hyperlexia and hypotonia- anyone else?

iVillage Member
Registered: 09-03-2004
hyperlexia and hypotonia- anyone else?
5
Sun, 04-08-2007 - 8:07pm
My 2.5 year old - no dx ,clearly is hyperlexic (knows every color, letter, letter sound, double digit numbers. etc.), hypotonia(very low muscle tone) and frankly just odd. :)
We have rec'd OT, ST and PT through EI since 9 mos. So far no dx- Ped and Neurologist don't want to label him because they have not seen both symptoms in same kid.
My instinct points me to Autism spectrum - Does anyone have child with hypotonia in addition to PDD/Aspergers?
Theresa
iVillage Member
Registered: 06-25-2003
Sun, 04-08-2007 - 8:35pm

Theresa,


My son wasn't hyperlexic, but he was and is hypotonic.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 06-02-2004
Sun, 04-08-2007 - 9:15pm

Hi Theresa! Welcome to the group! Yes, I have a child with both hypotonia and PDD-NOS. However, the two are completely unrelated--as far as we know. Lily has a rare genetic syndrome, Sensenbrenner Syndrome. It's also called cranioectodermal dysplasia, but that's quite a mouth full IMHO. ;) One of the symptoms is hypotonia. There are only 15 documented cases of Sensenbrenner world-wide. I have talked to one of the leading researchers of this syndrome who said that he doesn't have any recollection of any of the patients he studied having an ASD along with this syndrome. I also have talked with one parent of a child with Sensenbrenner and also a 27 yr. old woman who has it. Neither one of them has autism. So, I guess Lily just happened to hit the jack-pot twice. However, I have heard of several other parents whose children have both low tone and some form of autism. I'm not sure what the connection is.

Amy~Natalie & Lily's mom

iVillage Member
Registered: 05-16-2006
Sun, 04-08-2007 - 9:30pm

Hi Theresa

My ds was dx'd at 2 yr 9 mos, and he has hypotonia and had an obsession of letters, colors, and shapes b4 we got his dx.
He had early intervention for behavior (due to his obsession)
He got ST and OT as well. Our son always had a speech delay, and the hypotonia and dyspraxia is why he gets OT.
Now he's gotten away from it but it had hyperlexia written all over it hence he got the PDD tag instead.
Hyerlexia is a cousin on the Autism Spectrum

I'd get a second opinion and keep an eye on the child.

Hope this helps

Nora

iVillage Member
Registered: 05-26-2000
Sun, 04-08-2007 - 11:19pm

Hi Theresa!

Welcome! My ds Josh (7, AS) has hypotonia and hyperlexia as well. We too were in EI begining around 9mos for the hypotonia, as well as sensory problems. Somewhere around 11-12mos we realized he knew numbers 1-10, around 17-18mos we realized he knew all of his letters, somewhere between the two he learned a ton of shapes (rhombus,trapezoid etc.). This was to the point of obsession until about age 3 when Star Wars took over.

I agree--keep an eye on your son. Also, imho, keep expressing your thoughts and feelings to the medical and therapy staff as well. I wish I had because we might have been able to get a diagnosis (even if it wasn't AS) and more appropriate, diagnosis-specific services much sooner. Let us know how things go.

Hugs,
Heather

iVillage Member
Registered: 03-26-2003
Sun, 04-08-2007 - 11:38pm

If they have not seen hyperlexia and hypotonia in the same kid then they really need to get out more and meet more AS kids.

Yep, my dd (12) was hyperlexic and had a hypotonia dx when she was 3. She currently has a Aspergers dx.

There are many many kids kids with AS who were/are hyperlexic. It is a trait of AS that the kids often have poor motor coordination and hypotonia is pretty darn common from what I have seen.

Renee

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