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I hope I'm not being rude....

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I hope I'm not being rude....

Postby iansmommy » Tue Mar 01, 2011 5:43 pm

Hello,

I was wondering if I could ask a question, I hope I am not being rude I just really do not know where to ask this!!

I have a 6 month old son who is very stiff. I noticed it and pointed it out to the Dr. at 4 months and she sent him to a physical therapist to get evaluated--who said everything looked fine. Well, at his 6 month appointment the Dr. said she is still concerned about my son and referred us to the CP clinic in Houston. They can't get us in until June (YES JUNE!!) so I was wondering if I could get some insight. Again, I'm really sorry if this is rude!!

*He sits completely unassisted (can sit like that for like 20 minutes) and started doing so at 5.5 months. (but he does keep his hands raised a bit to the sides of him when he's sitting--like a teddy bear). (Sometimes I'll have to physically "bend" his midsection because he's usually straight, but once I do he can sit for a long time--doesn't fall back).
*He can hold his head steady and started at 5 weeks.
*He can stand holding onto something.
*He has rolled over both ways but only a handful of times, but I just think he doesn't want to because he is able.
*When laying on his back he crosses (scissors) his legs but always unscissors them when he's picked up.
*He can reach for and hold objects in both hands
*He is really stiff about 80% of the time. If you bend his legs a few times, though, you can "un"stiffen him, and he'll be totally average toned while you are moving his legs around. Is it "normal" to be able to loosen up a baby with high tone?

Basically, I've looked everywhere for information on a child with CP who isn't missing physical milestones and I couldn't find any. Is this a common thing?

Thank you so much for any information you could toss my way.
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Re: I hope I'm not being rude....

Postby LeaciesMum » Thu Mar 17, 2011 3:51 am

Hi there, I didn't find anything 'rude' about your post at all. I can totally understand your quest for information.

Cerebral Palsy is just an unbrella term for a whole range of movement issues and there are many varying forms of CP as well as severity. Some children can have it so mild it's not even picked up until later in life, or others can just have a bit of a limp. I know before I had my daughter I thought all CP was the most severe form. How my eyes have been opened.

I know with my daughter she was reaching her milestones until about 8mths, that's when I noticed I couldn't 'bicycle' her legs easilly, had trouble spreading her legs for nappy changes, her hands remained fisted. This is when we found she had CP, a total shock as she was a full term baby with a normal natural delivery.

When she was first diagnosed we were told it was only mild, at best she would walk with a limp, at worst she would use a walking frame. Unfortunately at this young age it's impossible for them to fully tell just how severe or mild it will be. As Leacie grew she became tighter and tighter, it became near impossible to spread her legs (they scissored badly) it ended up she had an operation to release the adductor muscles in her groin. This made a huge difference.

Leacie is almost 5 now and the 'mild' diagnosis has long gone, she is now classified as severe, although her speech is perfect, her intelect is above average and she can bunny hop crawl.

I don't know where you live (I'm in Australia) but we work on a Gross Motor Function Classification System (GMFCS), if you google this and look for one that covers your childs age you should get an idea where he's at. Leacie is a Level 4.

Also there are differing types of tone, spastic (stiff), athetoid (uncontrolled), ataxic (poor balance & depth perception), dystonic (fluctuating tone) and mixed tone could be a mix of any of them, which is what my daughter has.

I hope this has helped some.
* A Strong Mind Can Compensate For A Weak Body *

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Cerebral Palsy Forum • Post a reply

Postby RodeLive » Fri Mar 18, 2011 8:22 am

Hi there, I didn't find anything 'rude' about your post at all. I can totally understand your quest for information. Cerebral Palsy is just an unbrella term for a whole range of movement issues and there are many varying forms of CP as well as severity. Some children can have it so mild it's not even picked up until later in life, or others can just have a bit of a limp. I know before I had my daughter I thought all CP was the most severe form. How my eyes have been opened.I know with my daughter she was reaching her milestones until about 8mths, that's when I noticed I couldn't 'bicycle' her legs easilly, had trouble spreading her legs for nappy changes, her hands remained fisted. This is when we found she had CP, a total shock as she was a full term baby with a normal natural delivery.When she was first diagnosed we were told it was only mild, at best she would walk with a limp, at worst she would use a walking frame. Unfortunately at this young age it's impossible for them to fully tell just how severe or mild it will be. As Leacie grew she became tighter and tighter, it became near impossible to spread her legs (they scissored badly) it ended up she had an operation to release the adductor muscles in her groin. This made a huge difference.Leacie is almost 5 now and the 'mild' diagnosis has long gone, she is now classified as severe, although her speech is perfect, her intelect is above average and she can bunny hop crawl.I don't know where you live (I'm in Australia) but we work on a Gross Motor Function Classification System (GMFCS), if you google this and look for one that covers your childs age you should get an idea where he's at. Leacie is a Level 4.Also there are differing types of tone, spastic (stiff), athetoid (uncontrolled), ataxic (poor balance & depth perception), dystonic (fluctuating tone) and mixed tone could be a mix of any of them, which is what my daughter has.I hope this has helped some.

:)
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Re: I hope I'm not being rude....

Postby CPFamilyNetworks » Wed Jun 08, 2011 2:48 pm

We put together an article explaining the many physical and mental issues surrounding Athetoid Cerebral Palsy. The effects of Athetoid CP injuries depend on the location and severity of the damage. Diagnosis at an early age is problematic as motor skills are still developing. Find out symptoms, causes, and treatment in our article Athetoid Cerebral Palsy. Check this page out:
http://www.cpfamilynetwork.org/medical- ... bral-palsy
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Re: I hope I'm not being rude....

Postby ncm » Thu Jun 09, 2011 5:28 pm

hi
you are your childs only advocate and if you have to call them everyday to see if there are cancellations then so be it , get your therapists and doctor to send in an urgent referall that may help i did all these and i got my son in witin weeks.
I was watching the ontario news one night and i came across this , it may be helpful and it may be something that is treatable for your child you just never know
http://www.ctv.ca/CTVNews/Health/201009 ... ia-100919/
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Re: I hope I'm not being rude....

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