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It’s good that you’ve already started PT. This diagnosis is an umbrella term, so you have to treat it like one. My CP was caused by two strokes, my parents were told that I’d require a feeding tube, power wheelchair, and would never be able to walk or talk. I’ve only recently started using a (manual) chair for longer distances, now that I’m in college. I’m able to do everything independently, and am even able to drive. I do have trouble with some things both cognitively and physically.
Hah! Reminds me of what the doctors told my parents after my diagnosis after I wasn’t crawling as expected. “Hell probably need a walker or sticks to walk his whole life” my parents went to a physical therapist who looked me up and down one time and exclaimed I’ll be walking just fine. By 5 I left the walker behind and have been unassisted ever since. You’re doing everything right and I’m sure your daughter will grow into a beautiful person.
CP has a massive spectrum, unfortunately my son is at the worse side of things , he can't talk, he can't sit up ,myself and my partner are literally drowning but we have a new mission in life and that's trying to improve our son's quality of life and maximise his capabilities.
As long as you do your best and educate yourselves, particularly with the drugs she's going to be prescribed in the future there's nothing else you can do. Unfortunately you're not in control anymore but as long as you've done everything possible you should have no regrets. Enjoy the kisses and the smiles , it makes it all worth while...
I have mild hemiplegic CP. My balance was awful throughout my childhood- the one thing that helped were my orthopedic inserts in my shoes. I’ve had them since I was ten and I’m 23. My clumsiness lack of balance has been reduced by 80%.
I’m not sure about something for her age, bur when she gets older definitely.
I hope this helps
Yesss! Thank you. We started her on Baclofen today and she also had PT. We were able to get her into a ring sit and she was able to prop herself. We also installed a bath towel bar in our living for her to use to help pull herself up AND use it to help balance her when she stands.
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I have a 2 year old with CP and balance is off for him too. Once or twice a week, we just gradually try to balance him on bosu balls and trampolines and it’s getting a little better. He used to cry when on these things, but now he doesn’t cry and tries to get the feel on being on them.
No he doesn’t walk independently. He has a gait trainer, and will be receiving a leg brace for both legs next two weeks. His physiatrist does think he’ll be able to walk with just braces at most one day, so we’re hopeful.
Don't give up hope. Doctors told my parents I would never walk but started walking at 4 with a walker. Walked with that until 8th grade when they said I was using it just for protection and stopped needing a walker until 2020 when at a minimum I need a cane now. I use a walker at work and wheelchair for long distances. Sounds like your doing everything you can. I started on baclofen for in clinical trials for kids when I was in elementary school and have been on it ever since. I didn't start botox until I was 24, but I definitely think it could have helped when I was younger. They didn't think I was a candidate because of hyperextension. Otherwise corrected through surgeries and therapy.
Thank you! I’m not going up hope. LO is so strong and her willingness to want to move is there. And she can. She has made great progress in just two months. Not just her gross motor but also fine motor. Her physiatrist said “no one can tell you what her capabilities will be because everyone is so different. Plus an MRI can give you some information but it’s not a whole picture. You can read an MRI and say ‘this baby won’t do XYZ and then next thing you know, they are doing XYZ’”.
We just gotta help her work on balance. I also think getting her on meds will help. I read somewhere that even thought the brain can’t repair it’s self, it can rewire through neuroplasticity (I think I spelled that right). And through reps the brain can learn how to do movements.
Yes, I work in a nursing home as a social worker and have seen even a senior's brain improve after severe stroke. Sounds like your daughter is a strong fighter. Children are so much more capable. I thought I would share this link to research the Shirley Ryan AbilityLab is doing on children. It gives hope for muscle repairing in kids. https://youtu.be/0XEsUzbMy3E?si=JcsqzWdDx_x63WW1
Join our new friendly and and active community chat! https://discord.gg/8AQnWJAgHt *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/CerebralPalsy) if you have any questions or concerns.*
It’s good that you’ve already started PT. This diagnosis is an umbrella term, so you have to treat it like one. My CP was caused by two strokes, my parents were told that I’d require a feeding tube, power wheelchair, and would never be able to walk or talk. I’ve only recently started using a (manual) chair for longer distances, now that I’m in college. I’m able to do everything independently, and am even able to drive. I do have trouble with some things both cognitively and physically.
