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Old 07-27-2009, 03:31 PM   #1
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savien HB User
Angry Ive just been told my 10mth old has cerebal palsy :(

Can anyone help me? i dont know what to do/think or turn to!!
My wee man is 10nths, doesnt sit roll etc, his feet are a strange shape and dont bend! he cant straighten his legs fully either, im a wreck!!!
we went to see the surgen to see if he can fix his feet, he said its not his feet that are the problem, its his brain damage! i was stunned, i had no idea, he then said. You are aware he has cp.........I SAID, WELL I DO NOW!!!!!!!!
Not going to see the pedeiatrition until november! what do i do in the meantime?
Nobody see to care, they have just left us in limbo, with nobody to talk too.
please help
savien x

 
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Old 07-28-2009, 07:32 AM   #2
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Re: Ive just been told my 10mth old has cerebal palsy :(

If he has cp..i would consider asking his surgeon if he or she can recommend you to someone who can help you understand more about CP. CP affects one side of the body, rendering it unable to function normally at first, but gradually over time and with the help of therapy, it can start to function. dont be afraid to ask his surgeon questions. i mean..bombard him with questions until he can recommend you to someone. If your son's legs arent functioning right..if they cannot support him properly, I would suggest asking his surgeon to recommend you to someone who can help you find leg braces..they might help. I hope this helps...

 
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Old 08-01-2009, 08:44 AM   #3
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Re: Ive just been told my 10mth old has cerebal palsy :(

Well, CP doesn't always affect one side of the body. CP is caused by brain damage that occurs before, during, or shortly after birth (because of a multitude of reasons, or sometimes for no discernible reason at all). The location and extent of the brain damage determines its effects. One thing that is certain, however, is that the brain of people with CP doesn't control one's muscles correctly, leading to overactivity and in your son's case, I think, spasticity or tightness. The muscle tightness is likely the reason he can't straighten his legs, and it probably pulled his feet into the abnormal shape.

That said: there are things that can be done--medicine, braces, physical therapy, and later possibly surgeries--to lessen and counteract this. But it was EXTREMELY WRONG for that doctor to 1). just drop the diagnosis on you like that when he should have known by looking through the case history and talking to you that you weren't aware of the CP, and 2). not give you any kind of resources, referrals, or a next step to take. I don't blame you for being upset.

As for what to do, well if I were you I'd want to talk to a reputable and appropriate doctor about the situation ASAP, and get a definitive diagnosis. In my opinion, considering the circumstances, a good pediatrician should fit you in for an earlier appointment if you call and explain the situation. If that doesn't work (or perhaps even if it does), I would also contact a local United Cerebral Palsy office, if there is one* inappropriate website link and related information removed by hb-mod, moderator *

The important thing is, to get a diagnosis and talk to a doctor who knows what he/she is doing (unlike that first one you saw!). If either of the two things above do not work, look in the phone book for a (pediatric, if possible) neurologist and start calling them/explaining the situation/attending appointments until you get help.

Good luck--keep us updated!

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Old 08-04-2009, 08:52 PM   #4
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Lightbulb Re: Ive just been told my 10mth old has cerebal palsy :(

Your son needs testing. 1st thing....... Find out what kind of cp he has. Does he have c on one side or all limbs. As far as 10 months, does he do other things that 10 months olds do? Talk etc? Do not think about any surgery right now, his bones are growing right now. Concentrate on physical therapy. He needs a lot of stretching right now. Do not blame yourself for this. TaKE one day a time. Sttay positive and keep your faith!! Stay strong!

 
Old 09-10-2009, 09:33 PM   #5
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Re: Ive just been told my 10mth old has cerebal palsy :(

Oh wow I can't believe the doctor just lumped you with a diagnosis like that and didn't give you any more info or tell you where and how to get support.

My little one was about 8mths old when I first knew there was something wrong, but she was my 5th child so I knew early, even the Maternal Child Health Nurse didn't pick it up. I googled 'stiff legs' and CP came up and I knew then and there that's what she had, our GP agreed. She then put us onto a physiotherapist to get the stretches started while we waited to get into the public system. Australia has a fantastic public system.

At first we were told that her CP was diplegic and only mild, but now that she's 3 it's been changed to Quadraplegic and Level 4 (severe), in other words she'll probably never walk independently. Although she is extremely bright for her age, can speak perfectly and can do almost anything with her hand's, just 'differently'. She is perfectly normal in every way, except her little body doesn't function like 'normal' children.

Once we got into the Public system, they did an MRI which came back normal, although there is about 15% of kids with CP that have normal MRI's. They also did a full range of metabolic tests, which also came back normal. She has had botox to her hands/wrists and hamstrings, as well as an adductor release (the tendons that pull the legs together) to help stop her scissoring, they also gave her a phenol block (lasts longer than the botox). She is about to have more botox in her hamstrings and calf muscles.

I imagine you are where I was in the beginning, totally in shock and overwhelmed and feeling guilty. It's not easy to get past, but just remember this, your son has a life sentence, not a death sentence. You will become proficient at stretches and adapting to all their needs and therapies. Take one day at a time, I find looking too far into the future is distressing.

In Oz we have Early Intervention Services, they supply all the therapies and are a Godsend with finding funding for aids and equipement as well as being there to cry on and ask advice from. Surely there must be something like that where you live.

Feel free to PM me if you need a chat.

 
Old 09-11-2009, 06:31 PM   #6
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Re: Ive just been told my 10mth old has cerebal palsy :(

You definitely don't need to wait until November to see a doctor again. Get an appt with a qualified pediatrician and get in touch with early intervention services. This is not something you should wait on, or the deformities in the feet may worsen and your little one may start to become uncomfortable from the spasticity (tightness) in his limbs.

