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

Thanks sneezecakesmum - that is really interesting re the core affecting speech - you are such a mine of information!!

Hairy - so glad the SDR has gone well that is great news

jjkm - that is really good re the sitting and does bode well for her development. Glad your local services are good too - makes a big difference.

That's great that you've got good support, jjkm. We have too, and it makes so much difference.

Hairy, glad the op went well. I shall be perusing the blog, as we are hoping DD will be referred to Bristol in a couple of weeks when we see the paed. That said, I know the op in Oswestry is slightly different to the Bristol one...

DD has never had any speech issues (except that she speaks too much!). With her it's only physical issues.

I would like to ask though whether any of your children get especially tired? DD goes to playgroup 2 mornings a week (I have to stay due to clinginess, but that's a whole other story), and I notice her noticeably flagging by mid-morning. I'm wondering whether it's because the CP makes walking so much more difficult that it's using up all her reserves, whereas at home she just potters round the living room.

We got our lycra clinic appointment through today. DD is terrible for inturning of the hips/knees/ankles, so the hope is that lycra shorts might help her gait. Fingers crossed!

Galena - my dd does get really tired too and by Friday she is absolutely exhausted! In fact we've just talked to OT about it who agreed that dd was using up all her reserves with school, riding etc. I would love to do more physio exercises with her but is just too much.

Good luck with the shorts - hope they help!

Thanks surviving bless all our little ones - she has a wheelchair but then she can't be independent as she cannot yet self propel (she's only just 3). She'd need someone to push her all the time.

We were told by a physio that a child with cp uses 3x more energy than the average child each day, so yes your dd will be more tired.we found that during/after a rapid growth phase dd would be even more tired than usual and also more accident prone(falling over) as it took longer for her brain to readjust for the growth and her perceptions were inaccurate thus leading to falls causing two broken arm bones during a three month period.

Hairy -I will follow your blog and wish you and your son a safe speedy recovery as we know Oswestry very well indeed. My dd met Mr Roberts aged 3 days and is still under his care now-possible surgery this summer.Have you seen the posters on the wall in Orlau? Of children with different disabilities?
Happy to chat to you at any time,
Take care xx

dd was seen by a leading Orth dr last week and I am very confused now. Basically we were told to ditch the standing frame and the gaiters (latter don't get used much) and that botox isn't great because it weakens the muscles. So.........given that all of these things have been sold to us previously, who is right?

Hairy - thanks for posting the link to your blog. So glad ds has coped well with op and you must be relieved it is over and that you can focus on the physio.

I realised that I hadn't replied to a few PM's about the blog so thought i'd do it on the thread.

Inhibernation - who did you see, was it a dr at the Evalina? We have had similar advice and now regret following some of it. We were thrilled to do away with night splints but have really paid the price, we lost a lot of range at the ankle. 3.5 weeks is serial casting swiftly follwowed by SDR seems to have undone some of the damage, but not all of it. We were only 6months without them as well.

I would suggest you follow that sort of advice with care!

That's interesting. However, our monkey has CP but also hypermobile hips and ankles! Her DAFOs add stability to the ankle and hopefully the lycra will add stability to her hips. I'm not sure whether the hypermobility will cause SDR to be less than ideal. Whether they'll decide that she'll be too loose if she has it... :( Although I should stop worrying about it till we've been referred and see them, I guess. :)

Skye had Botox back in October. It had good results - far increased mobility in each muscle/joint treated. It does wear off though - and we can tell that her hamstrings are tightening up again... However, with the stretches we're keeping them stretched and mobile at the moment.

We want to go for SDR though, because it is like permanent Botox... They do say that Botox doesn't work for every child, and even for children who respond well, it becomes less effective each time.

inhibernation sounds quite duff re the standing frame particularly as your DD I think had hip issues? I would ask the physio if I were you, and why not botox if she is tight? It doesnt weaken muscles except in the way of relaxing them and not allowing the wrong signals to make them tighten up.

