Re: Infantile spasms/head back sleeping

[Guest guest]

I'd forgotten that Darwyn used to do this (sleeping with his head tilted back

and chin pointed up)and one of the dr's at the hospital commented that kids

would do this to breath better and how they were smart enough to figure it out

despite adult attempts to put their heads straight. He also sits up in his sleep

to breath better when sick and stuffed up.

Also Darwyn has always loved putting his head between his legs and staring at

the world upside down. Sometimes everything looks better that way!

Mom to Darwyn (5) DS ASD, a few heart surgeries and an EEG tomorrow

Re: Infantile spasms

's Dev Ped had us do an EEG when A was 6 mos old, just to make sure,

but we never saw anything seizure-ish. The EEG was normal

Two odd things we did notice...I used to carry A in a sling (he had 2 older

brothers, ages 4 and almost-2 when he was born, and I needed hands

semi-free!). He would ALWAYS scootch back so his head was hanging

down...eveb when laying on the floor he'd try to bend his neck and look UP

with his eyes! I figured he pretty much wanted everything to be upside down.

This was all the time...he'd fall asleep with his head hanging back and I'd

move him back so his head was supported by the sling, and he'd instantly

push with his little feet so his head hung back down. It was odd.

He also had an odd stim as an infant. He'd lie on his back, starting around

6 mos, and he'd pick his feet up off the ground and sorta pump them up and

down, like a Pilates exercise. And he'd do this trill sound in the back of

his throat, like a super-hard, sustained, rolled " r " while he pumped. It was

odd and very much a stim!

Sigh, and EI saw this and didn't think he had autism because he liked

looking at picture books and music...

Sent from my iPhone

On Feb 23, 2010, at 2:29 PM, " scott hammond " <sjhammond@suddenlin

<mailto:sjhammond%40suddenlink.net> k.net> wrote:

Interesting discussion of infantile spasms and ds-asd. My son started doing

what looked like " reverse hiccups " when he was around 7-8 months. I

dismissed them as just some odd thing he did, never thinking there might be

something wrong. I mentioned the movements to a nurse at a regular check-up,

and she suggested they might be seizures. Gabe didn't get an EEG for another

month, and it was another 2 months before he was on a med that did anything,

and that was only after I'd sought a second opinion and taken in a video

(Gabe cooperated by having a run of seizures right in front of the pedi at

that visit, lol). I'm still not sure why the first pedi was as low-key about

it; the second pedi was on the phone with me the very next day, a Saturday,

right after talking with a pedi neuro about appropriate meds. The right med

(Topamax) stopped the seizures within days of titrating up to the

appropriate dose.

Gabe has never been the Ds superstar I'd thought he might be (lol), but with

the autism and the degree with which he's delayed compared to virtually

every other kid I've met with Down syndrome makes me wonder what effect the

untreated IS had on him. It's not something I beat myself up over (what can

you do to change the past?), but anytime I see on a message board that

someone's baby with Ds is making these " funny movement " , I urge them to get

it checked out asap, and mention that some docs take it seriously enough to

hospitalize the baby to expedite testing and get an appropriate med started.

I thought that I'd read about a connection between IS and the later

development of autism, but I don't know if one causes the other, or whatever

triggers the autism is also involved in causing the IS. I wish we knew more.

Joni in CA, and kids, incl. Gabe, 11, w/Ds and autism