Hi all - my little boy had a hospital appt this week and was examined by an orthopaedic surgeon. He also had x-rays of his feet. He's 26 months old and is so far not able to stand without support and unable to walk too. He's been having infrequent physio for around a year now after his health visitor referred him (he was not sitting up at 1 year.) He did not sit up until around 15 months and didn't crawl until 12 months. He cannot put his left foot flat to the floor unless he has his piedro boots on which he has had for around 2 weeks. He can walk very slowly holding my hands/fingers but only for a short period. The surgeon has referred him to a community paediatrician to confirm what he already thinks - that my son has mild cerebral palsy (spastic diplegia). He said his whole left leg is taut and in 3 months i have to return as he wants to give him botox injections and probably give him a splint or casting. Any thoughts or comments gladly appreciated!
Where do you live in the UK?
If your son is not yet walking you should be getting weekly physio, have an Occupational Therapist and portage. BUT as you will know the UK is a postcode lottery, if you let me know where you are I might be able to put you in touch with support or people to help you get more physio etc in place. This is the key, he's still young so he should respond well if enough input is given.
And your right, I think the Paed will confirm Diaplegia. Push for the diagnosis, because they hate giving things a name or label. Once you have the diagnosis, you'll find other things much easier to apply for. Eg, did you know your entitled to DLA for him.
Hope this helps x x
Actually the orthapaedic surgeon he saw did say mild cerebral palsy - after reading a bit more i think he is probably more hemiplegic than diplegic. It affects his left leg - left arm not so much but he does seem to be dominant on his right hand already (prefers not to use left). Yesterday i collected him from nursery and he stood briefly while i grabbed his coat (wearing his piedro boots) and then walked to me for just 2-3 secs before falling over. Still a huge thing for him though! Got another appt with surgeon in July - still waiting for Community Paediatrician appt. We are in Kent.
I've noticed that surgeons and non community type people won't label anything. CP symptoms can mix a little, eg, my son is diaplegic, but has some problems with his arms and a weakness on the left side. But his arms are much milder. Your community person Paeditrican will hopefully diagnose and tell you diaplegia or hemaplegia.
We are in Plymouth and here surgery and botox here is not generally used in mild cases. My son is medium cp level and we have been told he's too mild for botox at the moment, and will only get it depending on how his muscles and bones grow. And how taught they become. The physio and OT input is most important and we see a community paeditrican.
I think the community is your key, do you have your own assigned Physio? If not, its worth trying to get one. They will montor prgress, give you things to help him, ours arranged for our sons splints, which make an amazng difference - he can stand and take steps with them on (he's 3).
Piedro boots are good tho, we've had them and they're incredibly suportive.
I would look into botox before you go down that road and ask what follow up physio will be. Simply as botox is tempoary, but alot of physio and changes can be made in the weeks following the procedure. Just needs to be in place.
You may also want to check out the Bobath Centre, Finchley. Its expensive, but you might be able to get charitable funding for a two week block of therapy - they helped our son to sit unaided, an amazing improvement.
Yes he now has a Neuro Muscular physio though he won't see her until the end of April! (That appt was made before i saw the surgeon). The surgeon said at the appt that she is the right person for my son but she needs to work harder with him (assuming he means more frequent visits esp).
Well Sunday and Monday Daniel took some steps with his Daddy around the garden a fair bit (wearing Piedro boots) which was a big surprise to say the least. He falls down constantly though and can only do it for say 10 secs or so. However today i am trying to do the same thing hubby was doing with him and he is refusing to put any weight on his legs. He also looks as if it could be feeling taut and stiff. Is this par for the course? If kids with CP do manage to walk does it take it's toll and the next day make them ache? He is really upset if i try to get him to walk and lifts his feet off the ground and cries
Take it slowly, this will all be new to him, and yes it can cause aching pain and his muscles are working much harder than anyone elses to walk, so he will be very tired by the end. CP affects everyone differently and if he is stiff, he will need the right help to minimise discomfort and make sure he is not causing any future problems.
A trike might help. We got our son a Tomcat, paid for by The Variety Club. He's very tired by the end, but it strengthens muscles otherwise not working as they should and does so much for him.
My advice would be not to push it until you see his physio and then ask lots of questions, in the meantime look into the trikes. It'll give you and him so much freedom.
There are about 4 trike companies in the UK, and lots of charities out there to help. Have a look. We just found the Tomcat suited us the best.
Yes will try taking it slowly - my hubby is a bit obsessive with things and said we need to encourage as much as poss - he actually said if we see him crawling or knee walking in the garden (because he likes going outside) we have to say "right you can't stay out here unless you stand up and walk". I don't know if he's being too strict with him or not. He doesn't force him to walk if he says no but he does push him a fair bit.
If I were you, I think I would have a gentle word with your husband and say, look he has CP, its going to affect him and he's only going to get frustrated if we try to mke him do things he can't do.
My son is 3, he too has diaplegia, the tightness means he cannot do things, but he's still naughty like other children so needs to be told off. So I save my battles for the things where I know he's like other children, I try to allow for his difficulties. Don't get me wrong he does try to play me, and asks me to carry him when I know he can crawl himself. But he tires easily and I have learnt to see the signs.
Hope this helps, its not easy, but it does get easier x x x
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My husband has OCD so this can sometimes make him a bit ott with things. I think a lot of our son walking the other day was more about my husband than my son. In fact the following day we had a bit of a tiff about something trivial and he actually said "what you're really annoyed about is the fact i got him to walk" which i thought was pretty pathetic tbh! Any achievement was my son's alone in my eyes. I have been reminding hubby about not going ott and he does hear me (i think!) but i can see myself getting rather annoyed if he doesn't take it on board. He works away 4 days a week which is probably a blessing in many ways. Since my son's *problems* with gross motor skills have become more and more prominent, we seem to bicker a fair bit as I am concentrating on my son more. With a daughter and 3 stepsons that stay alternate weekends it's not exactly the Waltons x