Anyone else out there with cerebral palsy? - Mothering Forums

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#1 of 28 Old 10-03-2009, 12:06 AM - Thread Starter
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It's been a long year. My daughter is 18 months and she has just started crawling. She has hemipelgia due to a stroke which is the cause of her cp. She wears 2 AFOs, has a stander and will soon have a walker. I was wondering if there were any one else on here dealing with something similiar.

Thanks
Kara

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#2 of 28 Old 10-03-2009, 08:58 AM
 
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I believe there are children here with cp.

FWIW, my daughter wears KAFO and a henged AFO.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#3 of 28 Old 10-03-2009, 07:58 PM
 
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My DD has CP, but much more severe....not sure if anything I could share with you would be helpful! Just letting you know we hang around here.
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#4 of 28 Old 10-03-2009, 11:28 PM
 
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My 3 month old had a stroke in utero and now has a diagnosis of PVL. They have not diagnosed CP yet, but we were told that in 60% of her cases CP is diagnosed at 1 yr, so we are watching and waiting. When was your DD diagnosed with CP?
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#5 of 28 Old 10-03-2009, 11:30 PM
 
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Hi Kara,

My DD's neurologist just speculated that she might have CP due to a birth injury, but we're a long way from confirming that diagnosis. Her MRI didn't show any abnormalities, so since she has low muscle tone as her major symptom, we have to pursue genetic and metabolic testing before they could proceed with that diagnosis. I won't hold my breath.

However, she is just 19 months now, and kind of crawling too now at the moment--she went from rolling everywhere a few months ago to nearly full-fledged crawling now!! We're so excited!!

We just met with some support services on Thursday for the Provincial program we were referred to who mentioned a stander and a walker.

So even if we don't end up with the same diagnosis in the end, sounds like we may be near the same stage right now!
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#6 of 28 Old 10-04-2009, 08:56 AM
 
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Hi Kara-
My DD2 is 16 months old and probably has CP. Our main dev ped doesn't like to actually diagnose until the age of 2, but he also says it is highly unlikely at this point that we won't end up with the diagnosis. Charlotte had a hypoxic brain injury at birth (HIE- hypoxic ischemic encephalopathy) from a knotted umbilical cord and a pretty abnormal MRI soon after, so there's not much mystery about what is going on with her. She is mainly hypotonic, rolls pretty well, does a little scooting, but is still pretty far from sitting or crawling. I understand how hard this all is and am sending along a hug. We've elected to do a fair number of alternative interventions and I'd be happy to share our impressions and experiences if you are interested.
All the best to you and your DD. It is absolutely FANTASTIC that she's crawling!
-Rachel

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
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#7 of 28 Old 10-04-2009, 03:23 PM
 
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My son has CP. He had a grade II brain bleed at birth. For the first three years the neuros simply referred to it as 'brain damage'. Then at three when we switched neuros she said 'of course it is CP'.

We were constantly reminded by the neuros that we could not be sure of the long-term affects of the bleed and now at age five it seems to be mild. The first two years of my son's life were difficult as he was incredibly tight, didn't roll over at a year, and walked late. He used his arms, mostly one arm, and drug himself around the house. He has not needed AFO's, walkers, etc and at this point his CP is not obvious. We had some wonderful therapists, especially his PT.

He has a lot of pain in his lower body and the doctors believe it is a result of the CP. (He's been diagnosed with another neurological condition but was not showing signs at the last NCV test so they assume the pain is from the CP.) He is still very tight and requires daily stretching.

I know a few children who have severe CP. I also know a few children, like my son, who have been luckly to improve greatly and have less effects.
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#8 of 28 Old 10-06-2009, 05:32 PM
 
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Hi I'm fairly new here

but

My daughter has CP. She was born at 28 weeks with a grade III hemorrhage (sp) that resolved without intervention after two months of age. She feeds via g-tube, does not walk, does not stand, and is nonverbal. We were told that if she wasn't walking by age 7 then there is high possibility that she will never walk. We have been trying to get her into therasuit therapy to improve her chances of walking but her Othopedic doctor thinks its "over the top" for therapy. We've also attended Kennedy Krieger intesive feeding therapy program but we did not have any lucky with her swallowing let alone her eating. We knew early on that she would have CP, I think she was diagnosed around 1 yr of age. She has been in therapy since she was about 6 months old. I just wish that I would have tried to do more for her when she was younger rather than waiting until she was older to start seeking intensive therapies. I did not know much about the diagnosis, which I guess left me not to seek avenues to help her.

