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.

Yes ikwym. Hard to see your baby not doing things younger children can do. But it is so special when they master something new.

Hi all , my son has unknown gdd , he has a Kaye walker . Do any of your dc have or had one and how long did they use it for ? Tia

inhibernation this is one thing I struggle with seening children younger than my DS2 doing so much more!

I often wonder if it will ever get easier to see!

DS2 is a yr old on Thursday and can roll over so don't know if this is a good thing or if he is stll quite slow I just get so frustrated with not knowing!

I have also looked into SDR but haven't got a clue where DS2 would stand as I read they wouldn't do it because hes had meningitis but im not sure how true this is!

muchadoaboutsomething Your post about SDR made me smile as I could have written a similar post about 18 months ago. We were getting DD (Level 3/4) assessed at Bristol and it was UK or nothing for SDR. I also was not happy about money entering into the equation.

DD was accepted for Bristol and we were told she would be operated on within 6 months. Then someone said to us, if the cost issue was removed which centre would we prefer Bristol or St Louis. At the time Bristol had operated on 19 children, St Louis over 2,000. It was a no brainer. As much as I support the development of SDR in the UK and believe it will be a mainstream treatment for spastic di and quadplegia within the next 5-10years. When you look at the facts like that you have to do what is best for your child. We choose St Louis and flew out 3 weeks later.

We are now coming up to 1 year post op. We are lucky we have an excellent local team and fantastic email support from St Louis. Whether you have SDR in the UK or US all follow up treatment from Physio, orthotics, further treatments etc is decided and delivered by your local team. Bristol, Leeds, St Louis can offer their recommendations but at the end of the day your local team need to agree with it.

Of course it isn't a magic wand! DD has the weakest core of any child I have seen be accepted for SDR in Bristol so it has been a long year. Indeed i have seen a lot of children i would describe as stronger be turned down. It troubles me as I think politcs/ funding issues pay apart in who gets accepted and who gets turned down in the UK at the moment.

I would say it took DD about 4-5 months to get to pre op abilities but the difference now is she is getting stronger and will continue to do so. Pre op her abilities had been fairly stagnant (consistent with her gmfm level) since she was about 3. Now we see improvements in her strength and stamina on a weekly basis.

Interestingly I know 2 children who have undergone SPML surgery. I would choose SDR hands down every time.

Kaffeinr, that's really interesting. I haven't been able to find out much about SPML especially in the uk, although i have heard it is being done in Norwich. Would their parents say the same do you think? Do you know why they went SPML rather than sdr? Did you also consider it?

The point about cost is also very interesting, because for me cost isn't an issue (luckily I am in a very fortunate position and although it is the one thing that really worries me politically that treatment depends on wealth, and i hate that, i will still spend everything i can on ds to give him the best future possible. i get very cross about healthcare lotteries, and inequality though even when on the fortunate side of it). Politics/funding do worry me though as I am concerned the uk is conservative. How old is your dd? How did going to the us affect the rest of you life/family/work.

hmmm, lots to think about.
We have just been to US to see someone for ds1(ASD) and I would have no hesitation in doing the same for ds2(CP). Agree that UK is way too conservative with regards to treatments, Health regulations are way too tough in the UK compared to US. It does keep the system free of abuse, but unfortunately it does restrict what HCP can and can't do so they tend to play on the safe side and consequently lagging behind on treatment options when compared to other countries.

Muchadoaboutsomething "I do not want to have an op in the US where money is part of the equation." Can you explain why that is. I am interested because I feel the opposite.

I have very limited faith in NHS so feel that I trust people more where I am paying them to provide a service as there is no politics/funding issues involved.

Interesting debates :)

It certainly is inhibernation and thank you everyone.
This has been a much needed wake up call for me. Lots to get on with.

I don't trust anyone where they are selling a service. Us medicine make obscene profits undertaking surgery for the rich because the rich can afford to pay, I am not saying unnecessary surgery, nor I am saying that the surgery is not beneficial. However where profit comes into the equation I am sceptical. You can tell I am very left leaning!

I am worried that ability to pay equals needs to pay for things that may not be necessary (health checks, drugs etc.). Not sure I believe that for sdr, although i have concerns about sdr where the results may be less clear cut. I am also very sceptical about US healthcare at every level and have been for 20 years. So it's hard to think going to the US is ever a viable or sensible option for me. I am not saying the NHS is perfect, it is clearly not. But for me at the moment the US is not something I would consider. It might be easier if I would.

much There is a doctor in Spain, in Barcelona Dr Ignor Nazarov who does SPML surgery. I believe he is well regarded in the Spanish speaking world. I don't know how much information there is about him in English though. One family (who speak English I could probably put you in touch with them if you wanted - would need to check first) I don't believe their daughter would have been a candidate for SDR due to the type of CP. The second don't speak English and for them the cost/ language barrier/ culture was just too much to consider for SDR. They come from a small Spanish village but their local consultant was supportive of SPML.I haven't seen their DS since his surgery but have spoken to his Physio and I don't think the results are as dramatic as with my DD (They are similar age, he is slightly more mildly affected than DD)

DD is coming up for 5.5 The trip to the States was obviously intense for us. Luckily my husbands work were very understanding he took a mixture of holiday and unpaid. I am a SAHM. In fact it meant he was around more as has we had it done in UK he would have gone home/ back to work after the op rather than be around for the 3 weeks Physio/ rehab. In some ways it was easier being so far from home as we concentrated on DD and nothing else. Thank
goodness for Skype/ Facebook and the Internet in general for keeping in touch.

