savien
07-27-2009, 06:31 PM
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:dizzy::dizzy::dizzy:
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:dizzy::dizzy::dizzy:
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Administrator
07-27-2009, 07:27 PM
This was moved to the Cerebral Palsy Board.
Wolfie123
07-28-2009, 10:32 AM
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...
Steffers2318
08-01-2009, 11:44 AM
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! :)
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! :)
rauljoni
08-04-2009, 11:52 PM
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!
Leaciesmum
09-11-2009, 12:33 AM
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.
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.
Brocallie
09-11-2009, 09:31 PM
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.
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.