Comments for Cerebral Palsy Child http://www.thecpchild.com A Mom's Perspective Fri, 02 Dec 2011 10:30:34 +0000 hourly 1 http://wordpress.org/?v=3.1 Comment on We want to hear by Jen from Australia http://www.thecpchild.com/we-want-to-hear/comment-page-1#comment-2455 Jen from Australia Fri, 02 Dec 2011 10:30:34 +0000 http://www.thecpchild.com/?p=3#comment-2455 Ann, I don't think that ANY parent is perfect! We all do the best we can. I have 2 NT children with no disabilities, but I have 2 friends and a family member with autistic children, and my best friend in school has severe CP (can't walk, talk, feed himself - but his smile lights up the room, and he can answer yes/no questions and laugh at my crappy jokes!). You're a brilliant advocate for your son, and always put his best interests first. That makes you a brilliant mum. Ann, I don’t think that ANY parent is perfect! We all do the best we can. I have 2 NT children with no disabilities, but I have 2 friends and a family member with autistic children, and my best friend in school has severe CP (can’t walk, talk, feed himself – but his smile lights up the room, and he can answer yes/no questions and laugh at my crappy jokes!).
You’re a brilliant advocate for your son, and always put his best interests first. That makes you a brilliant mum.

]]> Comment on What Have You Tried by Monika Stern http://www.thecpchild.com/what-have-you-tried/comment-page-1#comment-2436 Monika Stern Mon, 28 Nov 2011 04:19:06 +0000 http://www.thecpchild.com/?p=1#comment-2436 I like what you guys are up too. Such intelligent work and reporting! Keep up the excellent works guys I've incorporated you guys to my blogroll. I think it will improve the value of my web site I like what you guys are up too. Such intelligent work and reporting! Keep up the excellent works guys I’ve incorporated you guys to my blogroll. I think it will improve the value of my web site

]]> Comment on Heel Cord Lengthening by Farewell from 38.63°N 90.20°W | Georgia's Journey http://www.thecpchild.com/heel-cord-lengthening/comment-page-1#comment-2213 Farewell from 38.63°N 90.20°W | Georgia's Journey Wed, 21 Sep 2011 02:46:22 +0000 http://www.thecpchild.com/heel-cord-lengthening#comment-2213 [...] Dr Park is now suggesting that we need to return in a year’s time to assess the need for heel cord lengthening.  We may be able to avoid surgery with physio and lots of exercise, so we’re preparing for [...] [...] Dr Park is now suggesting that we need to return in a year’s time to assess the need for heel cord lengthening.  We may be able to avoid surgery with physio and lots of exercise, so we’re preparing for [...]

]]> Comment on What Have You Tried by ann121 http://www.thecpchild.com/what-have-you-tried/comment-page-1#comment-2093 ann121 Sun, 14 Aug 2011 23:06:47 +0000 http://www.thecpchild.com/?p=1#comment-2093 My son also had heel cord lengthening at the age of 12. He uses forearm crutches as well. The doctors call it discomfort; it's not discomfort, it hurts. It's like taking your own leg, bending it back further than it normally would be, and then casting it that way. Not all doctors use the casting method, our doctor did. With that all in mind, it was a benefit and I'm glad we did it. The most important thing to note, get at least two doctor opinions to be sure that's what he needs. One doctor wanted to perform the surgery again but a second doctor said he did not need it and it would cause damage. If you do not have a doctor with a lot of experience who has performed this surgery hundreds of times, they can cut the tendons too loose. Your son will be too flexible and it is difficult to fix. I'm giving a realistic answer based on what I studied for my son, but I did go through with it twice and it was worth it. It will allow your son to stand straighter and take better strides. Eventually they could have back issues from their posture. Good luck My son also had heel cord lengthening at the age of 12. He uses forearm crutches as well. The doctors call it discomfort; it’s not discomfort, it hurts. It’s like taking your own leg, bending it back further than it normally would be, and then casting it that way. Not all doctors use the casting method, our doctor did. With that all in mind, it was a benefit and I’m glad we did it. The most important thing to note, get at least two doctor opinions to be sure that’s what he needs. One doctor wanted to perform the surgery again but a second doctor said he did not need it and it would cause damage. If you do not have a doctor with a lot of experience who has performed this surgery hundreds of times, they can cut the tendons too loose. Your son will be too flexible and it is difficult to fix. I’m giving a realistic answer based on what I studied for my son, but I did go through with it twice and it was worth it. It will allow your son to stand straighter and take better strides. Eventually they could have back issues from their posture. Good luck