Dev This whole thing has changed a lot about the way I think about Healthcare. I do feel that with the NHS there are many things we are not even told about because of the financial constraints. In America, because hospitals are commercial organisations they are under immense pressure to provide the best service and offer new treatments. I hate the way that there is this casual acceptance that children/ adults will have some degree of pain and discomfort. I heard that a UK orthopaedic surgery said after a trip to America he estimated that the UK are 10/15 years behind America in terms of managing pain in patients with CP!

But saying that we are lucky that our local team are fantastic. Some of the stories you hear about some areas of England and Wales are terrifying. I think Portsmouth/ Southampton are currently without an orthotist so children are being made to wear splints that are too small or go without.

"I do feel that with the NHS there are many things we are not even told about because of the financial constraints."
Oh yes. The stories I could tell about that. That is the biggest reason why I cannot trust anyone in the NHS.

Kaffiene - I agree with you. By the way, do you have friends in Southampton/ Portsmouth? Only there's a private Orthotist who is based there. His name is Andrew Tag. He used to provide an orthotics service to the NHS team who see dd and I think he provides orthotics for other NHS trusts. He has a good reputation. dd never had any problem with the splints he made. He may be able to see people privately.

Kaffiene can ask at what age your DC had the SDR? and is it Quad CP my DS2 is a Quad and I want to make sure he gets whatever can help him I also understand that SDR is not a magic wand but if it can help then I would like to get as much info about it! DS2 is just about to turn one and im trying to work out if this is an option for him but I don't really know what he needs to meet n at what age? as I don't want to get pasted the best time for him if there is one.

I'm wondering if we should start a sub-thread on SDR. Feel we are taking over a bit on here. What does everyone else think?

I think that would be a good idea, as I wouldn't want newbies to have to trawl through the SDR stuff and get distracted. And I remember as a newbie it was important to "talk" to others about other things.

I also think it is important other types of CP and severity don't get lost or feel unwelcome.

I don't mind reading about SDR even though DGS is dyskinetic so cp surgery is only a remote possibility for him. Not only that but I can offer a bit of info on SDR as it crops up in my researches and we have met people who's children have had it.

Choggers. A child I've met had SDR even though he is quad cp and had meningitis as a baby. It was for comfort and cleanliness and very successful after some teething problems. He is severely affected.

Also I am on a forum and the question came up about SDR for cmv and a physio said cp is cp no matter what the cause. The same muscles and nerves are affected so SDR isn't ruled out.

I suspect if all the spastic diplegias left this thread there wouldn't be many posters left and SD is pretty much on the SDR pathway. An SDR resource would be good but I think there is a fb page for this?

Sneezecakesmum oh that's good to hear there is still some hope! DS2 pead did explain that she thought he would be quite sever but then I see him roll over n I am unsure as to what classes as quite sever now as in my eyes as she said to me we don't expect him to do much, does rollin over class as not doing much? his core is still quite weak and he is still learning to sit up but everyday gets a bit better!

I find it really informative to read about the SDR on here if im honest as I regularly check this thread. but that's just me

Ok let's see what the majority decision is :)

Choggers - one physio told us dd would probably never walk beyond the classroom. She now runs! Don't give up hope. Rolling relies on muscle strength.

Quads/GMFCS 4+ (some 2 and 3 as well) Nottingham are doing SDR. Some differences. No inpatient physio. Baclofen test as part of admission criteria.

I have also wondered if an SDR thread would be useful but don't know if we would be diluting ourselves too much? A lot of this chat would have gone way over my head as a "newbie" but I also wanted to know as much as possible about how kids older than my DD were getting on :)

inhibernation I will pass the info on - thanks

choggers DD was originally classified as a quad - I can't remember but I think she could maybe roll from front to back around 1 year old but the other way took a lot longer maybe when she was around 2 ?? She was re classed as di with arm involvement when she was about 3. She had SDR when she was 4.5. Our hopes for SDR were to make personal care easier. her scissoring was getting more severe and barefoot transfers were impossible. These hopes have already been exceeded.

I think at the moment the best you can do for your DS is working "Physio" into his daily life as much as possible and see how he evolves. There is an excellent book - I think you have been recommended already. We also go to Brainwave who give you a daily Physio program to do at home. This was invaluable support to us in the early days. I do think DD wouldn't be where she is today without their input - obviously we have to actually do the exercises and activities with her!

I think it's a range of things that helps. dd did conductive education for over 1 year. She also does horseriding. She's had private physio since she was diagnosed. It's very expensive but we use the DLA money. Cycling is also very good.

Rolling over is very good I have heard from so many parents re a dire prognosis which has turned out to be rubbish

Our list is
hydrotherapy
ABM
cranio saccral therapy
BRAINWAVE
Portage
PT/OT
triking
powerplate
research research research!

probably more but my brain is frazzled by all the research!

Been at the research again

Regarding the GMGCS and questions relating thereof

This talks about it in much greater detail and highlights the limitations and reservations about the system.

research

ps I am always looking for ways to hoik DGS out of GMFCS 4 and this looks good to me.

See I had forgotten we even do all this stuff. It's just life now! But yes our list is pretty much the same although we have never tried ABM and stopped doing cranio.

Well read your links sneeze when have had a more restful night