Luckily DGS has fluctuating tone so doesnt need any drugs or surgical interventions. Thats the good bit, the bad bit is he can't control anything easily! I think he could do with a lycra suit sometime soon though, and he also has hypermobile wrists and ankles. Off to find blog!

Ooh, hairy! I was just thinking about you this morning and wondering whether you had a new date! I guess I missed it, will catch up on the blog.

Galena, just got your pm about school. Happy to answer any q's.
Dd2 had a Lycra suit around the same age

Haven't been on the thread for a few weeks though, so I need to read back and catch up!

Hairy, your sdr blog made me cry. so glad it is all over and going well x

Thanks for the comments.

Hairy - it was Mr Gough (and two physiotherapists) I wish I had taped the consultation so that I could listen back to his explanation for why these things were not helpful. But from what I remember he was saying that dd is very active and that being in the standing frame for an hour is not helpful because it curtails her movement, doesnt do much to stretch the tight muscles in her legs because she doesn't hold her feet flat (I thought she did - because she had splints on but they said research shows that even with splints on the child doesn't stand flat footed in a neutral position). Ditto gaiters - too restrictive and passive positioning rather than active. They said we would be better off focusing on her standing and getting her to reach from side to side to get things (extension). dd has never had night splints but wears her day ones at least 8 hours a day. When did ds start wearing night splints?

Gough said very recent research shows botox causes muscle wastage when what we really want to do is help her muscles to grow. Though on that note he depressingly added that dd has shortening of calf muscles and hamstrings already and that nothing can make muscles grow because they grow in response to being used correctly and the messages from her brain don't allow her to achieve this.

So we are left feeling very confused about the home physio programme. The physios at the Evelina said they would contact dd's physio to give guidance. Incidentally all 3 gave one of those looks when we mentioned that we would be taking dd for assessment for SDR. It was pretty obvious that they thought it a lot of work for not much gain but it hasn't put us off- not by a long way.

sneezecake - apart from the doom and gloom we did get some good news about dd's hip. Last time there was early signs of a mild subluxation but not anymore. Hurray! They will review dd in a year. Also her spine seems ok.

Welcome yakbutter

I hope someone with more experience will come along. I also sometimes wish we had physios posting on here - even though we are not always their best fans.

How often does your dd see a physio therapist? Am assuming she goes to a SEN school? Do you speak to the other parents? I've discovered more on here and by contacting parents of children with CP online than I have from dd's doctors and therapists.

Imo we need our childrens therapists and doctors to be proactive, creative and dynamic but ime this is a pipe dream.

Where abouts do you live? Maybe if you are close to other posters they might be able to suggest something. To an extent I can understand how frustrating it is for you. In my area there doesn't appear to be anyone who is affected in a similar way to dd. They are more severe. She has just started a therapy group (conductive education) and she is (I think) the only one who has SD - the rest appear to have fluctuating tone. I often wish she could meet a child affected in a very similar way to her.

The sleep deprivation issue must be very difficult for you all

Hairy,
fab updates on your blog - so glad to hear how well your ds is doing you must be really proud of him as he seems to be really taking it in his stride either that or you are a very good writer....hope that you are keeping well too, at least the food in the hospital cafe is of a decent standard (my dad quite likes coming to this hospital with us and has a big breakfast and goes for a lovely walk whilst we have our appointment)
take care xx
Welcome yakbutter - I am not here that often, my dd was born with a dislocated hip and had it corrected as a baby but due to cp still has regular check ups and at the moment it is still ok-not the best it could be but not causing concern, but my dd is classed as a quad but has mobility but can only walk wearing bilateral afo's and does tire very easily.Academically ok but struggles to keep up with writing......hope to chat soon x

Thanks for the info inhibernation. You see you are just as informative as us!! I got a power plate (I think you recommended that too!) What your doc says seems to make some sense and I am always impressed when they say they've looked at new research, as often they are stuck way in the past.

