Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

So here we are - thread number 3 to provide information and a source of support for parents whose children have been diagnosed (or not yet dx) with Cerebral Palsy.

Welcome to parents finding us for the first time and welcome back to any who have posted before

We've got an appointment in mid November at the physio 'mobility clinic' doctor. She is the one who would prescribe botox but would also refer for SDR. The idea was sort of introduced at his two year check but only in a 'on the list of possibilities' way and not til he's at least 4/5 in any really serious way I think.

We are lucky our physio is great and only tied by how many sessions she is allowed to offer rather than her willingness to support if you see what I mean. Our OT has sorted both first a floor sitting chair and now a proper high chair. He also has a standing frame. We have a temporary k walker and have an assessment for a longer term one. She also keeps trying to sort a bath seat but we can't find anything that works for us yet. It does all take a while but gets there in the end. Oh and they sorted his piedro boots. He's not a nursery/pre school yet but they've offered to come in when he does. I think we are very lucky that we haven't had to fight for anything yet.

I have been away for the last week - sorry to those who wanted a copy of this Education, Health and Care needs guide that I've been given. EHCs will replace Statements. If you want one just send me a DM with your email address and i will send. Unless I can attach the document in the DM?

Does anyone know if, as our child has (so far) only been diagnosed with CP and not global delay (ie his speech, language, understanding, feeding etc hasn't been affected) whether or not we can still get a statement (or EHC as they are now)? We are moving house and if he has a statement before he starts school it doesn't matter if we don't move into the catchment for the good schools, we can still choose to send him there if he has a statement. Anyone have experiences?

Yes my ds who is 4 and only has a cp diagnosis has a full statement, he'll transition to an ECHP in 2016. His issue is he cannot walk as he is conventional but moderate spastic diplegia.

Getting the statement was fairly straightforward (but I am a lawyer). The key thing to look at is why cp means ds can't access education without support (I.e he can't carry books, food, etc) he needs help with clothes when going to the toilet, he can't do P.E? Plus stuff he needs because of cp, stretches, splints etc.

Do be careful about saying a statement can get you a school out of catchment though. It can, but you have to be sure they can accommodate your child. In theory I knew I could chose any school, but in practice all schools in my area are full of stairs, so I went to look at buildings to be sure the school would in fact work. In the end that was my catchment school.

Hi everyone. I just was wondering if anyone has any experience of seeing a Neurodisability Consultant, what it entails and if they were able to do anything for your child? I have just got an appointment through for my dd.

I am just feeling quite low about things at the moment. My dd is 3 and was diagnosed with having cp at 21 months after not meeting her milestones. A MRI scan showed that she had a loss of white matter in her brain. She has been going to physio now for about 1 1/2 years. When she first started she couldn't even sit unaided so to now be walking unaided is a big achievement. She does have piedro boots and afos but doesn't use any other assistive devices. When I say walking though she can only do short distances, still falls a lot and her balance is not good.

Her main issues are to do with a weak core and balance and coordination issues. She is not particularly tight and we enquired about botox but her Consultant said that it wouldn't be an option for her. She does have a valgus foot deformity in both feet though.

I just worry that she is due for pre school in September and primary school the following year. She will be old for her year which will be a bonus and give her extra time to catch up. She is due to be assessed by educational psychology soon to see if she needs to get one on one support for school soon. I know its probably silly but I was hoping by the time she got to school if we put the work in she would be ok this now seems unlikely.

I just want her to be as "normal" as possible and fit in as I know the children can be cruel. She goes to a private nursery 2 days a week at the moment. It just breaks my heart though when all the other children are running about and having the time of their lives and my dd can't properly join in. It just seems so unfair. I think that what makes things worse though is she is never going to get completely better and that this is a condition that she will have for life. I find that very hard to deal with.

