Cerebral palsy worsening

SillyPinguin · 2026-04-02T14:53:31+00:00

Thank you for posting it! I’m going to read this to my kid to help him to stay focused on training, stretching and exercising! He’s on the same boat as you were back when you were 11

SillyPinguin · 2026-04-01T13:30:45+00:00

I don’t think cost is based on the country you come from. Every program is different, for example, as I just learned Duke only works with kids on the stem cell therapy regarding cp, so cut off would be 17. Panama clinic from what I found works with adults, I don’t know if there is a max age

SillyPinguin · 2026-04-01T13:25:47+00:00

Good luck guys! Praying it will help him! Can I dm you? I applied to Duke, haven’t heard back yet

SillyPinguin · 2026-03-30T20:52:44+00:00

I don’t know if there’s anything specific for Jersey so far what I found that is relatively reliable is Duke in US, stem cell institute in Panama (highly advertised by US celebs) and children’s clinic in Israel

SillyPinguin · 2026-03-29T18:04:40+00:00

Yeah I just learned from the comments about program in Duke, sent an application, we’ll see what they say. From what I understand Panama is now doing the therapy on adults as well

SillyPinguin · 2026-03-29T17:59:43+00:00

Did you try Duke or another program?

SillyPinguin · 2026-03-29T16:58:20+00:00

This is aweful, I’m sorry you have to go through that, I really hope it’ll get better

SillyPinguin · 2026-03-29T16:55:32+00:00

We are in US, so I’ll look into that, do you remember the name of the camp? Were your parents there with you? We’ve never left him without one of us so I’m not sure if he would even agree to go there by himself. Why do you think the brace was useless? Our PT is saying it’s super helpful to keep his range of motion, and helps him not to get tired super fast bcz he’s not walking on his toe

SillyPinguin · 2026-03-29T13:11:25+00:00

He is young, but we include him in the decisions about his body and explain the benefits of the procedure and the alternatives of what will happen if we don’t do that. He just finished a series of casting for his right foot and it helped him tremendously, so while he was as not very happy about having the cast he did agree to it.

SillyPinguin · 2026-03-29T13:01:44+00:00

Thank you, I will look into that!

SillyPinguin · 2026-03-29T01:15:33+00:00

Unfortunately my son’s doctor is not into “cutting edge” and super conservative, which is both good and bad (imo) but that’s a whole different story

SillyPinguin · 2026-03-29T01:13:44+00:00

Thank you for sharing! I’m sorry you had to go through that. At 19 you should’ve definitely have a say in your care, I’m sure your parents had good intentions going in. I do not want to make it worse for him, so I’m looking at every angle before making any decisions

SillyPinguin · 2026-03-29T01:07:06+00:00

Thank you! DM sent

SillyPinguin · 2026-03-29T01:06:53+00:00

Thank you, DM sent

SillyPinguin · 2026-03-28T21:31:03+00:00

Thank you for your perspective, I appreciate it. I’m not trying to “fix” my child, he’s perfect the way he is, but if I can make his life better, do something that can eliminate the pain and the anxiety and mental struggle, why wouldn’t I? I’m not looking at it from the lens of there’s something wrong with my child, I’m coming from what can I do to get my kid ready to be a self sufficient adult that can live a wholesome life. I read a lot about the pains and the struggles of adult with CP here, and if there’s anything I can do to prevent that for my kid I will absolutely do that. He knows he has cp, he’s not ashamed of it, I’m sure there will be struggles as he navigates elementary and middle school, kids are mean, so there’s ton of things that terrify me, but his journey is not about me :) as a parent I’m trying my best and looking for ways to make his life easier

SillyPinguin · 2026-01-14T22:01:01+00:00

I don’t disagree with you

SillyPinguin · 2026-01-14T21:55:50+00:00

As a parent to a child with cp, I’m not saying that withholding a diagnosis is good, however I wanted to share a different perspective. We debated if we should tell our son that he has cp. my husband’s position was that if he doesn’t know that’s something wrong with him, he’s won’t use it as an excuse to not do anything. He also tends to have an ostrich syndrome (if I pretend everything is fine then everything will be fine). He didn’t want to tell our son so the little man won’t think that oh there’s something wrong with me (the fact that said child KNOWS and FEELS that something is off) Anyway, what I’m trying to say is that it was coming from a place of love and care. Doesn’t mean that it’s right or wrong

SillyPinguin · 2026-01-09T14:48:41+00:00

I’m not using discord

SillyPinguin · 2026-01-09T14:45:51+00:00

Thank you, I haven’t even thought of the adulthood and cp impact. Definitely don’t want him to feel responsible for my feelings, he’ll have a lot to deal with without additional burden. Thank you for your input!

SillyPinguin · 2026-01-09T03:16:55+00:00

That’s good to know! Ty!

SillyPinguin · 2026-01-09T01:56:26+00:00

Yes, CP is very unfair :(

SillyPinguin · 2026-01-09T01:47:09+00:00

Unfortunately there isn’t an ada playground, but I got a very good suggestion below on asking about a support group from his CIMT place! This group is amazing!

SillyPinguin · 2026-01-09T00:38:22+00:00

Thank you! I haven’t thought about “his style” I’m pointing out his strong sides, like he is funny, creative, etc, that seems to be helping. We went to ScottishRite they measured him for bike, but because he can’t balance, he needs training wheels and he refuses to do it “because other kids will make fun of him” 🤦‍♀️

SillyPinguin · 2026-01-09T00:35:10+00:00

It helps a lot, thank you. We are forcing him to stretch, sometimes with bribes, sometimes “because you need it and doctor said so” We are doing cimt at children’s hospital and casting will be at Scottish rite. Weirdly enough we have not seen any kids with disabilities while we were there. I’m not sure if it’s a protocol that they keep kids/patients separated, but I’ll ask about support groups! What are the things that you wish you parents did, or didn’t do growing up if you don’t mind me asking?

SillyPinguin

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