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.

Summer I have DS2 who is 14 months and a with Quad CP and a nephew who is 15 months and walking about playing with my DS1 and we see them nearly every week I found this really hard I couldn't even play with nephew at first and now and again it comes back Its a horrible feeling cos you don't wish bad on the other children you just feel sorry to a degree for you LO. you are defo not on your own in this boat.

just wanted to share that we have finally had a breakthrough in getting DS2 his buggy/wheelchair. The local lions club have donated the nearly 700 pound we were short when we were told it would have been 300. I am so chuffed and RSM have told me we should have it by Christmas! best xmas present! :)

Ooh how exciting choggers...

For those who struggle seeing what their child can't do I just want to say from someone who knows that it does get easier, and you do get a thicker skin. Not sure which one matters most but they both matter. As ds gets older (he's 3.7 now) he still can't walk but he joins in in his own way, and can even play musical bumps and statutes. He is also easier as he can express his own views likes and dislikes, so so long as I ignore the worst competitive parenting, and develop a rhino hide at soft play it's usually fine, and it does get easier to delight in the little things, like ds using sticks. I do know how you feel though.

Fabulous about the wheelchair/buggy choggers! We had a massively expensive car seat paid for via charity. The 'kindness of strangers' is so true with our charities

I've posted a super story which will inspire you when it comes to MS school. Please read.

It's the one with the *.

. And the head teacher reference!

That's great CHOGGERS that's great for your ds2. Should be great for his independance.

I got my dla forms last week and tonight have decided to start them. Got to question 21 and my mind has went blank. It makes me think my dd is too young. Most of the questions we can't answer as we don't know yet thefull extent of dd issues. Guess its hard for everyone to fill in

Yes it is hard for everyone. But the thing is you are entitled to it, and not knowing what you need does not need you shouldn't get the dla. Take lots of deep breaths, look at cerebra, fill it out on your worst day, send it and out it away. Xxxx

Thanks iv stopped for the night and going to bed. Will hopefully get it finished tomorrow, iv actually got a pounding headache from doing it :(

Melmo do you have a lifetime nurse? as we do with DS2 I belive it because of the ng tube, but ours was very helpful in doing the DLA for and remember u are entitled so get whats your it can only help u! we got DS2 at about 4 months old as we were told to by the lifetime nurse.

melmo Good luck with your DLA forms, how have you got on with them today? Like the others say they are a chore to fill in but it is worth it as the money every month really makes a difference. For us it pays for ABM and private physio.

choggers that really is fab news about the wheelchair. How is she managing with it.
I didn't think you could get them for such young babies/toddlers? My dd will be 2 soon and I haven't even thought about wheelchairs or anything. Guess I was planning on using her pushchair until she's 4 or for as long as we can at least. How did you feel about getting it?
I hope I don't cause offence to anyone, but I think I am a bit in denial and am Hoping that she may not need one, although seeing as she still can't four point crawl let alone walk, I suspect she probably will. I just don't want to think of her as disabled and don't want others to see her as that either because we (dh and I) see it as secondary and only a small part to everything she is, if that makes sense.

sneezecake how do we see your story you posted about MS school??

hope this link works

It's got this
feel good alert

We didn't get the wheelchair til DGS was 4 as they said it's not appropriate for a child to be in school in a buggy, so it makes sense. We had a swifty first. The wheelchair moment is massively horrible but you get used to it! Having said that we use a special tomato jogger for the school run as its warm and comfortable and we've rigged up a seat for the baby behind it. It's lovely to push compared to the wheelchair.

Summer I will b honest it was completely knocked me back, as I have been fighting for it since aug as we were told he needed by his physio and OTs, that I had hadn't actually thought about the fact my son needs a wheelchair! and it turned up early so that was another shock. we wanted to use DS2 pushchair but he just couldn't sit in a good enough position and ment that days out where hard as he would get uncomfortable. we looked at the special tomato range but the rep actually told me that it wouldn't have enough support for DS2 shame as thought they were really nice.

Hi just wondering if anyone here has any experience of botox injections. We saw my daughter's paediatrician today and suggested botox injections to her. She in turn is writing to her orthopaedic consultant to see if she can get the botox injections.

My daughter is 26 months old and not walking. She has spastic diplegia cerebral palsy and is supposedly only mildly affected. Her paediatrician said that she had tightness in her knees and ankles and also her feet turn inwards. She wears piedro boots and has done so for the last few months. We have been doing physio sessions on a weekly basis now for months as well as daily physio at home and using a standing frame everyday. Don't get me wrong she has improved but not to the point of walking independently. She can walk holding someone's hands albeit quite awkwardly. We just thought that as we have put the work in that we would be further along than were we are now.

We are a bit miffed too that none of the health professionals suggested botox to us and it was up to us to do the research and suggest it to them.

Do you think my daughter would be a suitable candidate for botox? If anyone has had it what were the positives and negatives of it? Also how long was the waiting list? Have health insurance through work. Phoned them today and they were brilliant and really helpful. Consultant's secretary less helpful though. If anyone could let me know their experiences that would be great. Thanks Albaba.