Albaba - totally understand how you feel. Is very hard to see other kids running about when your child is struggling just to stay upright. All I can say is that my DD has a lot of the same issues - weak core, balance issues and could only walk short distances at that age. It should improve with time and lots of practice and strength can really help to compensate for the low tone. It's a long road and has many ups and downs I know

BabsUnited - DD doesn't have a statement (CP but no other issues) but has been on school action plus since she started. The new SEND paperwork means much more input from school and other services though so even if you can't get a statement sorted straight away, they do have to take a much more holistic approach to any additional needs which is a good thing.

ITSNOTHING. Can I just ask what age your dd is now? How does she walk and does she need any assistance? Also how long did it take you to get to where you are now? Thanks Albaba.

She's 7 Albaba, and would say it's only in the last year or so that her balance has improved to the point where she looks steady on her feet. She walks ok mostly now - just needing help when she's ill or tired as she's still a bit more wobbly and unsteady. So it has been a lot of practice (and physio) to get to this point but it has all paid off given where we started from! Horse riding and riding her bike (on stabilizers) has helped enormously as she has needed to develop lots of core strength.

I think it's really positive that your DD is where she is already at 3 and I'm sure you'll see more improvement with time. Hope you have a good physio - makes a real difference both for your child but also your own positivity (having had a range of physio's for DD!!)

ITSNOTHING. Thank you. I aspire to be were you are now. My DD goes to NHS physio once a week and likes her physio and has a good relationship with her which is good. When we first started physio she had a different physio and she didn't take to her at all so liking her physio is half the battle for us. We also took her to private physio once a week for over a year but can't any more due to change in circumstances. We also put in lots of work with her at home.

Santa Claus is planning to bring her a bike with stabilisers for Christmas which hopefully will be good her.

I don't know whether to ask her physio whether she will improve over time or if she will always be a bit awkward? Also I know her physio doesn't have a crystal ball to predict the future. We will all continue to put the work in.

All I want for her is to be realitively "normal" and to be able to get about and do normal things like other children her age. When she is at home I think she is not doing too bad its only when you take her out to social situations that I realise how far behind she is which hits me and hurts me every time.

Morning everyone. Am really upset today. Yesterday we had what I thought was a standard prematurity clinic check up. All normal and boring questions such as what he likes to eat, any particular sensory issues, what he likes to play with etc.

I got the impression she didn't actually know that much about him - she skipped through the existing notes (only pointing out his gestation at birth and then asked me how long he was in hospital for) and started asking me various questions and writing her own summary of his life so far. She asked me if he'd had any scans other than the newborn head scan they did in NICU. I said we were waiting until next year to have the MRI to confirm the CP diagnosis as we feel he's too little for a General Anaesthetic - we have been told by about 4 other professionals (his physio, the neurologist, and others) that he has almost classic presentation of CP - spastic diplegia - and that an MRI won't change the treatment he has been having. So I explained this to the doctor yesterday but she still seemed inquisitive as to why we'd not had it done. When I explained our reasons, I felt she was expecting me to say more so I said instead 'why what do you think' and she said that the MRI can be useful in ruling out other things, as well as diagnosing. So I asked her what those other things were, and she said 'other neurological diseases, some of which are progressive'. WTF. No one has ever mentioned anything other than CP. And now she's put it into our heads that he might have something even worse, that could get progressively worse and worse.

I didn't push her on this, or ask exactly which neurological things she was talking about - I think because I was a bit shocked, and also because DS started playing up a bit and got fed up with the toys he was playing with, my attention was diverted.

So got home and relayed all the information to DH who made me feel like crap for not asking more, not finding exactly what she meant. So we did some googling and discovered some horrendous sounding diseases that are sometimes confused with CP.

Now I dont know what to do. Bring forward the MRI, in case he does have something different like she suggested? I'm really angry in a way, as she said it as almost a throw away comment, but it has undermined all the treatment and discussion we've had so far with all the professionals who seem to know a damn site more about DS than she did.

Sorry that's long. I feel so sad today. Wondering if we're doing the right thing putting off the MRI in case he does have something 'worse'.

