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Thread: Cerebral Palsy

  1. #1

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    Default Cerebral Palsy

    Am unsure whether there are any members of BB with children suffering Cerebral Palsy, but thought this may be helpful to those who do have or know of children suffering this terrible disease...

    There has been recent successes in treating it with Botox, as was seen on 60 minutes.

    For the parents, it's nothing less than a miracle. And you'd think so too if one day your disabled child stood up and walked for the very first time. Even more amazing though is the wonder drug responsible. It's botox, yes botox, that terribly fashionable cosmetic treatment. Now, it has a much more serious application, hailed as the most significant breakthrough in the treatment of cerebral palsy in 20 years. As you'll see, young children once condemned to life in a wheelchair now have a real chance — the chance to walk.
    Thought it might give some hope to those out there that may need it...


  2. #2
    katanya Guest

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    Keen sorry to get PC on you, but I work with Children/adults with a Disability and it is offensive to say "suffers with " when refering to CP or other disabilities..also it is a disability or condition not a "disease" diseases can be healed, a disability is something that is usually there for life..I have to play the advocate because I used to work with Adults who have Cerebral Palsy and they formed a disability advocacy group that targeted media reports using these terms.. O So everytime I read it I want to write in and say something..

    The report is absolutely wonderful, I have heard of it, but unfortunately with the many adults and children that I work with the benifits wouldn't be as significant as with young children.

  3. #3
    katanya Guest

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    okay the reason it sounds offensive is that you are assuming that a person witha disability like CP and other disabilities is "suffering" people with a disabilty like to be seen as a person first and the fact they have a disability as a subsiquential part of their person..

    I would say "a person who has Cerebral palsy or a person with cerebral palsy", no need to say anything else.

    Not trying to lecture but it's something I just think of automatically having had worked in the disability industry for 8 years..

  4. #4

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    My nephew has cerebal palsy.
    His mother is an occupational therepist and he has been having botox injections for years at 6 month intervals.
    His condition has a few other complications as he had a quite serious brain bleed.
    But to look at him today he is a healthy 8 year old that plays soccer and
    a musical instrument (badly but getting better lol). Somethimes when he is tired you can notice a limp and favoured side, but as far as the muscular tightening with intense excerises and botox he is very active.
    "All our little stars shine"

  5. #5
    katanya Guest

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    that is really great to hear that it has been working so well, unfortunately as the issue is in the messages sent from the brain, not the limb itself, the problem would need constant treatments in order to work. Having seen the full range of how cerebral palsy affects a person, it is wonderful that they have finally discovered something that even reduces the effects of the palsy.

  6. #6

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    of course it was not my intention to offend anyone, and it had not even entered my mind.

    The whole intention of my post was only to bring the new treatment possibilities to light. Like I said, I dont know anyone with it and I just heard that this treatment was showing some great results and wanted to share it with you all.

  7. #7
    katanya Guest

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    sorry Keen wasn't infering that you were 8-[ , it's just language that the media uses all the time which is actually incorrect, I just replied on instinct, afterwards I actually worried whether you'd take it personally.

    You can't know these things unless people point them out I guess, which I have done rather undiplomatically..sorry :flower:

  8. #8

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    no worries

    i guess the terminology comes from my psyc training where we are taught to say things like that to suggest that the person is not the disease but rather has it IYKWIM?? eg a person suffers from schizophrenia, rather than is schizophrenic. But that clearly doesnt work in all cases, so I now see.

  9. #9

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    Hi. When I was pregnant with my son, I was a frequent 'reader' (not too many posts ). I haven't really been around for a while, however I am thinking about another baby and have just begun to open up the forum to read again. I saw this post and thought I would add my bit.

    My son is perfect, an adorable little boy and an infectious fun and happy personality. He is a quiet and very content, but loves to be around others. He really was a dream baby and made it easy for me to be a first-time mother - hope any future children are as kind to me!

    In April, I went to see my paediatrician to get some exercise to encourage movement of his right hand, and was told that he has infantile hemiplegia, which is a form of cerebral palsy. He was 9 months old. Turns out he had a stroke before he was born, while hanging around in the womb minding his own business, and it affected the motor control of his right side.

    There are a lot of positives, for one, there was no intellectual damage. He will walk, but only when he is ready and with assistance. Over the years he will make great improvements and be hopefully able to use the right side, but will always favour his left side. We are very lucky to be given such a beautiful wonderful boy.

    He was born a bundle of joy, a perfect bag of skin and bones, we were in love (and still are!). It is quite a shock, very emotional, and difficult to hear, that your beautiful boy has a disability - something you think about in pregnancy and hope never happens to you. It did, and it does.

    We will do everything we can to help his development, however I have no doubt he will live a great and loving life. Maybe one day we may use the Botox, however I have no idea. It is a big learning curve for me, and we are taking each day/step at a time. My son and I meet with a couple of people from the Queensland Cerebral Palsy League next Friday, and I am looking forward to it - excited to hear about our future.

    Just wanted to share my bit. Have a bewt day!
    Gail

  10. #10

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    Gail

    Thanks so much for sharing your story with us. Your little boy sounds wonderful. I hope your meeting with the CP League is everything you expect it to be and more

  11. #11

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    Gail - sounds like you do have quite a brave and wonderful little man there. And you also sound as though you are a very strong woman - to which he is grateful, Im sure.

    Best of luck with everything.

  12. #12

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    You have got yourself a great little man there. You sound very positive and thats a great thing. I have found that to be the best for myself and Alana. Good luck and keep us updated with his progress.