It has been a long road for us and I can't imagine what the rest of the road holds but hopefully things will get better for us. She has AFOs, walker, wheelchair.

I hope every day that she will become somewhat independent.
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#9 of 28 Old 10-06-2009, 11:47 PM
 
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My daughter has CP and is almost 2-1/2 years old. She had a Grade III brain bleed and seizures at one day old due to hypoxia.

She can sit by herself for very short periods and can belly crawl by pulling herself with her arms. She cannot crawl, walk, or talk. She wears AFOs and is learning to walk with a walker. She also has a stander, a positioning chair, a Convaid stroller, and a bath chair, as far as equipment goes.

She has cranio-sacral work, PT, and OT as well as a teacher once a week each. She sees a ST every other week, but we are hoping to increase that soon. Cognitively, she is very, very smart. She understands everything we say, but can't talk yet because of her muscle tone. The ST says she will talk, it's just a matter of time and therapy.

We also give her two supplements, phosphatidylcholine (http://cptreatments.blogspot.com/200...-phoschol.html) and fish oil. She also sees a homeopath and has a constitutional remedy that she takes.

She sleeps horribly, so I am going to try a weighted blanket and I just ordered this CD: http://www.hemi-sync.com/shopexd.asp?id=375
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#10 of 28 Old 10-07-2009, 12:44 AM
 
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She sleeps horribly, so I am going to try a weighted blanket and I just ordered this CD: http://www.hemi-sync.com/shopexd.asp?id=375

Corbin's Mama-
My DD's sleep improved immensely after we started hyperbaric oxygen treatments. At 5 months, we started and she went from only being able to sleep in the car or the swing for brief periods to being able to sleep like a typical infant. From what I hear, a fair number of brain injured kids have improved sleep with HBOT. Please feel free to PM me.
All the best-
Rachel

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
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#11 of 28 Old 10-07-2009, 11:53 AM
 
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As Rachel suggested, I've read of great results with HBOT but we have not tried it.
My son also did not sleep well. In his case we've discovered it was because of his lower body pain which is worse at night. When he was an infant he cried constantly and slept little - which we assumed was because of his reflux. We didn't discover until he could talk that he has lower body pain. We noticed he was grabbing his legs and holding his lower back, and suspected pain but the neuros and orthos all said CP does not cause pain. But they were wrong - in his case. At age three the neuro prescribed daily Neurotin but we have not given it to him. We've been able to lessen the pain with nightly stretching, hot baths, CLO, and when really severe pain relief meds. This may not be the case with your daughter but thought I'd mention it. My son is now five and has occasional bad nights; but most nights he sleeps well.
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#12 of 28 Old 10-07-2009, 12:44 PM
 
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Hi Kara.

My son is 16 mos. He had an ischemic stroke in utero and has been diagnosed with congenital hemiplegia (cerebral palsy is an umbrella term that his coniditon falls under).

He has significant right side weakness. He is now starting to crawl after scooting for months. He is also consistently pulling to stand and beginning to cruise. We are very excited at how well he is doing. It has happened all at once it seems as well. We were getting very discouraged and all of a sudden things started happening.

His right hand is the most affected-he keeps it in a fist most of the time so we really are working hard in OT to get him to use it more. We do OT/PT and water therapy every week. All the therapy is wonderful-we are very lucky to have therapists we love.

My son is crazy about the water now-if you have access to this kind of therapy I would highly recommend it. The water supports their body and helps them learn to use their affected side without pressure.

We do not know the long term prognosis at this point. Our neuro's best guess is he will drag his right leg a bit especially when tired. They aren't mentioning his hand which suggests they are not quite as hopeful in regards to increased usage.