Has anyone else decided against MRI? DS is 2.5 now, we were thinking of waiting until 3/3.5, just so he's a big bigger and heavier to lower the bad stats for GA.

OMG I am so angry for you because i have been exactly where you are now, having had an almost identical conversation in one of dd's reviews 6 months ago. (You will see I posted on here about it). I was an emotional wreck after. And found myself wishing dd had CP and not something far worse which was ironic as I am constantly wishing she didn't have it .

We did not want an MRI, we did not think it necessary, we knew dd had a torrid NICU stay and she was always at high risk of disability and for us that was enough combined with the way she is presenting to confirm CP. the medical professionals thought otherwise.

Following this terrible appointment we did change our mind and dd is having her MRI on 4th December.

I really hope I can put your mind at ease with regards to the neurological progressive stuff, because recently we saw a neurologist as a result if the above, She was lovely, we explained our fears about the doctors suggesting a progressive condition. She was not impressed, at all, saying they were looking at the the ever so tiniest possibility and if the child is presenting in a typical CP way then this is the likely outcome.

Hi, if it helps we decided there was no point in an MRI until ds was 3.5/4 and in the end only did it so we could have sdr, until then we really didn't see there was any point. I still don't see there is any point apart from for sdr. I knew ds had cp rather than anything else a scan wasn't going to change that.

Thanks Summerdaydreams. Can I ask why you're going ahead with it if the Neurologist was scathing about the doctors comments? I've been doing some research and apparently GOSH can do it under sedation rather than GA.

Whereonthestair, thanks, what's an SDR?

BabsUnited. It stands for Selective Dorsal Rhizotomy. It is a major operation which I believe the surgeon goes in through the child's back and cuts nerves which reduces spasticity and tightness. It is irreversible and I believe that you have to pay for it yourself. You see a lot of people fundraising for it. I believe that your child needs to be quite badly affected by cp and be tight.

My dd for example is not particularly tight. Her main issues are weak core and balance issues so it has never been suggested to us.

Yes it's selective dorsal rhizotomy. Currently a number of children are funded by the NHS, across a few places in the uk. (Bristol, great Ormond street, Leeds, couple of others). You have to be level 2 or 3 for funding. It is flippantly called permanent Botox. We spent 2 years trying to decide what we thought, hoping ds wouldn't be suitable, but he is and qualifies for funding.

Ah I see. Like Albaba, DS's issues are mainly balance and core, he does have tightness in his feet but I don't think they'd recommend SDR. where, is your DS having it soon? What are the results like/success rates?

Sdr isn't for everyone, and I was anti for a long time, but ds is much more severely affected than I thought even 2 years ago when he was two, and the assessment( which I agreed to to rule it out ) actually concluded he was ideal. Ds will have it in the new year, so in his reception year at school. The results go from no real affect to up a whole gmfcs category. If you are classed as 2 or 3 the results are much better than 1, 4 or 5.

Babs, we decided to go ahead initially to rule out the ghastly conditions the peads hinted at at our develoment review. Then having met with the neurologist, she explained that having an MRI would a) possibly give a positive indication of CP (there is always the chance no damage will show up) which in turn b) would provide evidence to help her qualify for SDR, Botox etc.

in many ways we Feel we will not get a diagnosis without it and it is prolonging the inevitable. DH was more for her having it done and although I can't face knowing what sort of damage there is, I feel that having it done now whilst she is younger and less knowing could be the better option. DH also has experience of MRIs and says it is very claustrophobic and noisy and for that reason I wouldn't want sedation just in case she got scared.

We have since had the date down 4th December, to say I am dreading it is an understatement .

Well we have decided to bring the scan forward, like you Summer. DH chatting to consultant today to see if we can get the referral.

We have the casting on Thursday for DS's splints. Has anyone's DC had splints and how was the casting, was it traumatic? What can we expect the first few days/weeks when he gets the splints? Am dreading it and just wish he didn't have to have all this. The physio told us last week that its likely he'll have to wear the splints for the rest of his life. I hate this, it feels like it's ripping my heart out. My poor little boy. Have to try keeping positive for him though and not letting him see me upset but its so fucking difficult.

