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

Hi, will they assess non walking children? I had understood they needed to wlak first. Also because of DS pattern of tightness we are actually advised the other way round, that DS will be later to walk independently, but actually his longer term prognosis is likely to get better not worse as his lower legs aren't affected, just his hamstrings/adductors and that is why the core strength is the issue.

Yes they will assess non walking children.

The evidence base for SDR states that early intervention is best and the neuro surgeon we saw said in his opinion gains are best if surgery is done before 8 yrs of age though there are many who have had it after this age - even adulthood, with good results. The best thing to do is get an opinion from Bristol. Or you can send info to Dr Park in St Louis and he can advise of suitability. That's quicker. I'm not sure if what you have been told is true, maybe so, but you still have to deal with the effects of spasticity. And SDR isn't only effective on lower legs but also hams and adductors and hips

Also afaik almost all children with CP have weak core strength. SDR enables a child to develop true muscle strength.

Hi inhibernation, Thanks for the info, very useful to know.

Do you know what is the earliest they will consider children for surgery. We are at the wait and see period with DS2 who is one year old. He has CP but nobody has mentioned particular type yet, I am guessing it is Spastic Diplegia as his lower limbs are most affected.

He also has a weak core. I have seen the vests mentioned up thread, would NHS supply them or am I better off buying my own.

You're welcome Dev

Leeds will apparently operate from age 2, Frenchay from age 4. So it depends on where you want to go. Dd had first consultation at Bristol 2 months ahead of 3rd birthday. She was referred when she was 2 1/2.
Waiting lists are a problem so worth bearing in mind.

Lycra garments: ime NHS PT/OTs often have to apply for extra funding to supply these. We got shorts via the back door but it was a waste as she wasn't fitted on her and we had to return it.

There's a company called jobskin who provide custom fit garments and they seem well thought of. We had dd measured for some sock splints there but had to pay ourselves. Still waiting for them so can't say how good they are but a mum on the SDR fb group who is also an OT was raving about them.

Has anyone mentioned horse riding or hippo therapy to you? Again, the earlier you put your child's name down the better. Dd was on list for 18 months. It's great for core strength and stretching adductors and hamstrings

Sorry about typos

Frenchay = Bristol - just in case that confused you.

NHS will supply lycra clothing via the physio department. Our trust has its own sewing dept for this type of equipment but I dont know exactly what it entails. Our PT said she wouldnt recommend it for DGS as she wanted to build up his core rather than support it in a corset structure. Obviously makes sense.

There are lots of different garments, including theratogs and they have different degrees of support and therapy uses.

The vest we are getting is a SPIO vest www.spioworks.com/ It doesnt form any significant supportive structure but is more to teach the body where it is iyswim. Our PT told us about a year ago she was not keen, and we have struggled with core strength (which affects hand/arm movements and stability) and are not getting anywhere fast. So I ordered it! Copped out of telling her yesterday but I think its worth a try

nobody has mentioned anything to us at all if I am honest. We even had to badger the physio to order boots as when he stands, he bends his toes a lot. The NHS seems to be taking a very much wait and see approach which I am not a big fan of.

I would love to share stuff with someone so they can tell me whether his deveopment is typical of a child with CP. Is it getting better/positive etc, but we are quite isolated here so no RL contacts I am afraid.

Would you be able to point me in the direction of some useful resources, what could help etc. Thanks.

Ah yes the wait and see approach. Yes let's wait for the damage and deterioration and then let's see how the child suffers. It's a great policy! Unfortunately they are largely reactive rather than proactive.

Where abouts are you - roughly? I also felt very isolated and longed to meet other families with children who were similarly affected to dd.

I'd recommend looking into RDA (riding for disabled) - ds a bit young but can go on list now. Also conductive education

Yes let's wait for the damage and deterioration and then let's see how the child suffers. I am not sure why, but that really did make me laugh out loud.

We are near Stansted at the moment, looking to move to SW london in the near future simply because services are available privately easily.
I will look up the items you mentioned.

Glad it made you laugh :-)

SW = good. Can recommend Kikis children's clinic in Balham.
Plus there's a conductive ed place in Putney

We're in South London so happy to meet up if you fancy it. Stanstead not a million miles away either

Stansted even

That school looks very good and the therapy center is exactly what I have been looking for. Thank you again.

Would love to meet up when we have moved, between DS1 and DS2 therapies, there is barely any time, which is why we want to move to London to save some time traveling.

Hi.

In respect of lycra we have had lycra shorts on the NHS when DS was about 17 months, and AFOs similarly. They didn't fit so they got adjusted then did fit. That was easy to do.

We then went out of them as there was a real question mark over whether they provided any benefit to DS, but are going back into a shorts vest combo next week (again on the NHS) the physio made the referral. They reckon we have to run with it for 2 years. Ds is now 2 and a half ish. They also reckon that the lycra will build up the core rather than support it, because it will get DS to stand better. DS has no problems with his hands though so that may be the difference between us and little sneezcake.

