Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

everyday that sounds really interesting thanks for the link I have checked and there is someone quite close to us might have to give it a go as I gave DS2 a baby massage just from following a video of utube the other day and although not a massive difference it did seem to have a small effect! willing to try new things! hope you feel better soon sneezecake! DS2 is starting to take steps when you hold him upright I have taken this as a positive as ill be honest I never really thought he would!so something good coming into this yr just got to see what the rest of it holds for us! :) x

Choggers. Sounds fab

We have a Bowen therapist near us too

I'm snotty but who isn't this time of year . Dgs2 (9 mo) keeps 'kissing' DGS1 and leaves snail trails over his face

Hi
I have two children boy aged 3 and girl aged 4 and a half who both after a couple of years pushing the diagnosis with the consultant have been diagnosed with CP ataxic type. Both my children were born on time. I'm just really shocked that I have got two children with the same condition. Their development is very similar and scares me sometime. Even though they have no speech but understand everything. My daughter knows her number 1 -20 and her alphabet a to z and knows what letters go in her name. She has co -ordination problems but that doesn't her stop her trying really hard to try and write. My son who has just turned 3 and knows his numbers 1 -15 and alphabet a to z too despite not being able to walk or talk they are bright buttons.
My daughter 8 months ago has started to say the word no, i don't and my son is also trying to say no. They have come along away since doing conductive education.
I just wanted to know if there was anyone else out there with 2 children or more with this condition.
The consultants are baffled and so is genetics. They have said it could be down both me and my husband having a recessive gene but can't tell us anymore.

Clearly I need to catch up.....but just popping in to say dd is now 16 weeks post SDR and doing well. She is running again :-) The rehab schedule is busy but she's coping well. Hope you all had a great Xmas & happy new year x

Sara1234 - that must be a huge shock :-( I'm glad CE is helping. My dd had it for a couple of years and I also felt it helped her a lot.

Hi how is everyone doing?

sara it must be a huge shock that both your dc have cp. Personally I don't have 2 dc with cp, my dd is 10 mo and we knew from birth she would have cp. She had a stroke at birth.

inhibernation that's great news about your dd. :)You must feel so proud of her, only 16 weeks after surgery and she is running around.

Dd seen physio today, she has told us that dd is going to need splints for her ankle. She wants dd to have them soon as dd is pulling onto her knees and wants to be on her feet. I was just wondering what age your dc got splints at?

Also we bought dd her new pushchair, we bought her a bambini 3 wheel stroller. Thanks for everyone's advice.
We didn't do the dla forms either as dd is so young and I just didn't know what to write on the forms as we don't know how dd will be affected.

Hello everyone. DS been accepted for sdr in principle but we are still far from sure about it yet. In hibernation how much rehab physio are you doing, and how are you finding it? Also he is now very good with his tripod sticks, back to independent standing in his walking splints, and slowly cracking toilet training. However we are now being told he is the class clown in nursery and it's clear that nursery are just letting him wrap everyone round his little finger and blame cp for everything. Mind you they have also set a couple if very excluding show and tell topics so I am a bit pissed off with them generally. We are still looking for rda stables who will take children below 5 but no luck there either.

Anyway, ds got splints at about 20 months. They have been an ongoing issue for us. We still don't have MRI results back and local CDC being rubbish. Have draft statement which is also pretty rubbish as it is not specific or quantified but then because CDC rubbish medical advise not great. Hopefully he'll get the hours and the local school (independent) we want will take him once we have the hours.

Sorry just reread my post and realised it sounds very negative. I'm not actually at the moment, ds is making good solid progress. I'm just feeling full of cold and more blunt than normal. I was born a cynic and can do blunt too much too often. I don't mean too. Now if I was a different person I would add a smiley

Hi sara! Ataxic CP is very unusual in itself, but to have 2 children is really confusing especially as they can't pinpoint anything genetic. I can't really add anything as DGS is moderate to severe dyskinetic CP. Bright too but unable to speak or do much physically without aids.

Inhibernation that is fabulous about the SDR and the good movement already. I used to be glad DGS was wobbly and uncoordinated because he wouldnt have to cope with stiff muscles and the possibility of an expensive and scary surgery at some point, but have changed my mind now!

Hello All,

Melmo - my dd (just turned 2), 21 months corrected is about to be referred for splints, her splints are going to be made around her foot and big toe, to try and break up the toe curling she does when she is putting effort in, which in turn they hope will break the increase in tone in her legs?? Not quite sure if that makes sense?

Also wanted to share that for dd 2nd bday, we got her the 2in1 Vtech zebra - it has been a major hit, she loves it, her balance on it has improved over the last weeks and she is now able to (slowly and with a lot of effort) push herself around the house on it. Giving her some independence she so desperately craved!
Maybe a present idea for some of your little ones??

Also we are having a Bowen Therapy session tomorrow afternoon after reading some of your positive feedback on it. Will keep you posted.

I've made the decision today to apply for SDR!
Very nerve wracking.
I'm not sure out paed will do a private referral for a UK centre and NHS is a no go as we're in wales.
I'm terrified of going to St Louis but May end up with no choice. A friend has offered to move in for 6 weeks to look after my other children so I just need to find somebody to come with me if I go!
Has anyone been there? How long did you need to stay?
Words of encouragement needed here please !!!!

