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.

I will look to see how far Bristol is from me but I think it's a fair way.. That made me giggle about the kick of the wheel.!!

Good luck Fizzy!

Dd has had her walker since she was 3ish and goes everywhere with it. We did go through a phase where I attached a dog lead to the walker on her weaker side so I could help her straighten up without me having to bend all the time as I was getting back ache from leaning in the same way all the time. It was also useful on hills and to stop her running off when I was paying at a till for example. I spent a lot of time walking very slowly around quiet shopping centres while she built up her strength and stamina.

The thing is about walkers is that they don't actually teach them to walk. As they get more used to them they cheat and use their arms to lift themselves up and scoot along ;) DDs "walking" in her walker is awful but great for her indepenance. She just uses it to get around as fast as possible A trike is an excellent way to build up legs muscles and better to use for longer distances as it is harder to use the "wrong" muscles.

Am on my phone so can't look back but stretches are a must with CP, either passive stretches or as they get older more active ones like adapted yoga. Standing frames are useful for leg and back extension. If your child uses a Kaye walker it is really important to stretch and open their backs as they can get really hunched over.

Lovely to hear everyone coming along. Fingers crossed it contines into the winter with all the coughs and colds!

Botox - there isn't a min age as such but dosage is given by weight so it makes sense to wait until they are big enough for a decent dose to be given. I think DD (not in UK) was about 2 years on her first time. They just did her hamstrings I think at first then as she got bigger split it between hamstrings, calves and adductors. It takes about a week to take effect and then you stretch them like made. The effects last for 4-6 months.

*stretch like mad!!

Hi Guys. He's having it Bristol Frenchay. He's in theatre ATM. I am climbing the walls waiting for them to call us.

He started with the walker at 18m. He used it FT in school from year 1. And then progressed onto tripods. He can just about manage about 20 steps with crutches but his balance is off. Obviously we have been working on it bits with having SDR today, we expect a relapse before he gets back to normally and progresses. Xx

He uses his kaye walker when we need speed and distance. But he walks MUCH better with his tripods. We try and encourage them all the time and he now doesn't use the walker at school apart from lunch time as the yard is sloping.

Will be thinking of you Fizzy. It will be a rough few days but so so worth it. We are a year post op on Fri and although it has been intense do not regret it even for a moment.

Fizzy......hope everything goes well. Terrifying just thinking about it

Fizzy hope everything went well :)

hope it all goes well Fizzy x

Hi all I have a few questions I was hoping you could help with. We had dds hv out today, we got talking about babbling which dd does not do. Dd doesn make noises like ba ba, ga ga etc. More just shouting. She says dd might not be able to talk but babies should all be babbling by 7-9 months. Dd is 6 mo. Dd is also getting another hearing check at 8 mo decided by nicu before leaving. Her hearing came back clear first time but they said they just want to double check. Hv said the reason for this is that dd might only hear certain tones. Also my dd has really started to hate us stretching her right arm and gets really frustrated and upset when we move it. Were not sure if its sore for her or if its just uncomfortable because its so tight.
Any advice will be much appreciated

Hi Melmo.

Our warning flags went up at about 10-12 months old when DD2 was not sitting unsupported and showed left-hand preference. Apparently they should show no particular hand preference at this age. We were already under a consultant paed due to complications at birth, so we had great access to medical advice.

My advice would be to ask your GP for a physio and paediatrician referral (mention 'high tone' in her right arm) and to watch how she meets her milestones. Watch to see if she chooses to use her right arm (our DD2 wouldn't unless we gently restricted used of her left arm). Keep notes on what you see your DD do and what she struggles with - and anything out of the ordinary, because whenever we've been seen by physio, OT or paed, they view us as the 'expert' on DD2 and rely on our input.

hope this helps, and hope someone else comes along soon to add to or correct my advice. I don't want to give duff steers.

