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

hope ye dont mind an interloper from the west of ireland joining in. our dd is 5 and half with cp, hydrocephalus and epilepsy. she has been through a lot in the last 5 yrs but continues to amaze us all the time. she recently started crawling which we were told she would never do. she uses a kaye walker for short distances and also has a wheelchair which she "drives" when it suits her. i am just wondering if anyone knows if sdr (selective dorsal rhizotomy) is available in britain. i have been reading a bit on it in the st louis hospital in the us and would love to know if dd was a suitable candidate. it would be so much easier to go to britain. is there anyone on this thread whose child has had this surgery? its great to have a thread like this. thanks

Hi, stopped lurking and come off my perch.
Haka , my ds (15 spastic quadriplegia) has just had a baclofen pump inserted. He coped very well with the op, home now and so far AND IT IS VERY EARLY DAYS but I have been very impressed with it . Instead of the extreme arching and going into full body extension he is lying much straighter, I can dress and change him easier , his legs feel lighter with reduced spasticity and he seems so much calmer. If this keeps up this would be a big success for him so much so that I am feeling guilty about how long it took to arrange it all. Children may be different in how they respond (hence a test dose is always done before a decision is made to proceed) but in ds case his situation with spasticity was so very extreme we had to give him a chance to see if this worked. I am crossing my fingers that he continues to get benefit.

Hello everyone, im really pleased to have found this thread as have never met anyone else with a child with cp. DS is nearly 2 and has spastic diaplegic CP diagnosed at 12 months old. He is doing really well, cruising a lot and hopefully starting to think about takingnhis first proper steps soon. But it has been a very hard and emotional journey and im now 34 weeks pregnant with DD so all a bit nervous!

Just wantednto say hello and have two questions. Might we be entitlednto DLA? I have ben tokd that as ds cp is mild and he is only 2 theres no point applying - is thisbtrue?

Second question more light-hearted and random! DS has a fantastic physio and portage worker andnjust wondering if people give them christmasnpresents and if so, any ideas?

Mmmmmcheese, I applied for DLA when DS was just over 1 corrected age. I had been told it was very difficult to get DLA but after a age we got it, initially lower rate, I moaned a lot and then we got middle rate. My Ds also probably has mild CP, or mild end of moderate but a friend told me that there were still ots of things we did for him that we wouldn't have to do if it wasn't for the cp, so worth a shot if you can face it. I don't spend much of it yet, occasional private physio, hosptial parking, more washing because of the ridiculous policty that he can only have one pair of lycra short but that's it

Ferryman, I think selective dorsal rhizotomy has started at Frenchay Hospital Bristol. Google it. I vaguely remember reading a few months back a local newspaper report of a child having it done in UK instead of USA and think it was a neurosurgery team there. Sorry not to be more specific.

we got dla at 6 mos, and were told to apply by the consultant. the sn hv helped me with the forms (i signed them - she wrote them. i still don't know what they said. )

essentially it is definitely worth applying - think in terms of how much 'extra' you are doing with ds than you would with an nt child - how many minutes/ hours of physio? how many appointments? is he uncomfortable or does he suffer from any spasms or need to be re-positioned in the night? what equipment or supports does he need? if he uses splints, for example, does he use them willingly, or do you have to soend time reassuring/ coercing. does he comply with his physio or take twice as long because it upsets him? does he need help to do the same things his peer group can do without help?

diplegia can be more straightforward if there is no fine motor or speech difficulty present, but a lot of kids with diplegia do have issues with these too - so look at finger feeding etc - is he coping as well as his peers? are you having to prepare food a certain way? do you have to help him put finger food into his mouth?

does he need additional supervision whilst playing (ie does he fall frequently even if crawling?) do you need to help him access the toys he wants, rather than him digging them out of the toy box himself?

does he get any extra supervision at nursery?

dla is very interesting. when we received our award, i went straight to the sn hv and told her i thought there had been some mistake. she sat me down very patiently and said that although dd2 was doing v well, it was only because of the additional input she was getting. without it, she wouldn't be.

we've left the uk and our dla has stopped now. i might miss the money, but i sure as heck don't miss the form filling.

