5 Year Old Daughter Diagnosed with HSP

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  lengel | New diagnosis | published 9 months ago | Originally written in English 5 Year Old Daughter Diagnosed with HSP

  My 5 year old daughter was diagnosed within the last year with HSP. She has spasticity in her legs with weakness in her abdominal trunk and lower calf muscles. She started out not walking, then at 15 months walked with the assist of orthotics.

  She has always had pain in her lower extremities and after Sinemet didn't work she received her botox injections 4 weeks ago, which have helped tons with the pain but her walking/running is still very disorganized.

  I am looking for someone else who has a child diagnosed early on and can tell me how this will progress. I see the words disabling in many of the articles which rips my heart out!
  9 replies to the topic — see all replies

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    Charlex published 9 months ago | Originally written in English

    Hi, my son was diagnosed with HSP a couple of weeks ago after 4 years of thinking it was cerebral palsy, so we're not sure what it actually entails either! He has just turned 6. I'm guessing that every Child is different, my son has never walked unaided and uses a k- walker mainly but can use sticks. Happy to share what's happening wih us, is there an email function on this community page?
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    MariWhite published 9 months ago | Originally written in English

    Hi, our son is now 9 but he was diagnosed when he was 2 with HSP. We have been through much of what you are dealing with. He wears AFO's,, uses Forearm crutches. He has a walker and will use a wheelchair once in a while. We have tried the botox and he has had surgery on his leg tendons. However, with all that said, he does not consider himself disabled. He is positive and happy. To him, the adaptive equipment is no different then me wearing eyeglasses. He is very active in scouts, music, and all other things that 9 year old boys like to do. We don't limit him. We work with his strengths and he stays busy. He loves to play Wii sports because it really helps his balance. He also loves horseback therapy and swimming. All really help his balance. We have never seen him as disabled and so he does not see it himself. The important thing is to keep the legs moving as much as possible and to treat them as you would any other kid, We do not let the disease define who he is. He loves to sing and so is active in choirs and he will start Cello lessons and orchestra since he is now in 4th grade and he loves music. Even if he does need a wheelchair someday it will be a functional thing not a limiting thing. I would encourage you to get involved with the Spastic Paraplegia Foundation, the online HSP support group which is fantastic and find out who your State Ambassador is. We live in Kansas and I'm the Kansas Ambassador. I'd love to chat with you sometime. There are actually quite a few kids with HSP. There are several research studies around for kids and if you can make it to one of the community HSP get togethers and actually meet others like your daughter that really helps. There are those all over the country. If you go to SPF.ORG you can actually see a list of where and when. We are planning the next annual big National HSP conference near Washington D.C. next June and I am hoping to help plan some kid activities. and a kid support group. We try and go to these when we can. I'm not sorry our son has HSP (or my husband). I am a much better person because of it and our son is such a delight (when he is not being a stubborn 9 year old with an attitude). There is much hope out there and a good likelihood of a cure or a treatment in your daughters life time.
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    MariWhite published 9 months ago | Originally written in English

    Charlex, I'd love to talk to you. My e-mail is rwhite46@cox.net. As far as treatment goes, our son has tried Botox and has had tendon lenghtening surgery. The botox really did not work and was pretty traumatic for him but he was also only 3 and 4. They want to try it again and since he is 9 now he might be able to handle it better. He is tightening back up and starting to scissor. If it does not work he is scheduled for more tendon surgery. I've got mixed feelings as a mom because it always weakens him, at least at first. He does horseback therapy, swimming, and loves to play with his Wii system and he now has a trampoline. All help with his balance. We try and find things that are more natural and fun for him -vs- typical physical therapy. He is also active in lots of community activities. He is getting a service dog in a few weeks and hopefully this will help him ambulate even better and teach him some responsibility and independence because it will be his dog completely and we will not be able to care for the dog because he will be trained by Alex. He wears AFO's and uses the forearm crutches. He also has a Pediatric Dashaway walker that he uses at school. He does have a small wheelchair that he can use for those times there is a lot of walking. Feel free to contact me privately. I'd love to talk to you. Mari
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    justin77 published 3 months ago | Originally written in English

    Hi all. My daughter was diagnosed 3 months ago, and I am also trying to figure out "whats next". She can walk un-aided at the moment, but falls over a lot due to her dragging her feet constantly and walking on her toes. We have her seeing a neurologist at the royal childrens hospital, but it would be very nice to meet some parents who are going through this as well.
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    irma published 3 months ago | Originally written in English

    Hi, My daughter was diagnosed with HSP spg 3a, 2 weeks ago. She walks with AFO's but still tiptoes...., drags her feet but hardly falls aymore due to intensive PT
    She just celebrated her 6th birthday and I have many questions about what the future will hold for her and what interventions and sports are beneficial. We live in a small european country and they haven't had a patient her age before. I have read that early onset sets of the disease quicker. Is this true?
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    MariWhite published 3 months ago | Originally written in English

    Our son walks very disorganized. He has always had a gait disturbance and still falls a lot. He has had the botox a couple of times and did have the tendon lengthening procedure when he was 5. He currently races around on forearm crutches and we also just received a service dog for mobility for him. He has a positive attitude and we allow him to do whatever he wants to with his friends and don't limit him because of the legs. He is active in scouts, community theater, and community music groups. He is getting weaker and he does have a wheelchair that he uses part time and he is ok with that. When he gets into bigger schools it may be something he chooses to use more but that will be his decision. I would suggest that you keep her active and let her be a 5 year old. Alex loves to swim and do horseback therapy. He also loves to pay Wii sports and jump on the trampoline all of which help his balance and core strength. He does a little physical therapy but I find that by keeping him busy in the community he gets plenty of natural P.T. and does not feel like he is always going to therapy. Let her be the guide. Mari
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    Charlex published 3 months ago | Originally written in English

    Hi,

    Our son was diagnosed 5 months ago, walks with a walker and sometimes sticks, sometimes uses a wheelchair. Keeping active is great for him in so many ways - he swims, horse rides and is now trying race running! Happy to chat about what he's up to, please feel free to message.
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    MariWhite published 3 months ago | Originally written in English

    I don't know about e-mail for this site but I'm more then glad to e-mail off line. My e-mail is rwhite46@cox.net. We live in Topeka, Kansas. Mari
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    robpleticha published 3 months ago | Originally written in English

    Hi,
    I'm Rob, one of the Community Managers at EURORDIS.

    There is a way to private message someone through this website. First, click on their username, which brings you to their Profile.

    Next, click on Contact, an envelope icon in the upper right hand corner of the profile page. This allows you to send an email to that user's inbox that they used to register on the site.

    Best,
    Rob
    robert.pleticha@eurordis.org