I'm sorry you had to learn about the CP the way you did. It must have been so obvious to the doctor that he would never have imagined you didn't already know about it. An honest mistake.

 
Old 12-05-2009, 02:12 PM   #7
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Re: Ive just been told my 10mth old has cerebal palsy :(

i dont know how my parents were when they found out about my brother having cp but i do know it was hard for them and they worked hard to get him the therapy and surgeries he needed he is now 25 and living a great life. i never thought my brother was any different than me or my sister just that he couldnt talk we used to scoot on the floor with him and have races and play like any other kids would. just remember everyone is different in their own way and everything will be ok

 
Old 01-12-2010, 04:51 AM   #8
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Re: Ive just been told my 10mth old has cerebal palsy :(

Hi Savien.

I am so sorry to hear about your little one, but it is not unusual to find out in such a brutal, tactless manner. I remember being told about my own son's cerebral palsy, - The doctor said, "I am afraid Daniel is showing early signs of having cerebral palsy, see you in 3 months." We were then left to go home and look up the meaning of the term for ourselves. The literature is full of such examples.

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Old 01-28-2010, 10:34 AM   #9
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Re: Ive just been told my 10mth old has cerebal palsy :(

I didn't get that speech until my daughter was almost 3. Up until then, we were told she had developmental delays due to her premature birth. She started physical therapy at 3 months, but no one said the "CP" word. Contact your local United Cerebral Palsy organization, if you have one, and see if they can get you names of local physicians/therapist who work with CP kids. The more PT they can get in the beginning, the better. Don't agree to any kind of surgery for a LONG time. Once they cut, you get scar tissue, and it just complicates things. If you can find a hyppotherapy (horse riding) program, it REALLY helps. They actually give the kids therapy on the horses. It is a lot more common now than when my daughter was small. She is 24 now. Go ahead and call your pediatrician, make an appointment and go in to talk to him/her about resources for your child. Never take NO for an answer and don't be afraid to question things. YOU are your child's advocate. Kids with CP are very smart. Treat him like you would any other 10 month old kid. Take him everywhere - even in a stroller. These kids are resilient and can improve over a very long time. My daughter didn't drink from a straw until she was 4! She is severely affected, though. My point is, don't give up. It is a long journey but the kids are worth it. Please contact me at any time. Good luck.

 
Old 01-29-2010, 02:25 AM   #10
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Re: Ive just been told my 10mth old has cerebal palsy :(

hi sometimes the docs need there heads banging together they give you life changin info and leave you to get on with it!my son is now 16 and he wasnt diognosed till he was a year or so.do you have a health visitor?if not asked to be referred.you need a speech therapist ad a home teacher now plus a phsyio see your doc and ask to be reffered ask your health visitor for help join a support group in your area.you need support but your gonna have to ask fr it.it does get easier when you get the right help trust me.I know its hard and right now your probably in shock but start askin for help now.if you want to talk to me about anythin please do I remember the feelings clearly good luck xx

 
Old 02-07-2010, 12:13 PM   #11
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Re: Ive just been told my 10mth old has cerebal palsy :(

The DCSF in UK produces and excellent resource in their Early Support Package. Information for Parents cerebral Palsy - you can get a copy for free or contact SCOPE they provide great support for both parents and children (and adults with CP). Your Health Visitor and local childrens centre should also be able to give you lots of support.

 
Old 03-09-2010, 08:25 PM   #12
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Re: Ive just been told my 10mth old has cerebal palsy :(

i have CP an im 16

i only have mild spastic diplegia[?] so im not that bad apart from a scarred voice-box

i just wanted to say that i didnt walk til i was something like 3 an i used to get carried round like a doll but that changed quickly so be prepared [i know its ages away] also i'm talented at writing so try to get him interested in stuff

have faith -cyber hugs-

 
Old 03-16-2010, 08:01 AM   #13
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Re: Ive just been told my 10mth old has cerebal palsy :(

Hi Savien

Unfortunately we are worlds apart so i cant refer you to the services in your area but i can be here for support!

Our biggest problems is that doctors arnt as sensitive and helpfull, when it comes to issues like these, as we would like them to be.

The important thing is that your child start receiving Occupational/physio Therapy as soon as possible! Unfortunately this conditional is not curable but he could develop much more if he receives the neccesary therapy from a very young age.

Hope to chat to you soon,
Lauren

Last edited by moderator2; 03-16-2010 at 11:23 AM. Reason: posted contact info - please read the posting rules

 
Old 03-29-2010, 10:07 AM   #14
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Re: Ive just been told my 10mth old has cerebal palsy :(

Hi. I have an 18 month old son who was diagnosed with cp when he was 9 months old. It is very overwhelming but it is possible to deal with. Right now my son see's a physical medicine doctor which will help with spacicity and development, a neurologist, his pediatrician, a physical therapist and the optomitrist. I also have a program through the state that comes out to my house and provides occupational therapy. The best thing to do is take a deep breath and take it one day at a time. Make an earlier appointment with the pediatrician and have a list of questions that you want to ask. Also you might want to find a new pediatrician that specalizes in special needs kids. You are also entitled to recieve social security income for you son to help with the costs. If you have any questions please do not hesitate to contact me.

 
Old 04-03-2010, 05:01 PM   #15
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Re: Ive just been told my 10mth old has cerebal palsy :(

You mean there wasn't any birth trauma? Normal birthing and baby appreared to be completely normal at birth? Who gave your child a diagnosis of CP? Are there any other signs of disability or developmental delay? Get a referal and a complete exam by "specialists", including an orthopedic, developmental pediatrician specialist, etc... if by chance there is more to it, the earlier the intervention, the better. Hope it all goes well. Good luck!

 
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