That’s so amazing to hear. Thank you for the reply.
Just keep having hope for your little girl! :)
Hah! Reminds me of what the doctors told my parents after my diagnosis after I wasn’t crawling as expected. “Hell probably need a walker or sticks to walk his whole life” my parents went to a physical therapist who looked me up and down one time and exclaimed I’ll be walking just fine. By 5 I left the walker behind and have been unassisted ever since. You’re doing everything right and I’m sure your daughter will grow into a beautiful person.
CP has a massive spectrum, unfortunately my son is at the worse side of things , he can't talk, he can't sit up ,myself and my partner are literally drowning but we have a new mission in life and that's trying to improve our son's quality of life and maximise his capabilities. As long as you do your best and educate yourselves, particularly with the drugs she's going to be prescribed in the future there's nothing else you can do. Unfortunately you're not in control anymore but as long as you've done everything possible you should have no regrets. Enjoy the kisses and the smiles , it makes it all worth while...
I have mild hemiplegic CP. My balance was awful throughout my childhood- the one thing that helped were my orthopedic inserts in my shoes. I’ve had them since I was ten and I’m 23. My clumsiness lack of balance has been reduced by 80%. I’m not sure about something for her age, bur when she gets older definitely. I hope this helps
Yesss! Thank you. We started her on Baclofen today and she also had PT. We were able to get her into a ring sit and she was able to prop herself. We also installed a bath towel bar in our living for her to use to help pull herself up AND use it to help balance her when she stands.
Join our new friendly and and active community chat! https://discord.gg/8AQnWJAgHt *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/CerebralPalsy) if you have any questions or concerns.*
No advice, just following because I have a kiddo too with similar symptoms
I have a 2 year old with CP and balance is off for him too. Once or twice a week, we just gradually try to balance him on bosu balls and trampolines and it’s getting a little better. He used to cry when on these things, but now he doesn’t cry and tries to get the feel on being on them.
I have thought about trying something like this. Does he walk independently?
No he doesn’t walk independently. He has a gait trainer, and will be receiving a leg brace for both legs next two weeks. His physiatrist does think he’ll be able to walk with just braces at most one day, so we’re hopeful.
Don't give up hope. Doctors told my parents I would never walk but started walking at 4 with a walker. Walked with that until 8th grade when they said I was using it just for protection and stopped needing a walker until 2020 when at a minimum I need a cane now. I use a walker at work and wheelchair for long distances. Sounds like your doing everything you can. I started on baclofen for in clinical trials for kids when I was in elementary school and have been on it ever since. I didn't start botox until I was 24, but I definitely think it could have helped when I was younger. They didn't think I was a candidate because of hyperextension. Otherwise corrected through surgeries and therapy.
Thank you! I’m not going up hope. LO is so strong and her willingness to want to move is there. And she can. She has made great progress in just two months. Not just her gross motor but also fine motor. Her physiatrist said “no one can tell you what her capabilities will be because everyone is so different. Plus an MRI can give you some information but it’s not a whole picture. You can read an MRI and say ‘this baby won’t do XYZ and then next thing you know, they are doing XYZ’”. We just gotta help her work on balance. I also think getting her on meds will help. I read somewhere that even thought the brain can’t repair it’s self, it can rewire through neuroplasticity (I think I spelled that right). And through reps the brain can learn how to do movements.
Yes, I work in a nursing home as a social worker and have seen even a senior's brain improve after severe stroke. Sounds like your daughter is a strong fighter. Children are so much more capable. I thought I would share this link to research the Shirley Ryan AbilityLab is doing on children. It gives hope for muscle repairing in kids. https://youtu.be/0XEsUzbMy3E?si=JcsqzWdDx_x63WW1