]]> Comment on What Have You Tried by Jo http://www.thecpchild.com/what-have-you-tried/comment-page-1#comment-2092 Jo Sun, 14 Aug 2011 13:11:22 +0000 http://www.thecpchild.com/?p=1#comment-2092 Hello there, It is nice to see recent post for older children and what they have tried and what works for Spastic CP. My son is 22 and by the time we found out about SDR he was to old for any of the Dr.'s to even think of trying (he was 16 at the time we tried). The Dr's are wanting to do heal cord lengthing and we are afraid. Has anyone heard or seen of someone at his age that has had it done and what the results were. He is mobile with fore arm crutchs and his fear is that it will make things worse and he will not be able to walk. Any advise or encouragment is greatfully appreciated. I wish I had support like this when he was younger. Hello there, It is nice to see recent post for older children and what they have tried and what works for Spastic CP. My son is 22 and by the time we found out about SDR he was to old for any of the Dr.’s to even think of trying (he was 16 at the time we tried). The Dr’s are wanting to do heal cord lengthing and we are afraid. Has anyone heard or seen of someone at his age that has had it done and what the results were. He is mobile with fore arm crutchs and his fear is that it will make things worse and he will not be able to walk. Any advise or encouragment is greatfully appreciated. I wish I had support like this when he was younger.

]]> Comment on We want to hear by ann121 http://www.thecpchild.com/we-want-to-hear/comment-page-1#comment-2067 ann121 Sun, 07 Aug 2011 16:09:00 +0000 http://www.thecpchild.com/?p=3#comment-2067 Sorry for the delay in a reply. Thank you for the compliment. Many individuals tell me they could never do what I do, but they can. When it is your child your perspective changes and there isn't anything you would not do for them. I am far from a perfect mom and I've made many mistakes along the way. I was 21 when Michael was born and he changed my direction in life. He made me a fighter and taught me to never give up. Feel free to mail me at this account and I will be more prompt. :-) Sorry for the delay in a reply. Thank you for the compliment. Many individuals tell me they could never do what I do, but they can. When it is your child your perspective changes and there isn’t anything you would not do for them.

I am far from a perfect mom and I’ve made many mistakes along the way. I was 21 when Michael was born and he changed my direction in life. He made me a fighter and taught me to never give up. Feel free to mail me at this account and I will be more prompt. :-)

]]> Comment on We want to hear by ann121 http://www.thecpchild.com/we-want-to-hear/comment-page-1#comment-2066 ann121 Sun, 07 Aug 2011 15:59:59 +0000 http://www.thecpchild.com/?p=3#comment-2066 Thank you. People don't understand disabilities and how they vary from different individuals. Thank you. People don’t understand disabilities and how they vary from different individuals.

