As someone with CP I honestly hate when parents are trying to “fix” their child. Kids with CP and adults can live for filling lives. Quality of life for disabled children does not mean walking or talking. It means having a safe and loving environment for them to grow and be proud of their disability in a way that they don’t believe they are a burden because of their disability. Disability is something that doesn’t need to be cured. Another quality of life is their mental health how can do things if they are depressed or have anxiety. So no i don’t think stem cell is worth it. And make sure to teach your child that their disability is nothing to be ashamed of. Honestly CP has given me a lot of opportunities. I do some public speaking for different stuff and honestly i don’t think i would be doing that or as confident if i didn’t have CP. Whether they walk or talk is something that the future holds. You should focus and building a loving relationship because people with disabilities in general are more prone to get PTSD. Thanks for coming to my ted talk!
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u/abayj
We are actually going to be going to Duke in the US for our second round next month. We got so many benefits from the first round. We got mood regulation [he was a very fussy baby], better eye tracking, some babbling, and arm movement. We also do a ton a therapy, so that helped too but I feel like the stem cells gave him a boost he wouldn't have otherwise gotten. Highly reccmonend an intensive therapy program after for PT and OT. Was super helpful as well.
Also though, as I tell all parents, go in with the mind set it is a therapy. It isn't going to effect every child the same and you may see more or less gains then another parent. But as long as you go to a reputable clinic and it is safe, I think it is a wonderful resource!
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u/JAW402
We are currently down in Panama getting his first treatment. He will be 2 on Saturday. We got denied for the Duke trials, and yes it's expensive.
He has CP from congenital CMV, along with a couple other issues.
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u/Ebronstein
I live in New Jersey and I'm trying to get any info I can on stem cells. Does anyone know anything? ?
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u/WatercressVivid6919
Have you tried posting this in the Discord server?
https://discord.gg/tEuptRdKDz ?
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u/bob-the-licious
And since we are all here - any recommendations around PHX for stem cell practitioners? We have our stem cells banked for the kiddo but our doc retired. We have a ton of therapy in PHX in July and would avoid flying around (coming from Belgium and all). ?
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u/Dark_Rottie18
I tried to apply quite a few years ago but at the time they were only taking children, not adults. Which makes sense, but still.....😡😡
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u/curious-dev199
Can someone please share some light on the cost it takes for someone who is not in the US for this treatment? Also what's the max age this treatment is done? Thanks in advance! ?
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