Betsy
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#13 of 28 Old 10-07-2009, 01:22 PM
 
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Thanks! I have wanted to try HBOT, but it's a matter of $$ and what insurance will pay.
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#14 of 28 Old 10-12-2009, 08:19 PM
 
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My son (4 1/2) has hemiparesis cerebral palsy due to birth injuries. We had a homebirth with Nancy Wainer Cohen (she should stick to writing books and stay away from attending births!) His left side is primarily affected, his arm and hand more than his leg. He wears braces on his feet when walking. He sees a physical therapist once a week, occupational therapist two times a week and a speech therapist three times a week. We also work with a developmental movement specialist whose advice we take very seriously! He gets cranial sacral therapy as well as chiropractic care (both a regular chiropractor and a chiropractic neurologist.) When he was 2 years old he learned to crawl right after we did 40 dives of Hyperbaric Oxygen Therapy. He is currently knee walking and crawling to get around the house. He eats and sleeps with no problems. We take it one day at a time. I do remember the first two years of his life being very scary about not knowing what the future would hold and I've meditated long and hard on letting go.

I often feel frustrated when I come to this forum looking for others with children who have cerebral palsy as there is quite a glut of "on the spectrum" related threads so it's nice to "meet" you all!

Opinionated Mama to dd 2/23/03, ds 3/20/05 hbac, dd 1/23/08 2hbac, and baby #4 due in June 2010!
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#15 of 28 Old 10-15-2009, 02:20 AM
 
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I have two SN kids (so far, we'll see how the baby does!!) My oldest daughter is non-ambulatory and until this year was non-verbal. We were able to work with her and get her to use 'ga-ga' to request food. Thrilling. I am grateful for everyday with her. I still have days when I wonder why she has to suffer, but I am learning to appreciate the present. She was born at 38wks when I was told by a perinatologist that there were signs of IUGR. My labor was induced, and 48 hours later she was born, vaginal, hospital birth and again, there are days I wonder if I made the right decision following the doctors advice. I guess I can be comforted to know that before the birth there were obvious problems. Many many people still ask me if I feel it was a 'birth injury', and I honestly don't know.......not knowing is the place we all live in. Especially SN parents. Living in 'not knowing' is getting more comfortable everyday.......glad to see other's here with CP diagnosis. I also have a 4yr ds with recent autism diagnosis.
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#16 of 28 Old 10-15-2009, 12:05 PM
 
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Originally Posted by LynnE73 View Post
He gets cranial sacral therapy as well as chiropractic care (both a regular chiropractor and a chiropractic neurologist.)
LynnE73-
Who is your chiropractic neurologist? We see one in Norwich, VT whom we love!
-Rachel

Mom to DD1 (Feb 2006) and DD2 (June 2008) with HIE, CP, dev delays and reflux
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#17 of 28 Old 10-16-2009, 03:05 PM
 
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I have a 3 1/2 year old with Dystonic Quadriplegic CP. His diagnosis before the CP was also HIE. Gabe's CP is due to a Placental Abruption I had He is also not ambulatory (uses a Kid Kart) is tube fed, takes 6 meds three times daily, etc. He has high tone, and sometimes low tone. We use a stander, a tumbleform chair, and Gabe receives PT/OT/speech in preschool now.
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#18 of 28 Old 10-17-2009, 07:06 AM
 
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Our son Erik has CP (spastic diplegia) he is mild/moderate. He walks with a walker and crutches (four prong). He's had PT from birth. He has had OT since 18 months. We has both twice weekly. He has had botox and serial casting. This January he will likely undergo a SDR (selective dorsal rhizotomy) to reduce the tone in his legs and help prevent deformities. It is is legs that are affected and he has issues with spasicity/hypertonia. Of course this is leading to contractures etc.

We've run the gamut with PTs and neurologists.
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#19 of 28 Old 10-17-2009, 02:19 PM
 
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Hi everyone,

I don't know if this will be helpful or not, but my dh has CP. I always think it would be helpful for others to hear about an adult, but i know I could be wrong. From what I know from my MIL (who has passed away), he slept most of his first year and definitely was very delayed in sitting, crawling (i'm pretty sure he never crawled, just scooted) and he took his first few steps alone at about 4 years old. My MIL had him in therapy at a very early age and had numerous surgeries to help straighten his legs. He is 45 now, so i'm sure many things are out of date now. As an adult he walks with a limp/lilt to the side, people ask if he had a car accident, a few have asked about polio, and maybe a rare person has thought CP. With the exception of the walking being obvious he lives a "typical" life, we have three kids, he just started biking with a three wheeler, he started adaptive skiing a few years ago, and he has always liked swimming. I do know that there is a huge spectrum, and that he is on the milder side, but as a child he was diagnosed as never going to walk or talk, so he wasn't on the very mild end.
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#20 of 28 Old 10-17-2009, 05:21 PM
 