]]> Comment on What Have You Tried by ann121 http://www.thecpchild.com/what-have-you-tried/comment-page-1#comment-2065 ann121 Sun, 07 Aug 2011 15:58:20 +0000 http://www.thecpchild.com/?p=1#comment-2065 Michael had surgery at University of Michigan. When going through the insurance company for authorization, it was a requirement as part of the approval process that the insurance company agreed to pay for Physical Therapy 5-7 days per week for 2 years - it did not fall under any part of our insurance and was an exception. The doctor submitted documentation to the insurance company as well stating they will not perform the surgery without a commitment from the insurance company. We were denied the first time and went through the appeal process and were approved. Give them any and all documentation that the surgery will not work without the necessary therapy. Another child in our area went through the same surgery, did not follow through on the therapy because the family found it difficult to see the child in pain, and found little to no benefit. It is truly a painful operation and it was very difficult watching Michael in so much pain (including the therapy after). But eventually he was able to put on his own clothing and shoes and move better. The most important thing to remember as a mom (and what I struggled with at times) is to know it does not "fix them", but it does improve their quality of life. Good luck. Let me know how it goes and surgery as well. A support system will be very important. Michael had surgery at University of Michigan. When going through the insurance company for authorization, it was a requirement as part of the approval process that the insurance company agreed to pay for Physical Therapy 5-7 days per week for 2 years – it did not fall under any part of our insurance and was an exception. The doctor submitted documentation to the insurance company as well stating they will not perform the surgery without a commitment from the insurance company. We were denied the first time and went through the appeal process and were approved. Give them any and all documentation that the surgery will not work without the necessary therapy.

Another child in our area went through the same surgery, did not follow through on the therapy because the family found it difficult to see the child in pain, and found little to no benefit. It is truly a painful operation and it was very difficult watching Michael in so much pain (including the therapy after). But eventually he was able to put on his own clothing and shoes and move better. The most important thing to remember as a mom (and what I struggled with at times) is to know it does not “fix them”, but it does improve their quality of life. Good luck. Let me know how it goes and surgery as well. A support system will be very important.

]]> Comment on What Have You Tried by Lauren http://www.thecpchild.com/what-have-you-tried/comment-page-1#comment-2033 Lauren Mon, 01 Aug 2011 00:14:43 +0000 http://www.thecpchild.com/?p=1#comment-2033 I came across your site while researching the SDR for my 2 year old daughter who has spastic quad cp.. I very grateful that families Like yours are willing to share your experiences! It helps so much to know im not alone. We were referred to a neurosurgeon for a consult regarding this surgery. She receives therapy 6 times a week as it stands, how were you able to get daily PT after the surgery? Can they classify it as rehab or something similar so insurance will cover it? I'm very nervous about how we will afford the therapy if surgeon does in fact believe she needs the surgery.. I came across your site while researching the SDR for my 2 year old daughter who has spastic quad cp.. I very grateful that families
Like yours are willing to share your experiences! It helps so much to know im not alone. We were referred to a neurosurgeon for a consult regarding this surgery. She receives therapy 6 times a week as it stands, how were you able to get daily PT after the surgery? Can they classify it as rehab or something similar so insurance will cover it? I’m very nervous about how we will afford the therapy if surgeon does in fact believe she needs the surgery..

]]> Comment on We want to hear by Jessie http://www.thecpchild.com/we-want-to-hear/comment-page-1#comment-1851 Jessie Mon, 20 Jun 2011 00:34:01 +0000 http://www.thecpchild.com/?p=3#comment-1851 I'm blind and have other disabilities due to being shaken as a baby by my biological father. I've been told that I can't be blind because I'm able to feed myself. I've also been told that I have to be able to walk a little bit if I'm able to live in my own apartment. Another person said that I can't be blind because I know my way around my home. One man tried to claim that he saw me driving a car but no one believed him. I used to let hurtful comments upset me. Now I laugh at them. I'm glad I found this site. Although I don't have cerebral palsy I enjoyed reading Michael's story. I’m blind and have other disabilities due to being shaken as a baby by my biological father. I’ve been told that I can’t be blind because I’m able to feed myself. I’ve also been told that I have to be able to walk a little bit if I’m able to live in my own apartment. Another person said that I can’t be blind because I know my way around my home. One man tried to claim that he saw me driving a car but no one believed him. I used to let hurtful comments upset me. Now I laugh at them. I’m glad I found this site. Although I don’t have cerebral palsy I enjoyed reading Michael’s story.

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