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, I think I have posted somewhere on this thread but not sure. I am more of a lurker! DD is 4 with either quad or diaplegia depending on who you talk to! She walks short distances with a Kaye walker but scissors badly. Anyway I just wanted to say that dispite all her local therapists saying she is not suitable for SDR we battled on and got her assessed by the team at Bristol. We have just heard back that they think she is a good candidate! Obviously we are just at the beginning of a very long journey but I would encourage anyone who thinks their child is in the range please be persistent and not put off by people saying their cp is too mild, or they are too weak.

Well done isw I think SDR is the way with diplegia children particularly. It will transform the way children progress. It just needs to be more readily available.

Hi. I am a mum to a lovely little boy 20 months. He was born 2 months early and scans in scbu showed a brain bleed. We were told this could cause problems. He is showing spasticity in his lower limbs. We are waiting for an mri to cofirm a diagnosis of spastic diplegia.

He started physio 2 months ago and has gone from camando crawling to properly crawling. Sitting still very difficult for him due to tight hamstrings,getting better though and he is starting to pull to stand well he drags his upper body not really putting any weight through legs.

I am thinking of private physio for him as nhs only once a month. Any thoughts? He has just had grommets placed due to re-accurant glue ear so now we can go swimming. He hates his stretches but i guess thats a toddler thing? He is also under opthamology and metabolic bone team as plain x rays are showing low bone density.

Sorry for epic reply but thats our life sometimes lol

yes go with the private physio. My Ds had physio weekly ish from 15/16 months onwards. He now has both weekly physio with the NHS and weekly physio privately. Both physios say its crucial to get as much done as possible at as early an age as possible.

As for stretches my ds still hates them (mostly) but likes them more when they are done by DH or his nursery than me. We try to make them as fun as possible. Also try doing them in the bath or pool. In the end though its something to get through until he is old enough to understand why you do them.

As he is now pulling to stand have you got a referral for orthotics? If not I would aks for one.

isw how did you go about getting the assessment with Bristol. i don't knwo where to start given my NHS says DS is too mild?

Hi thanks for reply. Yes i try to make it fun but have just decided it is something he has to do until i can explain to him or he can do it for himself. I will try showing another family member see if that helps. Great i have contacted a few physios in my area.

We are waiting for a appt with orthotics refered a few weeks ago apaprantly can be upto a 3 month wait. Physio said he would need insoles and maybe shoes and splints they will decide. His legs are always bent when he is standing and feet not flat. I guess this journey is a huge one?

Any other ideas for physical activities to help him?
Thanks

Price - We had the opposite problem with our consultant saying DD is too weak. I basically demanded (in the nicest possible way) a second opinion from an SDR specialist. As there are none in my area that had to refer me to Bristol. I think you can also contact Bristol directly and I think if you are close enough have an initial meeting with the surgeon. If he thinks you are suitable he will contact your local team on your behalf and apply for funding.

Charliegirl - have you been referred to o.t. Department for seating and standing frame if needed. There is a great book recommend somewhere on this thread, it was my bible in the early days. We also had special toys that were only played with during stretching and physio. Depending on where you are brainwave is fantastic. You see a team of 2physios every 4-6 months fr a full day (2 days on the first visit) and they design you a home program. I found it much easier to break up physio into 10-15 min bits when dd was younger. Catch her in the mood, sneak it in via play.

Isw- No we dont see an o.t or have anything to do with any department. I need to take some time and read the whole thread for ideas and books. Ive just loeked on the brainwave website looks incredible. Is it a private clinic? Id love him to go somewhere like that. Do you need a dignosis? As we dont have on as of yet.

Is SDR the surgery that is done in America by dr park that costs 50k? I see Bristol in some psots,is it available in the UK? Have any of your children had the operation?

Brainwave if fab. It is expensive, the first assessment is very comprehensive with a physio and an OT concentrating on one child (yours!) It is over £500 (about a quarter of the true cost) initially for 2 whole days then about half that (?) every 6 months. Home program laminated, DVD, help at end of phone and an in depth look at your child instead of a bit here and a bit there. We only ever had to pay the first time as a lovely sponser has paid most, and for a year, all the fees. Been going about 2 years. Definitely worth it.

The book I personally always recommend is here! Think it is the same book!

Long time no chat! Hope everyone is ok.
A wave to fellow SDR mums - dd is being assessed in 2 months. Has already had initial meeting. Delighted it is becoming more known about now.

Pleased and proud to report that dd is now toilet trained
She continues to delight us with her wit, charm and determination. Have noticed that she is getting tighter though. SDR will not eliminate tightness but will free her of high tone which will make stretching more effective.

