Hi I'm new

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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SaucySarie
Posts: 1
Joined: Tue Jun 15, 2010 6:55 am

Hi I'm new

Postby SaucySarie » Tue Jun 15, 2010 7:32 am

I'm Sarah, and I have 2 1/2 y/o GGB triplets. They were born 11 weeks early and my identical girls suffered brain damage PVL (which is another long story). Anyways fast forward seven months both girls were right on target for their age and they both were dx with Infantile Spasms. The seizures made all of their milestones go away. When Anna, triplet #1, became seizure free, she had developed high tone in her legs and low tone in her trunk. Her toes now constantly point and her feet curl out at the ankles. Ayva, triplet #2, didn't become seizure free until just recently, in March. Right after her seizure dx she too had high tone in her legs. NOW, she is severely hypotonic. Her feet also tend to point, although not as much as Anna, and curl out at the ankles also, but again not as severely as Anna. They were both dx with spastic CP, even though I don't feel like Ayva fits into the spastic catergory. They boh have Cortical Visual Impairment (CVI) and are globally delayed. My son, the only one of the three who didn't suffer bran damage, is doing well.

I have tons of questions for other parents, especially about Ayva. I know CP has so many varying degrees, but when I've asked about others with CP, they tell me it can vary so much and that's not really answering my question.
Can CP go from high tone to low tone?
Do your LO's who have high tone, does their feet curl under at the ankles?

And I know I'm still in the denial stage of things, but I've done some research online (which isn't the brightest idea I ever had) and found something called Dopa Responsive Dystonia. It mimics CP but is basically cured with meds. I know I would like for my girls to have that rather than CP, but I can't really tell right now if it's my brain saying the symptoms match or my heart, you know?

Thanks.

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LeaciesMum
Posts: 31
Joined: Sun Feb 28, 2010 3:30 am
Location: Melbourne, Australia

Re: Hi I'm new

Postby LeaciesMum » Wed Jun 16, 2010 4:50 pm

Hi Sarah, I can only imagine where your head is at right now. I have only one daughter with CP and I found that hard enough to accept at first.

With regards to the feet my daughter Aleacia has what I call 'funky feet'. The tendons are so tight on the outside of her ankle they pull her feet right out and the front half of her feet sort of bend outwards too. The poor little dolly when she stands it's virtually on her inner ankle bone. Her toes also are all screwed up and sitting on top of each other. Before she had a diagnosis I used to call them her 'ballerina' feet.

Her AFO's help a fair bit with correcting how her feet should be when standing, but unfortunately she can't crawl (she bunny hops) in her AFO's so she only wears them when she's in her standing frame or when she's in her wheelchair.

Aleacia also has high tone in her arms and legs but low tone in her trunk. We are very fortunate her neck and head aren't affected very much at all.

I've also looked into DRD, but unfortunately that's not what Leacie has. To date there is still no known cause for Aleacia's CP (she's had endless tests), our paediatrician told us that she is a mystery girl and there are a small percentage of kids with CP with no known reason.

I wish you luck with your tests etc. I hope I can help in any way, if only with support and a good ear. :D
* A Strong Mind Can Compensate For A Weak Body *

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Acero
Posts: 2
Joined: Mon Aug 16, 2010 10:57 pm

Re: Hi I'm new

Postby Acero » Mon Aug 16, 2010 11:07 pm

Yes I definitely agree with you LeaciesMum. It is really hard to accept that one day as we wake up in the morning, our son has CP. There are many adjustments to be done in that case.
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