yes I put all of that kind of stuff, that because DS was more likely to fall he had to have an adult with him all the time and even though all children need supervision most children can sit without falling over while you get up and reach your cup of coffee, that I had to make sure he didn't fall into the water in the bath as he could not sit, that I or nursery had to do his exercises several times a day, (and sent the exercise sheets to the DLA people), that it took longer to change DS because his legs went spastic, (and subesequently because he had to have the shorts and splints on and off all the time). That he had to be positioned to learn how to crawl, sit cruise etc, and carried from one activity to another as he couldn't crawl. The nursery backed me up on that, and we told the DWP that they had 10 hours one to one funding to him (not that I think he gets 10 hours one to one not least because I know the other mothers get jealous if he does!)

we then had all the time it took to give inhalers, anti reflex meds, anitbiotics etc but that is a different story

not really different - (well not the reflux stuff anyway - unusual muscle tone has a lot to answer for! )

and frequent anti-b's for chest infections due to aspiration

Hi again-

RE children asking questions- I much prefer it.One woman was madly 'sshhhhing' her child when she was asking why DS was in a disabled trolley. I told her not to worry and just told the child his legs didn't work in the same way as her legs did

DS used to have a great walker that was really helpful- Then the physio changed it to one with 4 wheels.Every time he came to a downhill slope,he would lift up his feet and perch on the back !!

He has an odd gait now and does need to hold a hand or two outside (and he does fall over a lot)

into - dd2 used to do that. she couldn't sit on the back of the croc though. i was a bit concerned at first, the whole 'walk sensibly' thing, but you know, in the end i thought about it properly and realised she was only doing what every other kid gets to do without thinking - running around and feeling the wind in her hair, having fun and playing. if you can't run, but you can get up a bit of speed if you lift your legs when you go down hill, then fantastic. it was especially great in the playground - it meant at least she could try and keep up with the other kids.

it didn't stop me having a panic, or contemplating putting walking reins onto the walker , but it made me realise she wasn't doing anything wrong, just being a normal kid. (and got me really fit running around behind her trying to stop her falling off kerbs and picking up too much speed...)

- I agree.He had loads of fun......didn't help his walking though !!

i know. but not everything in life has to be therapy. you can just enjoy it as well!

Ferryman I've just been catching up with this - am not on Mn much at the moment as I am fighting to get funding for DS to have SDR over here in Oswestry. He has been accepted for SDR both here and in the USA but we have decided to go for here, however I have now had to meet with the MP who is going to start fighting on our behalf to get our NHS trust to fund it. I seem to be in the minority of CP parents who think that Oswestry is very good and while the actual op is slightly different the rehab (physio etc) afterwards seems far more thorough as we would be an inpatient for 6 - 8 weeks.

The Frenchay hosital does offer it, they offer the USA version of it bu tI'm not sure about the post op rehab or how intensive that is.

I would look into it, am happy to Pm if you want more details. We have been told that it is unlikely DS will walk as an adult without it so if we cannot get funding for here we will fundraise to go to America.

It's nice to see so many others here - sorry to not be contributing - it's a bit busy atm!

Oh yes....My boy knows how to have fun - He's just spent hours speeding round the house on the 'spinny chair' (narrowly missing my toes and the cat !)

zebrafinch and hairymaclary thank you both for replies. sdr has been in the media over here recently with at least 2 children going to the states for surgery. it has never been mentioned to us as a treatment for dd but i want to gather as much info as possible to arm myself for a discussion with dd's ortho consultant as to whether she may be a suitable candidate. from my reading it seems having sdr leads to less problems in later yrs. hairymaclary i would love more details whenever you have time. i hope all goes well with your battle. i know if dd is a suitable candidate we have have the same problems. best of luck

Hairy,
I share your opinion about O hospital - I travel to go to this place as it is so good- and for AFO's too, have you been involved with their recent trial? very interesting and I so wish they could get the funding and change the way that AFO's are made for ever....even dd wishes this as she could feel the difference in the standard of the AFO...
uhhm wondering if we have been there at the same time??

please be aware that the treatment in america 'seems' to have such an excellent success rate
and whilst I agree with ops for children with disabilities to help them(and am currently facing major surgery prospects for dd within the next 12 months possibly)
the reason for this 'excellent success rate' is because they seriously pick the patients that they will operate on- in order to keep up this high success rate..

