Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

3/6/08

Strange--Parents Don't Mention Mito!

FYI...my laptop is grumpy today, so I'm unable to paste anything.  Once I figure it out, I'll paste parts of the article.  Click on the title above to go to the article.  Thanks!


LATEST UPDATE:  HANNAH & HER FAMILY WILL BE ON LARRY KING LIVE TONIGHT!!!!!

Alison Young, for The Atlanta Journal-Constitution reveals the "CHILD" from the "concession case."  Her name is Hannah Poling, the 9 year-old lives in Georgia.  The article states how this pretty little girl helped link autism to vaccines.  No, that's not the case.  Except for a few small mentions of mito, the article is mainly about autism and vaccines.  

I have no doubt that after reading this article, thousands of parents will seek out a mito diagnosis for their child.  I've said it before, but the testing for mito must be done by an expert in the field, it is also invasive and painful, and the cost factor is rather high.  Parents may read this article, hear essentially that this girl has autism with a side of mito, not realizing what issues this child faces because of her mitochondrial disease.  They'll see their own child in Hannah, and feel certain their kid has mito too.  I shutter to think of how many autistic children will go through the testing, for no reason.  If these parents seek out real experts, like Dr. Shoffner (who diagnosed Hannah), then I'm certain they will be turned away.  He will only test if their is plenty of evidence that points to a mito or genetic disorder.  But, I fear the parents who will go to any doc who wants to make a buck, put their child under, have them tested, and then receive unreliable results.  This type of reporting is very irresponsible.

What's even more startling to me, is that her parents make no mention of mito.  Granted, reporters have the final say in what they put into a piece.  So, perhaps it was omitted.  But, if it was me, speaking to a reporter about my child who had mito, that would be my main topic of discussion.  I'd want to give as much information out about it, and discuss how it affects my child and her future.  At this point, the family describes that Hannah has mild to moderate symptoms of autism, she can speak also (apparently her loss of speech was quite temporary).  It's been written that she requires intervention these days for the issues related to symptoms of mitochondrial disease.

One key part that I read:  following the vaccines that are "to blame" in this case, Hannah was unable to walk.  She had high fever and crying.  This was followed by inability to sleep.  Three months later, signs of autism began to show.  I look at the fact that she "refused" to walk (which could be muscle-related pain, from her mito disease) as a BIG point here.  That points to mito much more clearly than it would to a PDD (with the exception, perhaps, of Rett Syndrome).  

Awaiting more from all of this.  I certainly would love a t.v. interview with Hannah and her parents.  I am still waiting to hear how her health is and the affects of mito on this 9 year old girl.

6 comments:

Another Autism Mom said...

Very strange indeed... SL, what would be the specific concerns that would be signs of a mitochondrial disorder? I read the webpages about mito disease and came out a little confused because there's such a wide range of symptoms and it can affect an individual mildly or severely. So let's suppose my child has mild mito. What are the unmistakable signs? Thank you!

codeman38 said...

I actually have a copy of today's AJC sitting right here, and the way the story was presented on the front page I find really troublesome.

The headline reads, and this is an exact quote: "First Autism-Vaccine Link: How Hannah Made History."

Only the first two paragraphs are printed in full on page A1. The third cuts off at "The language in the document does not establish a", to be continued on page A14. (The rest of the sentence: "...clear-cut vaccine-autism link.") And even those two paragraphs and a half-sentence are below the fold; all that's above the fold is a big picture of Hannah and the headline.

Someone reading just the front page without going on to page A14 is going to get a distorted idea of the situation; someone reading just the headline, which is all that can be seen in a newspaper box, will get an even more distorted impression. This bothers me, for obvious reasons.

S.L. said...

Hi Another Autism Mom,

That's a hard question. But, typically what we might think of as 'signs' of "mild mito" would actually be more life-affecting. 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, symptoms similar to 'mild' CP, etc. Basically, if a child has mito and it is affecting their body, you will know. Typically, labs are drawn because a physician is inquiring into why the child is having headaches, limping, nausea, illnesses, etc. The results (often can be picked up via a complete metabolic profile, CMP) would point doctors in the direction of metabolic or mitochondrial disorder.

Before a good doctor would put your child through mito testing, they would review all of your child's medical history. If there is nothing significant aside from autism, the doctor would suggest alternative screening or to follow-up if child were to become ill or have more symptoms. They are not going to submit a child to invasive testing, without multiple signs or symptoms of mito.

If you have any questions, please feel free to email me. If I don't have the answers, I might be able to point you in the right direction. stopthinkautismATgmailDOTcom

Thanks! Take care.

S.L. said...

codeman38:

That is unfortunate. And you're right, the majority of people will just read the headlines or browse the first two paragraphs--concluding that vaccines cause autism. Much like tonight, on Larry King Live, mito wasn't even brought up during the first segment, and it was surely not the 'star' of the show.

Very troublesome.

Another Autism Mom said...

Thank you SL!

Girl Power 2 Cure said...

I am the mother of a daughter with Rett Syndrome. In seeking out her diagnosis, we had every test in the book done....one of them for mitochondrial dysfunction through a muscle biopsy. Her mito results were positive.

One thing not mentionned by anyone yet is that mito dysfunction can be the primary cause of problems OR it can be a secondary problem caused by something else....in our case, the genetic mutation of the MeCP2 gene - the Rett gene.

Because of all that is out of whack due to the gene not producing the correct amount of protein, the mitochondria are disfigured and enlarged as a REACTION to her system gone haywire...they are trying to cope.

So, even if the mitochondria come back looking bad, it doesn't mean mitochondrial disorder is a primary event.

And, good news, there is now technology to evaluate mitochondrial dysfunction using something called Near Infared Spectroscopy. We had it done in a clinical study at U Penn. They just strapped a monitor to her leg and she had to kick her leg on and off for 30 minutes while a computer recorded the results.

So, hopefully this info will benefit the story as this all unfolds. Thanks!