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Originally Posted by GearGirl View Post
Hi everyone,

I don't know if this will be helpful or not, but my dh has CP. I always think it would be helpful for others to hear about an adult, but i know I could be wrong. From what I know from my MIL (who has passed away), he slept most of his first year and definitely was very delayed in sitting, crawling (i'm pretty sure he never crawled, just scooted) and he took his first few steps alone at about 4 years old. My MIL had him in therapy at a very early age and had numerous surgeries to help straighten his legs. He is 45 now, so i'm sure many things are out of date now. As an adult he walks with a limp/lilt to the side, people ask if he had a car accident, a few have asked about polio, and maybe a rare person has thought CP. With the exception of the walking being obvious he lives a "typical" life, we have three kids, he just started biking with a three wheeler, he started adaptive skiing a few years ago, and he has always liked swimming. I do know that there is a huge spectrum, and that he is on the milder side, but as a child he was diagnosed as never going to walk or talk, so he wasn't on the very mild end.
Thank you, that is nice to hear. I always worry about my son as he ages. I am so pleased to hear that your husband has a very normal life. My son is normal in every other way (that we know of) except for the walking bit.
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#21 of 28 Old 10-17-2009, 06:33 PM
 
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Hi
My dd has a rare brain malformation and still does not walk at almost 3 yo. She can scoot around and can stand with assistance and take a few, stiff-legged steps. We have no idea if she will be able to walk, but we work with her every day and she makes progress, slow and steady. She also has speech delay, though she understands most of what we say. It's hard now lugging her around, but I wear all 35 lbs of her in an ergo most of the time when I take my older dd's out and about. She has OT and PT once a week. So although she doesn't have CP, I feel you on the whole walking thing.
Best of luck,
Sarah, Mama to 3 unschooled girls ages 8.5, 5.5 and 2.5

Sarah, unschooling musician mama to Ella (12/24/00) , Aurora (1/31/04) and Hazel (1/30/07) (agenesis of the corpus colosum, large interhemispheric cyst, macrocephaly, shunt). homeschool.gif bfolderchild.gif familybed1.gifguitar.gif
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#22 of 28 Old 10-17-2009, 11:53 PM
 
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GearGirl, Thank you for posting your DH's story. I always love hearing about adults with CP. Even though there is such a wide range, it's always nice to hear what the future may hold. I don't know about other moms of CP kids, but sometimes the present is so overwhelming, it's hard to think that the future may be fine (or at least better or easier to cope with).
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#23 of 28 Old 10-18-2009, 01:21 AM
 
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I have a 6.5 year old son with CP. He was diagnosed with Hydrocephalus when I had my 20 week ultrasound. We are not sure if his CP was caused by that, or caused by him not breathing for quite a while after birth (I really feel I should have delivered him by c-section due to his large head size and part of the reason for him not breathing was due to him being in the birth canal for so long with a deceled HB). He takes 60 mg of Baclofen a day, uses AFOs, and a walker. We are in the beginning stages of him starting to use forearm crutches. He has a milder form of CP only mainly affecting him from the hips down.


I also am pretty sure he has the inattentive subtype of ADHD (pretty much ADD although that is an outdated acronym). I have suspected it for a while but it is starting to cause issues with his learning at school so I have finally brought it up with the school so hopefully it can be addressed in his IEP so he doesn't fall through any cracks b/c he is otherwise extremely intelligent as most kids with ADHD are.

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#24 of 28 Old 10-18-2009, 11:52 AM
 
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Originally Posted by GearGirl View Post
I don't know if this will be helpful or not, but my dh has CP. I always think it would be helpful for others to hear about an adult, but i know I could be wrong.
I think it's incredibly helpful to hear about adults with CP. Sometimes it's hard to look that far ahead right now. Thank you for sharing your story!

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With the exception of the walking being obvious he lives a "typical" life, we have three kids, he just started biking with a three wheeler, he started adaptive skiing a few years ago, and he has always liked swimming. I do know that there is a huge spectrum, and that he is on the milder side, but as a child he was diagnosed as never going to walk or talk, so he wasn't on the very mild end.
Even though we're not sure that DD has CP, it is still good to know that even though she may seem so far behind her peers right now, a "typical" life is still in the realm of possibility for her.