Hello, I'd like to join! DD3 is 10, quad spastic/athetoid cp. Born in UK, we now live in US. She had a g-tube fitted this summer (stuck around 35lbs in weight for the last 3 years), and the biggest change has been her grades at school - she must have been too hungry to concentrate before. She uses a power chair - just grown out of it, so starting the long process of applying for a new one, eye-gaze communication device, gait trainer, loves playing on the ipad... We do get party invites, and this past weekend I left her on her own at a party for the first time - it was the cinema, so I knew she would be sitting in one place until I returned at cake time to feed her. Seems like nothing to an nt child but a huge step for me/us. Sometimes I feel I have to step out of my comfort zone to help her "make friends" such as becoming a girl scout leader so that she would be in the group from the start, and going to every party - being the only mum in the swiming pool is the worst one for me, but that's my issue not hers!

Can I just say how lovely it is to see you all here I hadn't a clue that there was so many of us!

M-cheese (forgive the lack of 'm's - am very lazy ) Yes to DLA. Defo worth it. We were initially awarded low rate care for dd (too young for mobility component). We asked them to look at it again and dd got middle rate. We spend it all - on private physio. Seriously.........dd would not have done as well as she has without DLA cos private PT is £70 for an hour and we don't have that kind of money. Plus the petrol and parking costs. It makes me wonder why I didn't train as a PT!! Basically if your child needs more than one hour extra care a day than a NT child you can qualify for middle rate. If less than 1 hour extra then it's low rate. If night care is needed you qualify for high rate. dd defo needs more than one hour extra care a day, but as yet doesn't have night time needs. A disability worker helped us to do the DLA forms. Is there anyone at your local council who could help you? Your early support worker should be able to advise.

Ferryman - welcome Have family in the West of Ireland (Galway) Beautiful part of Ireland Right....SDR. You can contact Kristian Aquilina @ Frenchay Hospital, Bristol. If you google him you will get his email address. PM me if you can't find it and I'll give it to you. He is very approachable. The hospital do the same form of SDR as St Louis and I think they've done about 20 ops so far. Some PCTs fund, some don't. We are looking into it for dd. First step is to see if she meets their selection criteria. We've asked GP to refer dd there. Hairy is right about most people preferring the newer type of SDR as opposed to the one offered in Oswestry but the choice of what type of surgery to go for should be based on your child's clinical profile. It is very difficult to get informed opinion on SDR since most of the professionals involved in our childrens care have either never heard of it, are partial to urban myths about the op causing paralysis or not being suitable for children with CP unless it's very severe...............or just not interested. Tbh I've been shocked at how ignorant the HCPS are about it. NICE guidelines for SDR were issued a year ago. dds's Paed has only just received them. It's a disgrace. Hairy is right to mention the PT aftercare. If dd was accepted for SDR in the UK we would probably have to look at funding the PT ourselves to ensure she got the quantity and quality of PT she needs.
I'd also recommend Henry Ford's dad's website. Google Henry Ford SDR. It's a great website in my opinion. Also SDR for UK. Some good pre and post SDR videos.
Hairy - is the same type of SDR performed at Oswestry done in the US as well?

Madwoman - thanks for that suggestion. I'll look up that type of walker. dd just has the traditional type of kaye walker with 4 wheels. dd runs with it and swings on it.........I can understand why she does it but my hair is a lot greyer I have to stop her lately cos the ground is wet and slippery with a lot of leaves everywhere.

Those of you who are getting fab PT for your dc..............where do you live? Perhaps we need to move

Bumping to keep on front pg in case anyone else comes along

hi wentshopping dd2 has the same dx but is mild/mod, she's 8, and we moved to canada . and weirdly, i'm running the brownies...

how amazing that the g-tube has had such an impact on her grades! wow! sometimes you get benefits you hadn't seen coming, and then in hindsight think, well, that actually makes perfect sense, why didn't i think of that of that before?! and yay for parties and cake x

hi madwoman at parallel lives!
Agree absolutely about hindsight! Another advantage of g-tube is sneaking in medicine when she is sick - usually end up with half of it running down her chin or gagged back up - not any more!
It's Thankgiving lunch at school today, so first roast turkey of the season! (Which is why I think she spent ages on the computer last night trying to find a website where Santa would write back to her)
Our new gait trainer is a Kidwalk, and one of the most important things about it is that it fits over the wii balance board for playing wii fit!!

awesome! you have to have your priorities right! we had thanksgiving last month of course, but i'm v jealous and starting to fantasise about christmas though... mmmmmmm i might have to start searching out some mine pies. it's -22 here at the mo. dd2's glasses frosted and froze at the bus stop this morning, so much to her disgust (they are purple and uber cool)we're now back into keeping them in her bag until she's at school