  13. #13
    katanya Guest

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    Hi Gail, I used to work for the Cerebral Palsy League of Queensland, hope things go well for you!

    I have worked with a family who'd son also had a stroke in the womb, they call him the youngest stroke patient in queensland he is now 12, and has a mild CP, but his impairment is mostly intellectual.

    All the best to you, if you'd like any links to services or advice from my expereince as a support work with children with a disability please ask, seems like you are heading in the right direction!

  14. #14

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    I have a feeling that the results you might see from Botox would depend on the severity of Cerebral Palsy. My brother has Celebral Palsy and is in a wheelchair even though we did our best with the Conductive Education programme and other exercises for many years. Recently he was given a trial using a "Motor Med", kind of like an exercise bike, but you stay in your wheelchair and just strap your legs in. It's certainly freed up his muscles a lot and given him more movement.

    I guess what I'm saying is that there are many forms of Cerebral Palsy and although many children do end up walking, it's unlikely that my brother will be one of them.

    On a more positive note, my brother is never in a bad mood and has the most fantastic sense of humour. He is a delight to be around and seems to make friends with everyone!

    Gail - I imagine everything is a little overwelming at this stage. I would recommend finding a Conductive Education programme (or something similar) in your area...that said, I'm sure the Queensland Cerebral Palsy League has a wealth of knowledge and will know the best places to go. It's good to hear that walking is a high possibility. I hope the medical professionals you deal with are a support to you too.

  15. #15

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    Just wanted to say to blue-Hebe and IanAida thanks for sharing your journeys with us.
    Blue - your brother sounds like a treasure.
    IanAida - hope the new therapies work out well for your little boy.

  16. #16

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    IanAida - some Doctors can say really unhelpful things can't they? My parents were told the same thing along with "well I'm glad he's not my child"....Most Doctors are wonderful, but they certainly don't know it all...As Christine mentioned, it's great that things are working out ok for you and your son. I don't know much about Hyperbaric Therapy, I'd be interested to know how it goes.

    Christine - yes, my brother certainly is a treasure! I really can't imagine life without him. He's really funny when I get to talk to him on the phone (he has limited speech, but enough to hold short conversations). When I first moved away from home he used to shout down the phone - I guess he figured I was a long way away! Now he's learnt to talk a little quieter, but sometimes when Mum phones me and puts him on first, there's absolute silence on the other end :P It can take a while for him to actually start talking Ah well, all good fun and now I'm rambling, so I shall sign off!

  17. #17
    ozchicki Guest

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    Hi! I am brand new to the forum, but only came through a link about CP to here. My little boy has mild hemiplegic spasticity (left side) and seemed "normal" until around 5 months old. I noticed he wasn't using his left hand much. I went to the GP and he said that there was nothing wrong with him, he will just be right handed. I went to the child health nurse (god love them!!) and voiced my concerns. It was she who told me to get a referral to a pediatrician.

    We did that, DH went to the appointment- I had just started back teaching full time and couldn't make it. When I got home from school, I asked how the appointment went. DH told me to sit and told me that it appeared that TJ had cerebral palsy. I burst into tears and grabbed my little boy (now 8 months old) and cried and cried. All I knew of CP was the comedian "Steady Eady" (who I actually found very UNfunny). TJ had to go have his MRI in Brisbane (we are in Toowoomba) and again I cried when they put him under the anesthetic.

    The MRI showed that he had a small danamge to his brain and was probably caused as a small stoke while in the womb (like a previous posted). Great...now I was blaming myself. What had I done wrong while pg? Was drinking that coke what did it?

    We returned to the pediatrian and he explained it all to us and assured me that I could not have done anything wrong. As TJ was born by elective c-section (my first was an emergency and I didn't want to go through that again), his delievery was untraumatic and did not cause the CP. He referred us to the CP League. He said that TJ's CP is mild and he will probably only have a small limp by the time he goes to school.

    CP League in QLD have been a god send. We have had on-going OT for TJ through there and some physio (it is hard to fill this position in Toowoomba).

    The end of last year, we were told about CP Health (at Royal Children's Hospital) in Brisbane which is a gov funded ward. They do botox, give OT, phsyio etc. We made an appointment and went at the beginning of this year.

    9 days before TJ's 3rd birthday, he received his first botox injections (4) into his calf and is in a "Thumb's Up" study where they were looking at whether the effects of botox in the thumb is worthwhile. This is because the gov hadn't approved upper limb botox as yet. While he was getting his leg botox, he was also injected (under general) with either botox or a placebo in his thumb. They cast his arm out so his thumb would stuck out for a week (every kid had this done) and then we had a ho,e program to follow. He just had his follow up appointment (6 weeks after) and they OT and Dr are guessing he was one of the 50% who didn't get botox in his thumb. Great news though...gov has just approved upper limb botox in the last few weeks. He returns to get his next lot of botox at the end of the year and they will look at doing his arm for real this time!

    He has an AFO on all the time, we have a resting splint for his hand which we put on him while he is sleeping and we do a lot of stretching and OT activities. He is getting there! We were desperate for him to walk and he did- a month before his second birthday.

    He really is the happiest little man and such a cutie. He has all his teachers (daycare and swimming), drs, OTs and phsyios in love with him.

    Wow...that was rather long. I was only coming on to say "YES, MY SON HAS HAD BOTOX" and look what happened.

    If anyone has any questions about the boto or CP, I am more than happy to chat!

    Angie

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