DGS is not a candidate but from others I've heard it's very good. Crazy that it's not been suggested with a classic diplegia child . There shouldn't be a long waiting list. It all moves fairly quick here.

The special tomato is not supportive enough for a good upright position like the swifty but it's not designed for that type of use. More off roading or country walks or along canal towpaths! (Fun stuff!).

Albania, we have a classic diplegia child. He is 3.8 and had Botox first time at about 29 months. At that stage it was on hamstrings and sole us muscles. He also had feet turning inwards, but mainly his issue is hips not ankles. Anyway he still can't walk but I did feel like you did at around the same age.

Anyway turning to your questions ds had Botox in October 2013. We suggested it in August after a session at the bobath centre. We were told that the NHS would have suggested it but about 6 months later. The issue for us was the transfer from neonatal paed to community paed. We have had it once since and will do so again, but we are waiting for an sdr assessment at the moment.

Pros..... Day after he did it ds could sit legs completely straight in front for first time. Noticeable affect on his movement and stretch. Very quick to administer (like a inoculation). Little pain as far as we know. Long term after Botox and physio ds did manage to make faster progress with his kaye walker, and gain better movement, less scissoring, more freedom to move and more independence. Also for us the thought it was temporary made me less concerned about risk. The way we saw it the worst that would happen was nothing and small fever. So we thought it a no brainer. At the time it also felt we were doing something. That mattered for us. In the long term I think Botox was great. We had a second set of Botox later in adductors. That wasn't as successful.

Cons. Botox itself weakens muscles so itself does nothing. So it works if and only if you can get enough post Botox therapy. Depending on the muscles that can be 5 x a week to start with plus many more stretches during the day. So your dd needs to tolerate physio etc. and you need to have the provision. The NHS didn't provide it for us so we paid to supplement, but we have money so that's ok plus a good private physio. Also there is a small risk from the Botox itself as it is poison. The main risks are not usually relevant with spastic diplegia because of the muscles. I'd worry more with a hemi child. Also there is a theory that Botox gets less productive over time and so the doctors want to time Botox with development generally. Also in theory you should perhaps only do Botox every 12 - 18 months and it gets less useful over time.

Do let me know if you have specific questions.

Oops albaba. Sorry about my spell check!

Sorry to post and run but here's a link to the Cerebra page about what they've made my daughter.
www.cerebra.org.uk/news/Pages/CICsmobilitychair.aspx?utm_source=cerebra-news&utm_medium=email&utm_campaign=december13

Wow pumpkinpie! The chair looks great... Lovely happy video. DS has been using a belly scooter since the summer. I still can't get used to seeing him moving around the house, choosing where he wants to go and spinning in circles for fun like any other toddler. I love seeing equipment that helps the kids explore - even if where they always aim for is the kitchen cupboards!

pumpkin the chair looks absolutely fab ! How did you go about getting one? Can I PM for some info. Dd is getting increasingly frustrated about not being able to move as she gets older and more aware. Probably need to look into it for 2014.

sneezecake your dd and of course you must be so proud re the head teacher comment. glad he is settling into school.

Finally - want to wish you all a merry Christmas -

Merry Christmas to you all too :)

Summerday - via the link there should be a phone number for Cerebra's innovation centre. If you give Dan or Ross a ring I'm sure they'll be happy to help.
I hope you all had a good Christmas. For me this was my DD's first real one where everything mattered to her and she loved it!

Wanted to say Hi again, and Merry Christmas to everyone!

Pumpkin your DDs wheelchair looks terrific! Our DD has out grown her buggy, so I need a chat with our physio on our mobility options. Am going to show her the clip with your daughter .

I think our first purchase using the DLA funding is going on the Cerebra Sledge that I saw at your link - can't wait for snow! Our next purchase is going to be a term of Water Babies - anyone have any experience? I guess I'm still feeling guilty about drawing the benefit when I have a gorgeous and happy toddler, and I feel the need to justify how we're using it. Does anyone else feel like this? I am also thinking of setting up a seperate "DLA account' so we can track what we're spending the money on - am I over thinking this or is this what everyone else is doing?

I've not been on here in a while, so I'm off to catch up with the thread. Hope everyone had a peaceful Christmas. Nice to see all the usual suspects still here xx

DD uses DGSs DLA for family income so she can stay home more and only needs to do 18 hours work per week.

I save £50 per month for the last 5 years into a bank account and buy various bits of equipment like the soft touch sitter for him. It won't pay for really expensive things like weekly SALT (we know someone who pays £80 per week for a salt to go into school - gulp!) but has over a thousand currently and I am always buying things so a savings account is an excellent idea. DD and her DH obviously pay for other things too

sneezecakesmum that sounds like a really good setup. Time is so precious.

I'm about to finish work (end of contract), so our household income is about to be halved. I'm lucky that I have a Service pension so I know we'll be fine, but until I have to start living to the new budget levels, I really don't know how it's going to feel. Perhaps the DLA will be absorbed as family income for us as well.