When we got the shorts we did also look into gettin them privately, because they only give you one and a 17 month old is not great for not getting crap on them leading to a lot of washing, but the cost was prohibitive. I would also say that having recently had DS measured up, even though I think I am pretty good at that type of thing I wouldn't have wanetd to do the measurement myself as I couldn't have been accurate enough.

Lycra doesn't work well until the child moves as I understand it. It also doesn't work with real "terry" type nappies. Often they don't recommend lycra unless the child is very disabled, but our clinic is quite pro-active and reckons it should really help with DS core. They also say that the issue with the core is the prematurity rather than the CP. Which is interesting. Not sure whether I care, but they reckon that can be worked on (and it is improving) whereas CP less so as the damage is static.

dd had shorts/corset all in 1 - came up to her chest. We were told she would have been better in an all in 1 with short sleeves as the garment was slipping down. It couldn't be altered unfortunately.

Weak trunk muscles can be improved in children with CP. dd's have already improved with private PT and RDA. The spasticity interferes with muscle development so that's a real barrier. Spasticity is the enemy more so than the PVL

We started this thread just over a year ago.

Happy Anniversary

Happy anniversary and thank you for starting this thread.

I used to struggle to find the CP stuff on the SN board - glad it's been useful for people. I am very grateful for the info and support I've received on here. Am sure it's helped me stay reasonably sane.

Sneeze, with dd2 we had to choose - it was either give the body full trunk support so that she could maximize fine motor or less support to try to improve core strength, thus resulting in potential improvements in fine motor...

We went for appropriateness of activity, so in school and at the dining table, she had full on pelvis and trunk support to free up her hands, and the rest of the time she had less support and a whole bunch or core strengthening physio...

The Lycra suit helped her sitting...

Mm, yes, happy birthday, thread!

mmm dilemma madwoman! DGS will have trunk support with his walking and sitting so hopefully he can do better handwork (slowly coming on...). Just hoping the lycra vest stops him looking (and no doubt feeling) like a drunken sailor

Happy anniversary thread. Had also noticed the date!

We did SDR in oswestry six months ago, I am happy to answer questions about to should you wish. Somewhere on this thread is a link to my, no a bit neglected, blog about our time there. It's proved life changing for dS and our family, but post op is a lot of hard work.

We use Lycra and kinesio tape a lot in this post op rehab stage. Lycra shorts, provided by the NHS, and tape, provided by private physios, on his tummy and front of his legs. There is a noticable increase in stability and use of the correct muscles when he has these on. We still have long splints, AFO's and are going to be working with a top orthotist so don't have the Lycra socks atm but they are also great. When he was younger DS had a long arm, long leg all in one suit and over six months the improvement in posture, movement and interestingly digestion was noticable.

If you are looking for experienced private physios in SW London I can recommend therapy4kids in Wimbledon. We travel to see them and they know their stuff and are very, very good about making the most of every session, even if the children are reluctant!

In hibernation- you must be close to me, we did small steps for years with DS1, excellent! We now do RDA at eh diamond centre in carshalton, they take children from 2 to do hippotherapy, with a physio and no saddle etc. the wait is a long one so get on the list now! We now do weekly sessions there which is not hippo therapy but more traditional RDA stuff. Riding is fantastic for core strength, DS is often wiped out by a 45min session.

I've heard about the core issues being linked to the prem stuff rather than the cp stuff too, it's interesting and I wonder if prem children with no cp also have trunk weakness but that it can be masked by the lack of cp or it just strengthens with the increasing activity of the child.

Sorry for the mammoth posts, I haven't been on here for a while and just catching up! Hello to all the new people!

Happy anniversary to this thread-it's so nice to chat to others with children with cp.
My dd is 12 and has worn a Lycra full body suit / shorts at different times between the age of 5 - 7 years
Wears Afos and has not walked with a Kaye walker since being 9 years old ( for the last two years at primary) and only ever used a wheelchair for school trips/longer days out/ holidays
But please be warned after 1 year at secondary school - the environment has taken its toll on her feet and body so please push for help for your children with cp-don't make them suffer encourage them to use a wheelchair at times to enable their bodies to rest, they generally work 3 times harder to do tasks than everyone else.
Hi to Hairy- please read her blog it's amazing to see .
Hairy we are currently at RJAH on week 1 of physio (after ortho surgery in september)and there is someone here who met you when they came for a pre op visit.

Chattee - Yes I know! I had a long chat with her when her first funding application was refused, so pleased it's all happened now. Tell her I'm watching her FB updates and I hope she and her DS are both coping ok. It gets MUCH better from about day 5! We might be due up again soon for more top up physio, just trying to arrange all the ducks in a row!

Hi hairy - lovely to hear ds doing well :-) How long will u need to keep up the intensive PT? Dd goes to the diamond centre!! A half hr session once a week. Ordinary riding as opposed to hippo therapy. Yes - it exhausts them doesn't it. dd loves it :-) We are nearer to the diamond Ctr than Putney or Balham - Surrey borders.