I suppose I am looking for support. My son is 2 and has spastic diaplegia with involuntary movements occasionally. In real terms, he crawls but doesn't walk and the more he moves the shaking and jerks get in his way and frustrate him.
We have got him in for intensive treatment at the Bobath centre in September and this week I have seen, wheelchair services, OT, PT, Consultant, portage and Educational Psyclogist!! My brain is on overload and I don't feel any clearer as to where we're at!! Everyone has different opinions.
And then I feel I have left my daughter out!! Ahhhhh. How do you do it?
I hear you. I know when I first started getting information I felt like my head was going to explode. There was just so much to learn and do. I know we are really lucky that our girl doesn't have alot of other issues on top of her CP (such as speech, visual, hearing, feeding etc).
I know a lot more now than I used to but I'm still learning every day, I don't think I'll ever get right on top of it all. And it seems we can go a month without tonnes of appointments then suddenly they are boom boom boom one on top of the other.
Aleacia is my youngest of 5, my oldest daughter is 27 with 3 of her own so she's not at home anymore but I do have 4 still at home and I do feel like they miss out alot. My oldest son (he's 21) also has a host of problems of his own, an intellectual disability, ADHD, mild schizophrenia, encopresis etc and he is hard work just on his own. Some days I feel like there's just not enough 'me' to go around.
Then there's the surly bitchy grumpy 15yo daughter, I'm sure she would have loved to have been an only child. I feel bad because it's rare that we get 'mummy/daughter' time together. But sorry kiddo, that's just how our life is, suck it up, build a bridge and get over it.
So yep Basswife, I do hear you. Some days I just want to stop the world so I can get off, lol.
I'm behind you as well. There is something therapeutic about getting things off your chest, and this is a great place to do that. We are always here to listen, support, encourage and even hold you hand, if that would help. Feel free to rant and rave if you need to....anything that makes you feel better. We are here for you...and in our prayers.
Yeah it's a mine field alright! Wish I could say it gets easier but it doesn't. Your ability to deal with it gets stronger! My son is 6 1/2 with spastic diplegia.
By involuntary spasms do you mean clonus? My son has that in both feet. Karim started commando crawling at two, and pulling to stand by 3. He can now walk small amounts, like inside the class or around home...still falls all the time but has become an expert at catching himself. We use a mixture of equipment sticks, walker and wheelchair. If I can be of any help let me know. I remember after being diagnosed at 18months there was a distinct lack of people I could turn to to ask random questions.
Thank you KarimsMUM,
I'm not sure what Clonus is? My son used to hyperextend and throw his head backwards. That has translated into his movements being spastic and when he reaches for something his arms move a different way, its difficult to explain without seeing it. His legs although extremly tight don't seem to get this. He commando crawled at 15mths and properly crawled at 21months. He doesn't walk and in the last week (hes 2 1/2) started pulling himself to stand.
Thank you all for your support. x x
Last edited by Basswife; 07-27-2010 at 10:07 AM.
Clonus is an involuntary movement of the muscle caused by too much spasticity. Often sp diplegiacs will have it in the foot/feet but can appear in any muscle affected by the CP. Your sons development sounds similar to my sons. My son had his first walker at 3. We had a kaye walker then moved onto a croc walker.
Very similar. His spasticity for involuntary movements is in his shoulders though, his legs are tight but don't seem to be involuntary.
He got his first walker this year, I'm not sure of its name but its a big frame, with a saddle seat, his physio is trying a light one but he keeps standing on his feet and needs new UFO's before he can use it, his UFO's have little heels at the moment which won't help the waking but did the stretching.
What caused your sons CP? Has he had developmental delay with it? This has added to all the information we've had to cope with. Mind blowing sometimes! I don't know about you but I didn't realise how complicated the body was until it didn't work properly!
Not sure about the cause, he was a 31 week prem but that may or may not have caused it. We may never know but for us the treatment is more important than the cause. When you get a diagnosis of CP you really have throw all milestones out the window. He has had delay with most things although his speech is completely age appropriate. He caught up with that between age 3-4. toileting has been a huge task, we took out him out of day nappies shortly after turning 4 and made the decision not to put him back in them. (really hard for about year) He is night trained but still has accidents on a weekly basis which the school is very good with. As I said he can walk short distances, outside he mainly uses walker or wheelchair depending on distance. We are looking at double hip osteotomy soonish, the first of probably many ops. We have appt with orthopaedic surgeon on Friday to give an indication of when. Karim started Botox at 3, has had several courses in hamstrings and calves. Tightness always is at its worst during growth spurts and during winter months, but hydrotherapy can help and swimming is a great way for them to exercise while having fun.
I know what you mean with coping with undertanding it all. Best thing to do is just ask question if you don't know, if you have a good PT they will take the time to explain and are a wealth of knowledge. Hope this helps, feel free to ask away!!
Amazing your son is so similar the only thing in our boy that is age apropriate is speech which no one can understand but we think is great. Has your son been able to explain how he feels about his CP? We tried potty but at the moment its just too traumatc for him, his legs go stiff when going. We've got time, lots of it.
Thank you for the support, DS was prem too but oxygen starved before that too. We got all the treatment etc in plce long before any diagnosis, but the diagnosis I found helped explaining to others. A relief - that sort of thing. Some people need a diagnosis and others don't - I think I am one who needs answers, I've had to learn to live without some, which is difficult but its amazing how I think these experiences have changed me for the better.
Again Thanks for the support, great to talk to someone who knows where I'm coming from
Yeah know what you mean, i didn't really have anyone to bounce ideas off when Karim was little as the parents I knew(with CP kids) had kids with completely different challenges to Karim. I suspect that his CP may have come from his early birth. My waters broke at 30 w and I held on for 9 days before infection set in and he had to be delivered. I think maybe the signs of infection may have caused it, not sure.
We found standing to toilet just too difficult and so Karim sits. He's ok with that and there may be a time when he wants to stand but he will have to learn how to control his muscles better. All his muscles go into extension when he stands as this is the only stable way for him to stand so he can't relax and pee that way.
Does your son w sit? We found the nada chair really helped him sit with his legs out front and over time after ten thousand reminders he is much better. The nada chair is actually meant for adults to correct their posture at the computer desk. Our pt at the time suggested it. its like a sling that wraps around their back and both feet (instead of an adults knees) and is adjustable. I found it useful when he was sitting watching tv.
W sit! Does he ever, and gettng him to move, well we ask him, he wiggles and ends up back in a W! same if you move him, we have a demand long sitter for it, which he uses with his UFOs.
He has a Lecky potty. It turns into a little chair which he is learning to use his arms to get in and out of it. No way could we think of having him stand, he will sit for all toileting. But so does his dad and there's nothing wrong with him!
He has recently got a Krabat Jockey by R82, for mealtimes. What a difference to the abductor tone!
We have experienced a little boy problem in the bath though - He has a special seat, his abductor tone crosses his legs, and his gentleman parts get trapped! Any ideas for help?