Thanks again!
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#25 of 28 Old 10-18-2009, 02:18 PM
 
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I think it was very hard on my dh's parents when he was diagnosed. They ended up divorcing (and would have even without special needs and the stress of that) but my MIL certainly put a large portion of the blame on my dh's father not being able to deal with it. I think he tried, but "image" was very important to him and not having the "perfect" child was hard. I think when dh and I got together his dad finally started to see the person more than the disability. Again, I think it had to do with images. At the time before my three kids I was looking pretty cute and I was going to law school so I was also seen as smart. Suddenly he saw his son as a person with a regular life. Unfortunately I think that caused him to miss out on so much, my dh had a way better life going for himself before we met than most people I know. I still marvel at the number of close friends he has when I struggle with meeting people.

The disability as an adult manifests itself in some interesting ways to me. One thing is that wherever he goes people recognize him. He honestly thinks this is true for everyone, and has no idea what it is like to go into the same coffee shop day in and day out and not be greeted by name. It's so funny how many people only recognize me when I'm with him! On the rare occasion someone will make a stupid comment, usually teenagers. He ignores it, but I'm always ready to snark back, but that's how I am .
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#26 of 28 Old 10-20-2009, 02:42 AM - Thread Starter
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My 3 month old had a stroke in utero and now has a diagnosis of PVL. They have not diagnosed CP yet, but we were told that in 60% of her cases CP is diagnosed at 1 yr, so we are watching and waiting. When was your DD diagnosed with CP?
Well *I* diagnosed her long before a doctor. I knew at 6 months or so that I was looking at hemipelgic cp. I take my dd to a huge Children's hospital and they have a special clinic for kids with cp and one for kids with strokes. Our first visit in the CP clinic was at about 10 months old.

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Hi Kara.

My son is 16 mos. He had an ischemic stroke in utero and has been diagnosed with congenital hemiplegia (cerebral palsy is an umbrella term that his coniditon falls under).

He has significant right side weakness. He is now starting to crawl after scooting for months. He is also consistently pulling to stand and beginning to cruise. We are very excited at how well he is doing. It has happened all at once it seems as well. We were getting very discouraged and all of a sudden things started happening.

His right hand is the most affected-he keeps it in a fist most of the time so we really are working hard in OT to get him to use it more. We do OT/PT and water therapy every week. All the therapy is wonderful-we are very lucky to have therapists we love.

My son is crazy about the water now-if you have access to this kind of therapy I would highly recommend it. The water supports their body and helps them learn to use their affected side without pressure.

We do not know the long term prognosis at this point. Our neuro's best guess is he will drag his right leg a bit especially when tired. They aren't mentioning his hand which suggests they are not quite as hopeful in regards to increased usage.

Betsy
We looked into water therapy, but no one will take a kid in diapers . We can get hippotherapy (with horses) so we might go for that.

One thing you might ask your doctor about for your sons hand is a DMO (dynamic movement orthosis). It's a cloth hand brace that works like taping. It's helped my little one quite a bit with the tightness in her hand.

Kara, single mom of 4 girls (5, 8, 16 and 19) crochetsmilie.gif
Kids have strokes too! superhero.gif 

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#27 of 28 Old 10-21-2009, 12:49 PM
 
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Well, if some find it helpful to hear about adults with CP, I worked for several years with a woman who has CP, I still know her in a professional relationship. This was related to being born very premature, but that's all I know about what type it is.

She said when she was a very young child, the doctors told her she would NEVER walk and would remain in a wheelchair for the rest of her life, then later, after she began walking, they told her she would not walk without crutches.

Well she walks on her own, with a bit of a lean, but otherwise you would not know she has any difficulties. I know it took several unpleasant surgeries to get her to this point.

It always touched me to hear how much she has overcome, because she lives an accomplished and successful life and is quite mobile for someone who started life told they would be forever confined to a chair.
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#28 of 28 Old 10-21-2009, 02:43 PM
 
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Hi DBZ-

We take water therapy at the County Board for DD/MD. It is a therapy pool disigned only for kids with disabilities. Not sure if you have something like that where you live but if so it would be worht seeing if they are more flexible.

We tried a brace that was made for him to keep his hand open but he can get it off. We will be looking at them again when he is older and able to understand frustration a bit more. His PT is also considering casting his dominant hand eventually as well. Again when he is older.
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