Looks like an exciting/ scary time for a few of us

It is good, isn't it? . And kudos on the toilet training - such a relief. Dd2 was dry day and night at two, way before she could walk. It was a bit surreal, as we had been expecting possible continence issues long term. She was by far the easiest of the three, and we did nothing at all. She just hated being wet (had a lot of sensory stuff at the time) so, that was it. No talking or walking, but completely dry.

Dd2 had her first guitar lesson last night... For the first twenty minutes I thought it was never going to work out. Her position was terrible, she kept dropping the plectrum, she couldn't even get a noise out of it. I thought the poor teacher was going to have a breakdown at the thought of going through this every week... (it was a trial lesson, as, well, who knows if she will cope, really?). She was really suffering with intention tightening (presumably because it was a new situation and she was stressed - although unbelievably excited - she's been begging for two years). However, just at the point when he said what he wanted her to practice over the next week at home (pretty much just holding the damn thing and keeping her wrist straight and trying to make a consistent noise) she just... Did it. Funny girl. No idea if she just relaxed because it was the end of the lesson (I asked her afterwards and she said not, she'd was disappointed it was the end). Whatever, it worked. The teachers face was priceless.

She tries so hard, bless her. Fingers crossed.

Hello again everyone. Inhibernation fab on toilet training, one more thing down. And guitar sounds great.

We have had a usual raft of conflicting and contradictory reports from all over the place. Some say botox now, others say too interventionist and just go with lycra and see if that corrects the gait issue. So far DS not tightening up much, but balance and hips an issue. Everyone we speak to is still anti SDR but we are going to push for a referral to find out more. Also now going to try and get a general second opinion on everything as we have lost faith in our current paed.

I just want a little bit of a break and to now when things start to get normal!

Normal? About 5 or 6 once you have negotiated the starting school and new (less) therapy routine.

Unless you emigrate when they are 6... Then you have to learn a whole new health and Ed system, and discover doctors with titles that you have never heard of... we've been here three years and I still have my ss application uncompleted.

If it helps, we were told no Botox by one ortho as he knew we moved every couple of years, and whilst he would do it, he knew when we moved that Botox treatments might not continue to be prescribed, so he didn't want to start them...

Her Lycra suit was great though.

Thanks. No plans on moving (although we might buy a place in the country by the beach but that's another thread) so we have to manage another 3-4 years then....

Appointment with paed was interesting. I think we are saying yes to botox, but potentially in different muscles than we throught (main issue is hamstrings, bobath say try other upper leg muscles, paed says calf muscle...) of more interest was the discussion about sdr.

Our paed is potentially pro (surprisingly) but not yet as there is insufficent data from the UK yet and she wants to know how things look in 12-24 months time once there is follow up on British children. She is very sceptical about St Louis as the reports are only on cp issues and they don't report bladder issues and problems thoroughly which concerns her, but apparently Bristol don't go so far into the nerve so she is less worried. She is however paying a lot of attention to Bristol and what they do, and is potentially going to advise on funding SDR through the NHS for some children once the additional year or twos data is in. So it looks like by the time my son needs it we may be able to get it and even possibly get the NHS to pay for it...

Hi Everyone
It's fab that your Paed is potentially pro re SDR but she seems fairly ignorant still about it. Sorry if that sounds arrogant but I've researched it A LOT. She is correct - some children experience bladder problems but I gather it's quite rare. But the technique used at Bristol is exactly the same as the one in St. Louis. The neurosurgeon Kristian Aquilina trained under Dr Park, who pioneered this version of SDR. Also there are already long term stats but in America. Whilst SDR funding remains a postcode lottery I can't see your Paed really being satisfied with the number of stats available for analysis. Of the 27 or so children who have had SDR at Bristol some have self-funded. Many British children are still going to St Louis.
We have had conflicting advice about Botox. We are not going ahead with it now as dd has assessment for SDR so this would not be the right time anyway but also I am concerned about the risk of seizures. Some children have developed Epilepsy after Botox. It is rare but scary enough.

Have you joined the fb SDR group? It's very informative. There's one for St Louis and one for UK

Thanks for that. No I haven't joined the fb SDR group as I don't do facebook, for a number of reasons mainly to do with my job , and whatever the circumstances personally that is not negotiable. Increasingly I know that makes me a fuddy duddy and maybe I will change my mind later but i don't like the legal risks in fb.

In respect of my paed, I actually disagree. But it's really funny (and interesting) how we all get different information. Now I know all children are different but the treatments aren't that different.