What he says about standers also has a sense, but what about the hip joint not forming a proper hollow if they do not have weight put through them, even in an artificial setting like the stander. Its so difficult as you only get one chance to do the right thing, and if its not right......?

wrt the splints. We are very interested in Anat Baniel Method and on her page she recommends a dr who makes splints which leave the ball of the foot and toes free for sensory info to get through as splints desensitise the foot, (makes sense but in the US) she prefers a child not to have them but says its down to the childs paed. She is also a big fan of floor play to promote normal crawling and locomotion, even though things take much longer. The muscles do stretch and grow with normal usage as your doc says, and it is interesting to learn how these messages from the brain are distorted in spasticity. It certainly seems right if SDR works so well in SD children and breaks up the incorrect signals (I dont believe it is the intensive therapy afterwards, as our friends son had intensive everything from an early age and the spasticity worsened as he grew - is is waiting now on SDR!)

I'm really surprised you cant find more SD children as it is far more common than athetoid or ataxic CP (10-20%), spastic is around 80%. We think DGS is a mix of athetoid and ataxic but has neither in the described form, no spasticity but fluctuating tone. We know a couple of SDs but no-one like the boy, he is supposed to be spastic quad but can suck his toe when relaxed! His neuro disagreed with his paed

PS How do you get to hairys blog. I can never find blogs unless i stumble across them by accident, then hooked for ages!

MN and CP websites are definitely more informative that some drs!

PPS Inhib. when our friend told her physio she was considering SDR she told her if she went ahead she would walk out and never come back

I've been reading for awhile and was not sure if our experience was helpful because I thought the orthopaedic work had moved on since we were faced with these decisions. My ds is 18 now and had multilevel surgery at 11. We looked into SDR and were told that he was a "good" candidate. We were looking at doing the surgery in Montreal at the time. I have to stress that I think things have moved on in the past eight or nine years. We ultimately chose not to do SDR and took the multilevel surgery option mainly because of issues particular to our son. His lack of balance was not something we thought the SDR might not overcome. We were convinced, at the time, that physiotherapy was the crucial factor to the success of SDR and our Physios showed us studies where the intensive physio without SDR was as successful as intensive physio with SDR. We used botox five times starting when my son was four. It had a profoundly positive outcome three of the five time but most significantly allowed my son to move from Kaye walker to sticks. We used a standing frame and gaiters and had his hips x-rayed every year to check for the "lack of hollow" in the hips. Success with botox was entirely to do with the doctor's ability to target the muscles correctly. If they missed - nothing happened. If they were precise then the over active muscle turned off and the weaker muscle compensatd. Our therapists and doctors were very proactive. Incredibly good, helpful and informative. They were the orthopaedic and physio team at Chelsea Westminster but we were referred to gait clinics at Guy's as well as Queen Mary. They all worked together to reach the best conclusion for our son. We organised for a physio to work with him at school each week and he had sessions at chelsea Westminster as well. The Multilevel surgery for us was a huge success. He no longer sinks and will be mobile with sticks all his life. Hope this is of help!

He is described as "moderate". He has spastic diplegia with some arm/hand fine motor skills involvement and other milder symptoms affecting a range of things in his body. One of the techniques we used was walking in a shallow swimming pool and we also used walking on an indoor tennis court (very flat - nothing to hold on to!). He has had AFO's all his life - until now. We've only just started not using them. The surgery made his muscles work more efficiently - he was less tired - but his balance and sense of spatial orientation is still tricky. Pain was reduced significantly after the surgery. Academically he was always quite bright but discarded as a poor student because he couldn't hand write well. Processing was slow exacerbated by motor skill problems. Once he learned to touch type he thrived academically. I also saw an academic improvement post surgery - which may be put down to spending less time worrying about getting from A to B and more time studying!