Hi Fizzy. Hope you DS's recovering alright and that the op went well. .

melmo they weren't sure if DD would be able to speak. She didn't start babbling until about 13 months but did the shouty thing before that. She didn't speak until she was 3 now at 5 she has pretty much caught up. She did have significante SALT input though. Can she drink from a bottle or sippy cup. I have lost count of how many cups we had to try before we could get her off a bottle.
I think regular hearing checks are routine for premmie babies or if they have had any jaundice - not sure if that applies?
Dd is a leftie, took her a long long time to uncurl her right arm. Is it curled and tucked under (like a boxer) or stretched out? Speak to your HCP professions about how to keep stretching without causing to much discomfort.

Kaffine that's lovely to hear that your DD has caught up with her speech by 5YO. My DD is 2 and not yet talking. She can say 'car' but only because we can decipher her, a stranger wouldn't recognise it. And 'd' for daddy. Today was the first I heard her say 'Papa' (Grandad), but it was more like two breathy 'p' noises. We mostly get a lot of pointing and loud shouting noises rather than vowel/consonant sounds. I hope we get a good outcome like yours, thanks for a positive story.

Thanks everyday and kaffiene
Dd had a stroke at birth so we have a paed and physio. She was term when born.
Dd leaves her right arm alot, she will give it a pull with her left but doesn't use it much. Doing her stretches we were given is what she hates. I can barely lift her R arm above her head. We keep being asked by HV, paed and physio if making noises so has got me a little worried.
Dd does drink from a bottle milk/juice. Never even thought to try a cup as she can't drink from fast flowing teat. Dd has started on mushy foods but can't handle lumps yet. She really loves baby porridge :)
Dd definatly has a preference for her L hand.
Thanks for the advice, everyone on here is so great :)

Hi guys, we are on day 5.

He point blank refuses the Gabapentin. We have resorted to pinning him down. It's horrific :(

It will get better fizzy I have heard a lot of people have problems with the Gabapentin. DD was like that about diazipam. In St Louis they filled the syringe with the diazipam then sucked up a loaded thick chocolate sauce. So they get the choc taste first and relax enough to get the other stuff down them.
When can he leave the ward? Are you all going to stay in the family room or I know some people have rented apartments nearby.
We were discharged 5 days post op and it was such a relief to get a bit of family time/ privacy. Stay strong

melmo Not sure if your DD is too young but to get our DD using both hands/arms we spent a lot of time playing with big objects. Balls, teddies etc? They need to open their hands to hold a big object and 2 hands to throw them. Reaaly helped DDs symmetry. Hope that helps

Oh yes Kaffiene I remember physio had us playing with a beach ball (big but light) to get DD2 holding it between both hands, turning her right hand the correct way, and practising throwing.

Hi Fizzy just wanted to stop by with some and . Sorry I have no experience of what you're going through so feel at a loss to help. Sending lots of best wishes though .

We have tried mixing it with juice/yogurt etc. but he will not take it without vomiting everywhere :(

He's not had any other pain relief meds for 2 days either :/

Thanks for the advice, been trying to put toys with handles in her R hand. We don't think she realises there is anything in her hand. Its a real struggle to open her hand and then she drops it straight away.
Is it common for dc to get tighter when concentrating? Dds arm comes up and her fist gets tighter when we place anything infront of her. I will try with bigger toys to see if she tries her R hand.

fizzy so glad your ds is ok. What a strong boy he must be to not have had pain relief.

Melmo yes, at first when DD2 was trying very hard, her muscles did tighten further. Now she has learned to relax a little and can use her right hand and arm better, but not perfect.

I think I stimulated it through gentle massage of the arm and gently moving it, singing a little song or something to make her relax . Then trying to encourage her to reach up with arm (twinkle twinkle star actions and song).

OT had us put a small sticker in the palm of her right hand to get her to look for the sticker and turn her hand over - 6mths might be a little young for all these 'exercises', I don't know.

Sounds great, I will give the massage a try and I enjoy singing to dd too :)

Dd loves anything spotty, I have white pj trousers with black spots that dd tries with all her mite to get to. Maybe if I got some spotty stickers it might work and if not I can try again when she older. Thanks for the great advice :)