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My son is a special needs toddler who is not walking yet. What can I do at home to help him? Does anyone else have a child with Tuberous Sclerosis Complex that has experienced this?

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Anonymous

Asked by Anonymous at 1:25 PM on Apr. 26, 2010 in Kids' Health

Answers (6)
  • Isn't he seeing a PT who can teach you what do to at home?
    BlooBird

    Answer by BlooBird at 1:29 PM on Apr. 26, 2010

  • Is he receiving any type of physical therapy? If so, you can ask his therapist for specific ideas that would work for your child, as every child's needs are different. How old is he? Do you have a stander for him or a gait trainer? Is he crawling? If not, a crawling frame may help. What is he using for mobility right now, a regular stroller, medical stroller or a wheelchair? Does he have hyptonia or other physical needs? Perhaps a visit with a physiatrist would help, as he may need AFOs or something for additional support.
    Anonymous

    Answer by Anonymous at 3:46 PM on Apr. 26, 2010

  • I don't have personal experience but if you have hippotherapy and it may help your baby. I worked with children with othertypes of issues on horseback and after the first few times of getting used to it, they really seemed to enjoy it. I don't know if it helped with walking or not, many of the children were very seriously disabled with CP but I DO remember one boy in particular who could not sit up by himself, I think he was about 3, after a few months on the horses he gained great strength and could use his arms to pull back and up and over to guide the horse with the reins, it was exhilarating to see his progress.
    mysilentmorning

    Answer by mysilentmorning at 6:15 PM on Apr. 26, 2010

  • Thank you for the responses. He does see a PT. Due to issues with our insurance and the cost it is not as much as I would like. I was looking for ideas to hold me over till his next visit. He is currently using a wheelchair. He does have a stander but he does not like for anything to touch his hands. So he refuses to hold on to the stander. He does crawl but he crawls with his hands in a fist. I really like the horse therapy it is something I will have to look into.
    Anonymous

    Answer by Anonymous at 10:45 AM on Apr. 27, 2010

  • My son had to re-learn to walk twice after his seizures started. We had to find his biggest motivator, (for my son it was food), and we and our PT would litterally dangle veggie chips, (the ones in the shape of french fries), over his head to get him to reach for them and stand. And eventually to take a few steps toward them! It worked for him but it was a long road!
    A friend of mine just had a daughter diagnosed with TSC, her screen name on here is asherraifsmom. You should look her up! :)
    Elyssa414

    Answer by Elyssa414 at 2:14 PM on Apr. 27, 2010

  • anon call your local school district that your zoned for. By law states have to evaluate and offer services to your special needs child no matter of the ability to pay.
    pagirl71

    Answer by pagirl71 at 7:56 AM on Apr. 28, 2010

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