsies and test properly. This can lead to all sorts of issues & inaccurate results even.

It's been a couple of years, and my daughter's scar looks almost the same as it did post-op. It's large on her thigh. And the procedure itself was scary--she had to be asleep, they did a spinal tap, urine cath, biopsy, and took blood as well. I think a lot of these parents thinks it's a simple blood test. I thank you for passing that information along.

As far as the cost, our appointment with a mito expert (for mito testing, as well as several other genetic testings) was around $32,000 total. THANKFULLY, our insurance paid quite a bit, and the doctor agreed to what they offered. We ended up having to pay only $250 (plus travel expenses...which seeing as we had to fly & get a hotel, etc. was still very costly).

To go through all of that, just because some lawyer who wants to make a buck is recommending it, without any medical reasons, drives me nuts. Now, granted, some of the kids in these cases may have abnormal blood tests, which may (upon physician recommendation ONLY) warrant further testing, even a biopsy. But, this will most likely be the minority, and the children should only be subjected to such testing IF a doctor (not a lawyer, or David Kirby or an actress, journalist, activist, etc.) is advising it. I share your concern, that people are not quite getting the magnitude of this testing (both on the experience for the child and the cost). I appreciate your speaking out and sharing about it.

THANKS AGAIN!!

I did want to also add for your blog readers that ...

2008-04-25T10:31:00.000-07:00

I did want to also add for your blog readers that are considering testing for mito, is that the only way to get accurate results is to do a fresh muscle biopsy. This involves surgery, stitches and a lifelong scar on their upper thigh. It is very expensive, even the preliminary blood test is expensive, because there are so few labs that can do it. My insurance denied us for years before our Regional Center finally decided to pay for the testing. It's not an easy answer to get.

THANK YOU Anon! Thanks for sharing your experienc...

2008-04-15T17:56:00.000-07:00

THANK YOU Anon! Thanks for sharing your experience, and that of your son. You very clearly made my point, and described the distinction between what your son has and that of autism (w/o mito, and how "mild mito" is not mild by any means). Thanks again!! My best to your family.

I LOVE that you said this:"Typically what we might...

2008-04-14T13:49:00.000-07:00

I LOVE that you said this:

"Typically what we might think of as signs of "mild mito" would actually be more life-affecting than it sounds. Basically, the children I know who are "mildly" affected, they have developmental disabilities, migraines, seizures, failure to thrive and/or feeding difficulties (some have feeding tubes), some have chronic infections, gastrointestinal issues, trouble with temperature regulation, some require at least part-time use of a stroller/wheelchair, symptoms similar to 'mild' CP, etc. Regressions like seen in the case of Hannah Poling can also occur, following fever or illness. If a child has mitochondrial disease and it is affecting their body, even mildly, you will know."

My son has autism and a "mild" mitochondrial disorder, and trust me, they can be classified as anything BUT mild. If your child has a mito disorder it's like going from 0 to 60 mph in 2 seconds flat when they get sick. If the cells get robbed of energy, body and/or brain functions start shutting down. But that can happen with a fever like the one Hannah Poling got after being immunized, it doesn't mean that the immunizations were the cause. I have 5 boys all with the same mito disorder and only one with autism.

Grateful for this one SL - a little oasis of reas...

2008-03-13T09:42:00.000-07:00

Grateful for this one SL - a little oasis of reason in the current tsunami (couldn't resist:) of hysteria.

I've had the same question recently. I bought this...

2008-03-10T17:07:00.000-07:00

I've had the same question recently. I bought this book called Parenting Children with Health Issues. I've also recently checked out this doctor's website and found an Ask Dr.Cline tab on her site that you can ask her anything you want. It's super helpful and could be just a click away from your question!

Very good info. We had our daughter tested. Peop...

2008-03-07T10:42:00.000-08:00

Very good info. We had our daughter tested. People don't realize how many rounds of testing you can do too. There are so many different disorders. We were lucky to find our daughter's chromosome disorder in the first round of testing. We did not do all the mitochondrial tests but a round.

Once again, thanks SL, for this great information....

2008-03-07T10:23:00.000-08:00

Once again, thanks SL, for this great information.

Unfortunately, we're not likely to see this on the nightly national news.

Joe