FAQ - Cerebral Amyloid Angiopathy, Familial
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How did you feel when you found out that your child had cerebral palsy?


We always knew that our now 16 month old daughter was a little 'behind' for her age, but when the paeds told us yesterday that she actually had cerebral palsy - I was dumbfounded.

It took a whole day to sink in, and I wasnt hit with the severity of it until this morning (and it felt like I was hit with a shovel on the head).

I'm devistated. How did you feel? What did you tell your family?
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I'm a 26 year old female with mild spastic diplegia cerebral palsy, and although I obviously don't remember being diagnosed, I do know that my mother worried more BEFORE the diagnosis than she did afterwards. Like you, she knew something was wrong, and she was relieved when the doctors told her what it was because now "it" had a name.

I suspect what you are most worried about is how your daughter is going to function in a "normal" world. I'm not going to lie, it's very hard, and it's probably going to be harder on you than it will be on your daughter. But one thing my parents did for me that was absolutely invaluable was to tell me from a very early age "Don't ask us for help if you can do it yourself." They would show me how to do things, and then expect me to do them, even if it took me three times longer to get it done than everybody else. It made me feel at times like they didn't really love me; especially when they would just stand there after I fell and watch me pick myself up again--which at the beginning took a full five minutes. I now realize of course, that they were doing this because they loved me. Independence is a LIFELONG process.

As your daughter grows and develops, you will learn what the severity of her disability is, and how much she is really capable of, but I'm going tell you right now, if you push her, she will me MUCH more capable than the doctors give her credit for. Push her, push her, push her! It's painful but oh, so necessary. You cannot begin to teach your daughter independence at the age of 25 and expect her to catch up with everyone else. I am what I am today because I have spent a lifetime learning it.

Your dreams for your daughter will need to be readjusted, but they do not have to die, and this is what I would tell your family. I have been alble to achieve everything I set my mind to, even if it took me a little longer to reach my goal. I'm trusting the same will be true for your daughter. The only thing I cannot do is drive. I am in grad-school for my Masters in Divinity right now (so I can preach), and I would love to get my PhD someday. I walk and do pretty much everything for myself, even if it is awkward. I have some self-image issues because of the fact that my walking gait is ugly, but that's my own junk to deal with.

This is not a death sentence. Please believe that. Inside your daughter is a wonderful, God-made person just waiting to get out with your help. Make sure you have good physicians and physical and occupational therapists, and you will be fine.

Let me know if you need anything else. I'm here to help.  (+ info)

What should one expect after a cerebral surgery?


I have a brain surgery on the 8th of september to remove a tumor in my cerebellum. The tumor is expected to be an Ependemoma in the upper left cerebral Tonsil.
Does anyone know what some postoperative affects this surgery may cause?
(I haven't had my preop yet)
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Temporary memory loss. One side of your brain stores memory and thoughts, so if that area is where the tumor is, one should probably expect to have temporary memory loss. Of course, that is JUST my opinion, I am nottt a surgeon, and cannot diagnose you with such a diagnosis, so I wouldnt know for sure.

Contact me: [email protected]  (+ info)

Is cerebral palsy the outcome of all in utero stroke children?


Grandaughter diagnosed with in utero stroke on left side of brain. She has some right side weakness. Everywhere I look it seems like cerebral palsy is the outcome. Does anyone know?
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CP is

a non progressive lession with an abnormality of motor function (the ability to move and control movements) that is acquired at an early age either prenatal perinatal or post natal up to 2 years of age..

So to answer you question, an in utero stroke is generally considered cerebral palsy specifically hemiplegic cp (one side of the body)


Hope this helps  (+ info)

what is a treatment for Pancreatitis and Cerebral ?


We have a 20 year old son with Cerebral Palsy who has been diagnosed with pancreatitis. He has had several episodes in the last several month. We are severely concerned because all the doctors cannot find what is causing it and what would be an appropriate course of action to treat it.
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His doctor doesn't even know. What makes you think regular people will? Seek a second, third, forth opinion.  (+ info)

Do people with severe cerebral palsy understand what you say to them?


There is such a wide range of severity with cerebral palsy. I am wondering if a 12-year-old child with very severe cerebral palsy (cannot walk, talk, eat without help) understands what I say to him. Thanks!
Thanks for your answers so far! Based on your answers, he may be able to really understand me. So to him, do you think it would be offensive if I talked to him very sweetly almost "baby talk"? Or should I speak to him (nicely of course) like any other 12-year-old?
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Absolutely. Some are very smart and understand everything.

"Spastic Cerebral Palsy, the most common form of CP, causes the muscles to be tense, rigid and movements are slow and difficult. This can be misinterpreted as cognitive delay due to difficulty of communication. Individuals with cerebral palsy can have learning difficulties, but sometimes it is the sheer magnitude of problems caused by the underlying brain injury that prevents the individual from expressing what cognitive abilities they do possess."

http://en.wikipedia.org/wiki/Cerebral_palsy  (+ info)

How can playing with a child that has cerebral palsy be beneficial?


Just wondering, what things I could do with a child that has cerebral palsy and what benefit does it have for them? School assignment
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playing with a child that has cerebral palsy stimulates the 'learning' part of their brain, which can make it stronger...

singing with actions are good, as well as any action games, like simon says... etc. Colouring or Drawing, Shape sorter, Playing Tea Parties or something - anything that might encourage social interaction... try googling it, u may be surprised what you find!  (+ info)

How to introduce a special needs (child has Cerebral Palsy) child into an relationship?


This child is nine years old and has Cerebral Palsy and has the following needs:
-cannot feed himself
-wears a diaper and has to be changed
-drools constantly
-cannot talk
-walks with a limp

The relationship is moving forward quickly and intensely. What is the best way to introduce a special needs child into the relationship without making the other person feel awkward (and perhaps uncomfortable)?

Thank You
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  (+ info)

Does anyone know any exercise programs that someone can do with cerebral palsy?


I'm 19 and have an extremely mild case of cerebral palsy. I have balance issues and some muscle pain. I am about five to ten pounds overweight and want to lose weight to see if that will help with my irregular periods. Does anyone have any ideas for me? I have been trying so hard but nothing is helping and I am so upset because I can't do fitness programs that are on tv and suggestions?
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Hi,
I'm 20yrs old i have moderate CP and currently use a walker (i will be switching to crutches within a few weeks).I go to the gym 5-6 days a week and have been for about 9 months. I've noticed considerable strength gains overall and combined with stretching expect to be walking unassisted within a few months. honestly what i recommend is a change in diet and four days a week on a treadmill and or another cardio machine for somewhere between 15-25 minutes per day
-hope this helps,Austin.  (+ info)

Is California a good place to live with people that have cerebral palsy?


I'm a 22 year old male who has cerebral palsy and I'm thinking about moving from Tennessee to California.How is California toward people in my condition,and where would be the best place to live at?I know San Francisco is to hilly so please can some one help me out here.
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I am not familiar with CA and how they react to people with Cerebral Palsy as I live in another part of the country, but one way you can find out is to check with United Cerebral Palsy's chapter in the San Franscico area. You can find out more about this by going to: http://www.ucp.org or find them on Facebook.  (+ info)

How to treat Pancreatitis and Cerebral Palsy NEED HELP?


We have a 20 year old son with Cerebral Palsy who has been diagnosed with pancreatitis. He has had several episodes in the last several month. We are severely concerned because all the doctors cannot find what is causing it and what would be an appropriate course of action to treat it.
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See another doctor. You are not going to get an answer here.  (+ info)

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