On the botox all the paeds we have spoken to, along with Bobath say that there would be no risk in reality of any kind of seizures for the muscles which would be injected, and our paed has never had any negative side effects from the botox she has done despite having gone through them with us. It does all depend on the muscles involved though as the main risks are is the neck is injected. Now she is funny about injecting gastrocs but DS doesn't have tightness there so that' for us is not an issue. She is a UK authority on botox and has done other local children I know.

This will potentially out me, so maybe I can see another namechange coming along, but she also sits on the research committee at bristol and is invoved with their ethics committee. If she didn't believe in SDR then I doubt she would do that. She is a bit hoity toity and "just trust me I'm a doctor", and we don't just trust anything, but on this issue so far I do. And insofar as i trust the NHS on anything I trust it for this as she will do the referral to Bristol, so it wouldn't be her opinion anyway.

For anyone else reading this the issue between bristol and St Louis (apart of course from money!) is how far into the nerve they cut which is why there may be the bladder issues for some US children.

Also for anyone else reading this the one thing which I would strongly recommend to everyone is that you try to get the best gp possible. In all of the stuff we have looked at it is our GP (well actually our GPs) who are by far the most use and best advocates we have had. We have had the GPs refer us to Bobath, and also out of area for a second opinion on splints, they have also agree to refer us to GOSH for a second opinion on something else (although to date we haven't done this) and it is never an issue. I moved GPs to this practice on the recommendation of a neighbour whose son is somewhere on the ASD spectrum and the neuorologist friend and it is the best thing I ever did. Our PAed is very aware that this GP practcie is very interventionist as she has spoken to them a few times about DS and in fact ended up being kicked into doing the bobath reports as a direct result of the GP getting in touch.

everyone - you are lucky to have a great GP. Pickings are not rich where we are. I did change on the recommendation of a friend but the new GP has not been as helpful as we hoped.
Can understand your concerns re fb.

Am very surprised at what you/ your GP says re the varying technique and will seek clarification about that. If your GP is looking at post op progress/complications and considering on advising on funding within the next year or so, she at least has less stringent requirements than the PCTs. Many are wanting proof of sustained improvement into adulthood!

And re Botox - dd would need gastrocs. I have had contact with a few parents who believe Botox caused seizures in their child. The children have CP; diplegia to be precise. Difficult to prove.........we all have to weigh these things up and take the decision we feel is best for our child. It's not easy.

Yeah - opinion varies so much. I find it interesting sometimes but mostly infuriating

www.allergan.com/assets/pdf/botox_pi.pdf

I found some info on Botox risks before but couldn't remember the link. These are the prescribing guidelines.

We chose not to have Botox in the salivary glands because of the risks associated with that specifically - there had been some issues with swallowing in some children, and dd2 had such a complicated history and weak swallow we were reluctant. We would have used it elsewhere though - her neuro thinks her personal risk of sz activity is low now well past neonatal period. She's had no recurrences in sz activity since they got it under control as a newborn, and was weaned off meds.

Hi everyone,
We have been assessed and accepted for SDR both Bristol and St Louis. I have researched SDR a lot. The procedure offered by these 2 places is the same. There is an older style SDR surgery which has been offered in the UK and other countries for many years. This is more invasive, opens up a larger area of the spine and cut nerves higher up in the spine. This is when there can be problems with bladder involvement. This procedure was then modified by Dr Park in the US where Dr Aquiliana from Bristol and other UK surgeons have been trained.
I hope that helps clarify I can probably dig out the research papers the subject if anyone would like them. There is someone on here whose DS had the older style SDR recently at Oswestly I can't remember her mumsnet name but still follow her blog. My DD goes under the knife in 3 weeks!

Just to add, personally I won't be happy going for SDR without trying Botox first. Dd responds very well to Botox and it has been a chance for us to see what she would be like wihout spasticity "holding her up" which is what many professionals are worried about. At the end of the day SDR is permanent and should not be undertaken lightly.

isw - best of luck for the SDR

It's true that good response to Botox is seen as an indicator that SDR will be more effective. By the time we pushed for consultation on Botox (having had varying opinions as to whether dd should have it) we were already in the system as far as Bristol is concerned and their advice was to not proceed until at least assessment completed. I've always been concerned about it though as it is unlicensed for treatment of lower limb spasticity in Paeds and adverse symptoms higher in this group.

I can't see any advantage to dd keeping her spasticity and lots of problems if she keeps it.

It's hairy maclairy who's son had SDR at Ostwestry.

Ostwestry - phone playing up

Isw - I was very surprised to read what everyone said about St Louis' procedure being more invasive so I am going to ask Kristian Aquilina about it.