support/information sharing thread for parents of children with Cerebral Palsy

[inhibernation]

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA

Just thought I share this book here. eating and drinking difficulties in children

dl.dropbox.com/u/45621668/Chapter%201.pdf
dl.dropbox.com/u/45621668/Chapter%202.pdf
dl.dropbox.com/u/45621668/Chapter%203.pdf
dl.dropbox.com/u/45621668/Chapter%204.pdf
dl.dropbox.com/u/45621668/Chapter%205.pdf
dl.dropbox.com/u/45621668/Chapter%206%20part%201.pdf
dl.dropbox.com/u/45621668/Chapter%206%20Part%202.pdf
dl.dropbox.com/u/45621668/chapter%207.pdf
dl.dropbox.com/u/45621668/chapter%208.pdf
dl.dropbox.com/u/45621668/chapter%209.pdf
dl.dropbox.com/u/45621668/chapter%2010.pdf
dl.dropbox.com/u/45621668/Chapter%2011.pdf
dl.dropbox.com/u/45621668/chapter%2011%2C%2012.pdf

Very useful downloads dev9 ..think I can put the list of pages into my favourites or print out. DGS eats but is simply not interested in food unless he's having a growth spurt. Heyho....feeding just another problem to add to the list

I don't mind either way. Feel free to save them on your computer or print them out as you wish. DS1 has issues with food and we are working through them but I bought this book mainly to avoid having any issues with ds2. So far, I have found it very useful.

oooh this thread has got really long!
Im never on here much anymore (FB has kinda took over!) but if anybody is in Scotland i do a wee FB CP support group
www.facebook.com/groups/cpsupportscotland/

of course if i was on here more often i wouldve remembered how to do a link!
Cerebral Palsy Support (Scotland)

Hi everyone, not been on the Cp thread fir ages either. But really need some help with ds2, he is in so much pain. Have been in touch with physiovwho was useless, just said its growth. He is on regular does of paracetamol which helps but as well as the pain is def losing range of movement & function.

Have increased stretches & exercise but dont know what else to do. Is needing wchair more & more & until now Cp has been the disability that has least impact on him. Really dont know what else to do to help.

Mymatemax. Does DS have diplegia? Or generally tight muscles? You need to go back to the paed as he may benefit from a muscle relaxing drug like baclofen. It's not right just to recommend pain relief in response to a problem like this. He needs a reassessment taking into account all his problems. It's horrible seeing LOs in pain.

Thanks sneeze, yes he does have spastic diplegia, with low tone in upperbody. Always had occasional pain but its constant & intense at the moment & has been getting worse. Will go back to the paed.

Hello everyone, just posting as this has dropped off threads I'm on. DS had 4 botox injections yesterday in both his legs. screamed the place down until we got the mini cheddars out when miraculously it stopped immediately. Even the paed laughed. She couldn't quite accept that choclate buttons wouldn't do it for DS though.

Hope everyone is well. isw how did the SDR go, Galena hoep fundraising going well. Hope everyone else doing ok.

at the chedders. Might try those for DGS as he loves wotsits and has gone off choc buttons. Hope you can keep us updated on how the Botox goes. Is it his first time? DGS has fluctuating tone and does go tip toes and has rigid feet but if he relaxes he's loose again. No idea if Botox works in this case. He's just got a bit tight in one heel so we are stretching but we've not done any stretches for yonks. Also not used afos as they needed redoing so we need to get on top of it. We see a neuro at a Botox clinic but last time she thought he didn't need it. All a bit confusing!

Sorry - I'm not a regular here -

My DS is 5 and has hemiplegia, quite mild thankfully ...

He has been into GOSH today for Botox to his thumb, supinator muscle and calf (all on left side). And I'm feeling shaken and sad and awful, as though I've done something terrible to him ie filled him with loads of poison.

Are there any reactions that I need to look out for?

I really want this to be the one and only time that we do this Botox and hope that by doing intensive physio over the next few months that we will see long term gains.

I don't know if I am deluded in thinking/hoping for this though.

Sorry - don't feel you need to reply - I just needed somewhere to write these thoughts and worries down and this seemed like the best place.

Ok two days later. And yes it was the first time for the botox. For the first time I can mention DS can put his legs flat on the floor infront of him, rather than have a slight bend at the knee. He's a bit more wobbly trying to walk but no other signs yet but very early days.

We have a serious regime with the stretches with 7 times a day until the botox has kicked in.... Fun while working full time.