Summer great news with the zebra, if she's trying that you might want to try either a trike, or something like a scuttle bug. Ds trike was the best thing we ever got, we got it when he was 3 but wish we'd done it sooner. Also with splints if toe curling is an issue ask about a foot plate, which is effectively a plate that moulds to the toes when they are flat, and puts sensory messages back as each toe can feel individually.

Pumpkin how stupid that you can't get to a uk centre from Wales. There a quite a few people who have gone to St. Louis including I think I hibernation. The US is not for us but good luck, is sdr is what you want. Also if it is your kind of thing do look for the Facebook group. Again it isn't for dh or I but some parents get a lot from it.

Pumpkinpie11

I have sent you a private message please check your in box

Cerebral Palsy Sport are holding their National Swimming Championshios in Nottingham please check out their website for further information-

they are a fabulous charity offering lots of different sporting opportunities for children with cerebral palsy and other physical disabilities including boccia, football- both ambulant and Powerchair football, swimming, athletics and table cricket and other multi sports...

Hope it helps someone as it certainly helped my child x

Summer - Caitlin has always been very active and I do think that some activities as well as CE helped reduce spasticity. Unfortunately we knew we would not be able to sustain the programme when she was at school so SDR seemed the best option for us.

Pumpkin - we went to St Louis and the care was outstanding. There is a Facebook SDR page for St Louis, England & Wales. The Welsh one has lovely, very knowledgable parents who are active members and can give you lots of informed advice. I'm not au fait with the latest situation re funding for Wales but I think they will find some children via commissioning through evaluation programme. Not sure when though.

Muchado - my sympathies as I also have a cold and am extra grumpy :-) dd is doing 3 hours of formal physio per week, 1 hr of hydro and 30 mins RDA horse-riding. We also do stuff at home on a treadmill and ijoy. dd is coping brilliantly. I am less stressed than pre-op as I know she will not lose her function and the progress sans spasticity is rapid and plain to see.

fund

Everyday - interested in the good results you've had from Bowen technique. My aunt recommended Rolfing to me - I think it is a bit like osteopathy. Would like to explore these more as like sneezecakesmum I tend to think if it can't hurt and might help then why not. Sneeze - dgs2 9 months already!!! Where did that time go?!

I think the same, I'd rather give it a go, rather than wonder what if.
Had our first Bowen session yesterday afternoon and Little summer surprised me and really went with it. (Very often doing therapies with new people involves a lot of crying and resistance) but not yesterday. The therapist has suggested up seeing us fortnightly for 3 successive sessions. So we will see how it goes....

pumpkin11 we also went to St Louis so feel free to PM me.

DD had a break through this week and got her 5m badge for swimming!!! Started off just kicking her legs then added alternating backstroke arms :) Then she did about 3m breaststroke - managing to come up for 1 breath which is what she struggles with :) She is so chuffed with herself and I am so proud I could burst. Not bad for a 5 year old they said would never be able to do anything for herself

DGS2 yes 9 months, cruising and crawling and going hands free for a few seconds! Cannot get over the speed of his development even though it's what most babies do!

Kaffiene. The swimming DD is amazing! It's such a pity our hydro lessons stopped and they don't do any for school age children here. Dd and SIL took the boys swimming at the new public pool, fabulous disabled facilities but chilly water. DGS 1 still loved it and kicked and splashed around grinning all the time.

DGS loved the cranio sacral therapy and the ABM even though he freaks out with some therapies.

We're probably not going to brainwave again after this next session as we can't do the physio programme with him being in school and shattered when he gets home so although it's been so useful we just can't justify the cost as next time we have to pay the full cost and it £300 for the one day. Can't recommend it highly enough for newly diagnosed children.

Kaffeine - that's brilliant re dd swimming. I'd be bursting with pride too :-)

I'm happy to be pmd about SDR too

Morning all!

inhibernation we had a weekly therapy session (15 mins max) for about 6 weeks. DD2 right arm was tightly tucked up and wrist at 90 degrees tucked in also held tightly. It was like she wanted to relax in the therapy classes and just went with it. We saw measurable change after the 6 week period, which was when we had a physio/OT combined review. They both noticed the difference. Once the arm unfurled and is now in (supporting) use, the therapist started concentrating on DD2's balance, standing and, more recently, walking. Just a gentle massage rolling motion over specific muscle groups (facia?). DD2 can now raise both arms straight above her head by herself.

Now I can't possibly say it was the Bowen above all else that we do, that has solely improved her development. But DD2 likes the Bowen experience (lots of smiling and giggles during therapy and nods excitedly when I say therapist's name), is relaxed afterwards (always goes for a little sleep). I can't explain why it helps DD2 (which bugs me as I am endorsing it) but it does, so we keep going once a month.

summerdaydreams hope the Bowen helps LittleSummer as much as it's done for us.

and for LittleKaffine for excellent swimming! I'd be in tears and phoning EVERYONE!!

Well done LittleKaffine, I hope your mum explains to you what a terrific inspiration you are to others (me) who are hoping to get their kids into swimming classes (in a year and a half for DD2). Lots of and [squash] and [balloons] and [bunting] out for you this weekend, yippee.

waves to Chatee

Thanks for heads up on sports events. Definitely would like to get DD2 involved, but will check out what age is best to start (DD2 is 2.5 years). Got the site in my favourites now.

Chatee, did I tell you that DD2 statement has been finalised now and she's been accepted into our preferred mainstream school from Sep 14? You will always be very special to us for your superb advice .