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Ds diagnosed cp yesterday....(10 Posts)
we knew ds had cp from around 7 months but, was told that hes spastic quadraplegic. but quite mild. this was a bit of a shock I knew his legs were involved and his right hand is closed but thought his left hand was ok.
the dr has suggested buscopan, but ds doesn't have spasms as such, he pushes back which he finds uncomefortable, but he is starting to control this reflex.
has anyone got experience of using this drug with mild spasticity?
hes also had fits in the past which he hasn't been medicated for but have now gone away of their own accord. I'm afraid that the buscopan could bring then back as this is what i have read.
we do extensive physiotherapy with him, and everytime the physio has seen him, she says 'i've seen another improvement'
I'm really hopeful for ds to have a lot of mobility but i'm under no delusion that this will take a lot of hard work annd time
no experience of buscopan, but wanted to say hi.
dd2 was originally dx spastic quad, but her muscle tone changed a lot between 2 and 4. she went from being v tight with both hands clenched in boxer pose under her chin to being mostly low tone and hyper-mobile. (she's 6 now with an athetoid dx - still full body involvement but a more sensible dx from our pov)
she sounds quite similar to your little man (the back-arching and pushing back is familiar from early years) but this did improve over time - our physio was brilliant and the time we spent working on her hands was definitely well spent. i credit physio with dd2's current abilities tbh - her first consultant told us the physio would be the most important person in her life, and he was right.
good luck with your meds decision. it wasn't right for dd2, but you know your wee man best and for lots of kids it opens up a little purposive movement if it improves the spasms and rigidity
Hi, your DS sounds quite similar to mine also, although mine is only 9 and a half months and no diagnosis yet as such, but would expect it to be spastic quad. He also does the pushing/flinging himself back when he is excited/unhappy etc which makes getting him to sit very difficult! No-one has suggested any drugs to us for this though, and I don't think he is having involuntary spasms as such, just his way of reacting to things. The physio doesn't seem to have any suggestions about it either, I just hope he grows out of it a bit.
Anyway sorry no useful suggestions there just saying hi. I expect it to be very difficult when someone actually says the words and gives us the diagnosis even though I know already, so I hope you are feeling ok.
WE also have a back archer/push backwards-er here. DS is 15 months old. He has done it for a while now (since we started working on sitting him up - lazy oik) but he has really started to bring it under control over the last few weeks. Still does it when excited or tired and fed up of sitting, but is improving every day .
No experience of the drug tho - it has never been suggested to us, but DS has severe epilepsy and is heavily medicated, so it may be that its not an option for him.
Quick Hijack BADKITTY - was thinking about you recently, how are things after your last thread?
No insight into meds to offer but just wanted to acknowledge your post. Hope you are feeling ok, it must have shaken you up all over again. Hopefully someone with experience of buscopan will come along and advise. Take care x
hi i've done a bit of reading, and the buscopan works on all his muscles not just the tight ones, this gives me the impression that it would make him go backwards. therefore i'm not going to do it.
thank you for all your relpys, its such a support to know that there are other people who have been where i am and can understand. my friends are good and supportive, but just have no idea iyswim
hope to hear from you all again xxx
Hi FB, things are ok at the moment - DS's supposedly "urgent" EEG has finally been scheduled for next Monday (1 month after referral!) - he has been ok in the meantime though with no other obvious seizures which is good. Fingers crossed for Monday.
Feeling shit this morning after visit to physio, feel like every time I go they point out something else he is doing wrong
i think the buscopan is the same as baclofen, i was worried about ds loosing his head control, as its something we work most on. i hink it would frustrate him more and make not as determined as he is at the mo
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