He has a couple of pin prick bruises and that's it now.

As for reactions we were told at about 5 days post botox there could be a fluiy type reaction. So far nothing but again early days. Also that there were risks with some muscles but not those which DS had done (hamstring and soleus in his calf) I'm afarid I don't know what the supinator is. The key ones to watch are those in the face and those by the bladder. For us I saw the botox as a bit like general jabs but with fewer long term risks and less known problems associated with them.

We start intensive physio on in a couple of weeks to work on the strength. Through a mixture of the NHS and private we have 5 hours a week scheduled. Sod work for those weeks.

Hello skewiff. No experience of botox with grandson as yet as he is not particularly stiff, although he has developed a bit of tightness in one ankle because we are lazy buggers have overlooked stretches.

Other people report very favourable results and it is less scary than SDR or surgery.

Seriously good early signs thereonthestair

OK thereonthestair,

Thank you for your reply. I have never given any jabs to either of my children. I have researched them and am too scared to go down that road (although I know there are risks both ways). So that is why choosing to do Botox with DS has left me feeling funny.

Its interesting that you say that there are fewer long term risks and problems associated with Botox. Have you managed to research botox properly then? All I have managed to find is anecdotal stuff on the internet, or really scaremongering stuff - and I've ended up just listening to the doctors who say its safe (but I don't really trust doctors!!).

Do you have any information about Botox - or could you direct me to somewhere that gives helpful and unbiased (ie not just from the drug companies) information.

Thank you.

I am back waves! Well I can honestly say the last 6 weeks have been the hardest of my life! Dd had SDR, achielles lengthening and eye surgery within 3.5 weeks. But her last surgery was only last week and we can already see the benefits. She is still very weak but the difference in her stride length and so may other things in amazing already. SDR was diff the right thing for us. The post op schedule actually doesn't seem too daunting at the moment as most of it we do anyway.
Pre op we did a few rounds of Botox, yes it is a powerful neurotoxin but it's benefits can also be powerful. Dd had it in her calfs and adductors mainly. The injection sites will be painful for a couple of days. It usually takes 3-10 days for the Botox to kick in so there is no need for extra stretching until then. But then stretch, stretch and stretch again! For dd it meant being able to walk (with her walker) much longer distances as she wasn't fighting against her legs scissoring so much. It was awful then watching it wear off. She had flu like symptoms about 4 days after, treat with ibuprofen or calpol. Equally they might need some ibuprofen because you are doing so much stretching their muscles get sore. I used to be very anti interventions, if I have a headache for example I drink more water not reach for a tablet. But I think it's different fr our cp kids, their condition causes them pain. We are lucky to have access to medicines to help them manage that. It seems daft not to. The scaremongering on the Internet really annoys me. I remember someone being quite rude when they heard dd and I had the swine flu vaccine, saying they wouldnt put that muck into their child. I pointed out 1/3 of the children in America who died from swine flu had cp....
Sorry back to Botox, skewiff you may find DS needs Botox again especially in his calf as this area will grow so much over the need few years. Have Botox over the next few years will hopefully mean he will avoid more serious contractures or orthopedic surgery in the future.
Sneeze cake dd had (omg how weird is that to write!) fluctuating toe. Could stand flat footed but when up with the effort of walking. She is 4.5, if she had had SDR even 6 months ago I don't think she would have needed it lengthened.

Wow epic post waves to glittery from Scotland group ;)

Hi isw. just checked on here and so pleased your DD is doing well and hope she is still making good progress. SCOPE have and early years thread on their website re SDR and the experience of it. Inviting parents to contribute. Hope what they learn will push them to lobby for the surgery to be more available here.

Hi everyone. I've only just found this thread and would like to join in. My dd1 was born 11 weeks early due to the placenta starting to come away and weighed 2lbs15ozs. Her seven weeks in SCBU were thankfully fairly straight forward, but after failing to meet her milestones wrt gross and, to a lesser degree, fine motor skills, she was finally diagnosed with spastic diplegia when she was one year corrected age. After the first weeks of shock, heartbreak and that cronic nauseous feeling in the pit of my stomach, we started to embrace it. And we got to a place where we feel really lucky and are just so very very grateful that she as able as she is, because it could have been much, much worse. She learned to sit very soon after starting physio and took her first steps shortly before she turned two, which was several months sooner than the professionals had expected. Today, she can spin around, jump into a puddle, walk up and down stairs without holding on (very slowly, but still...), kind of run, dance in the most adorable manner and only wears her splints part-time.
Today, it is her fourth birthday and we are immensly proud of her, it is just amazing how far she has come.
Sorry if I've bored you, I just wanted to tell you about her. She is so adorable and sometimes I miss not having anyone around who has been there, if you know what I mean.

Happy Birthday to your dd Jokat, I hope that you have both have had a wonderful day-brought back memories of my dd being 4years old and all she wanted for her birthday was a weywo dess( yellow dress). Glad to say the speech has much improved now and she's my pride and joy ( at times) as she is just your typical 12 year old but with added cp.

Happy Birthday to your dd jokat. we are in not very dissimmilar position to you. Ds2 was born 11 weeks early weighing roughly 975gms. he has recently been dx with CP, so thank you for sharing this. It really does help.

Thank you We did have a lovely day, with dh having taken the day off, though I had to work in the afternoon. She got a scooter from her gran, one of those with two wheels at the front. She was absolutely ecstatic and has been wheeling round the house on it almost nonstop! I'm quite stunned, to say the least. She's got a little bike which she quite likes going on (though she never does a whole revolution with either foot; she pushes down with her left foot, which is her stronger one, and then moves the pedals backward so her left foot can push down again). We were told a few months ago by a German physiotherapist that she would benefit more from a balance bike because it would be much better exercise for her balance and for practising muscle control in her feet, which she has problems with: her feet kind of fall inward, her heels get pushed outward and her toes end up pointing outward as well, so sometimes her feet have a slight resemblance to flippers, especially on sand, when she doesn't wear splints.
Anyway, she isn't very keen on the balance bike and I was very pessimistic about the scooter, as our physio had pointed out a while ago what a complex task it would be for her body to coordinate the scooter motion.
And here she is, LOVING it! She won't steer it, she just gets off and changes its direction, then gets back on, and she goes ever so slowly, but she's having fun So far she's only done it in socks though, she's refused to try it with shoes or splints. Let's hope she'll feel more flexible about this at some point . . .
Do any of you have friends in rl with children who have a form of cp?

Thank you jokat for your post. My ds was 10 weeks prem and had a pretty okay time in scbu. He got dx with spastic diplegia 3 months ago at 18 months adjusted and I felt my world crashing on top of me. I totally empathise with your reaction to the dx - I was there as well. He had already stated to walk so like you I am grateful it is so mild. Ds was 2 this week and I'm so proud of him and what he has achieved so far. Your story gives me even more hope.

Glad you mentioned scooters jokat, must get one for ds1, I am sure he will benefit from it.

Sadly, no friends in rl with CP or otherwise. we are pretty isolated at the moment. Our whole lives seem to revolve around therapies for ds1(asd) and ds2 (CP). we are hoping that all this running around now will pay off in the later years.

We know a few SN children, but only via hydrotherapy. It's really isolating.

Hello. Our DS still not walking, despite having started out with a pattern almost identical to Jokat, 11 weeks prem, sailed through scbu, sat fine at 10 months ish, crawled at 11 cruised at 18 and then stopped for about a year so far and is unlikely to be walking any time soon. I keep revising my expectations and wishing the professionals had been more realistic at the outset. Due to go back into lycra (having been assured that it was a one off this time last year) and this time into a full suit in order to help core strength. Oh well. he's happy and his language is coming on leaps and bounds so maybe he'll get there.

I do sometimes wish that the docs would just say well actually lets try a wheelshair though as I am quite exhausted an isolated with all the physio trying to get towards walking.

In respect of others with CP, I know 2 with hemiplegia (one a neighbour) and one with quadriplegia through the NICU but no others with diplegia. I know a lot of others with Sn though. I just seem to meet them!

I do also feel quite isolated, especially when my work colleague said he thought I was super ambitious and frustrated him when i was asked if I could lead something accross my national firm and haven't yet said yes as I am not sure if I can juggle it. Just because he has 3 kids does not mean he understands how difficult it is to juggle appointments, travel and even babysitting. I can't easily get anyone else to deal with the witching hour after nursery which in our case involves two different sets of stretches, the standing frame and some other exercises, plus tea, bath and story in 2 hours..... I do it, my Dh does it, and sometimes I get my physio in but unless I get a trained babysitter I don't see what he expects me to do if i am supposed to be a few hundred miles away.

Oh well at least the physios say the botox has worked well so far, and we are now working on keeping the range as long as possible.

Anyone know how one goes about getting hydrotherapy. I have drawn a blank so far.