DD has had 2 MRI scans. The first when she was about 3.5 was done under GA, she had Botox done at the same time. We did it to check that she had CP not something genetic like HSP but also as we were considering SDR we knew she would need an MRI done. It was fine I had to hold her while she went under which is horrible when they do that floppy thing. She was away for about 30 mins then we joined her in recovery. The second was done recent at 6 as she had some hormonal issues so again they wanted to rule out any changed. It wasn't done under GA and I was terrified! Again it was absolutely fine. She got to choose a DVD to watch. I would suggest something soothing and none singing or dancing ;-) They put ear defenders with ear phones in in her. They had to clip her head into a helmet thing. I then went round the other side of the scanner. She moved through the scanner watching her DVD she could see me the whole time. It took about 20mins I think. She was a total star. We just explained she could give it a go but if it was too scary they would give her some medicine but we would need to stay in the hospital for longer. She opted for giving it a go.

Casting. We told her it was like messy play. I got the orthotist to let her touch the plaster etc first. They put a tubey grip over their leg, put a plastic strip into the tubey grin and then cover with plaster bandage. They then bend the foot into position until it sets. Next they cut it off where the plastic strip is so the scissors don't touch the skin. DD is very jumpy so I just got them to take it very slow and let her play on my phone while it was going on. When she was little we had toys she was only allowed on hospital trips or got a couple of things from the £ shop to distracts. Basically anything it make the trips more like a treat. They get to choose the colour and pattern for the splints. then you go back in about 2 weeks to have them fitted. Then comes the fun of trying to get shoes to fit over them. If you have a Brantano near you they are usually pretty good. I would recommend taking the splints not the child shoe shopping. Take the insoles out and you will probably have to size up. Once you have a few pairs take them home to try on properly. Hope that helps!

Really, really helpful. Thank you so much Kaffeine

Hi all,

Sorry i havent been on here for a while. Not much to report really.

Still working on getting my daughter to stand, its hard going. She crawls really well now, but is reluctant to pull to stand - i think its because she knows she doesnt have the strength in her legs.
Saw NHS physio and she basically said to carry on with what we are doing in terms of using the stander, kneeling, standing at a table etc.

She will let us try a walker at our next appointment as my daughter does initiate steps well when being held.
Still waiting for exercise sheets for home and nursery.

We have also booked an assessment with a private physio which looks amazing. They have the Therasuit and Spider Therapy as well as being trained in Bobath. If there is anyone in the Essex area let me know and i can give you the details.

BabsUnited - could you send me the EHC guide please?

Albaba - my daughter has loss of white matter in the brain too. Her weak core and balance seems to be holding her back from standing unassisted.
Have you thought of trying hippotherapy or hydrotherapy to help strengthen her core?

My daughter is in private nursery 3 days a week, and although she loves it, it is painful watching her fall behind, although all the other kids do seem to love her.

SDR - i think the NHS are funding 150 children - i dont know if this is going to be every year? You can fundraise the money yourself and go to America and have it done.
From what i understand you need quite intense physiotherapy for quite a while, which NHS do not always fund if they fund the operation.

We have a TAC meeting next week (Team Around the Child) - has anyone had one of these?

I'm a bit unsure what to ask. I want to raise the issue of the physio being pretty much useless - but she will be attending.
We have 2 year funding in place for the private nursery which starts in January - but can the nursery also get funding for 1-1 support for example? Nursery did mention School Action Plus to me a while back, but as things are changing with EHC's, I'm a bit lost with it all.

There will be a representative from Pre-School Teaching Team, who I've never had any dealings with, mainly because Education said they would not have any involvement yet because of her being too young. Is this correct?

Also, i will be asking for a referral to Speech Therapy. Her speech is very slow coming. She only has a handful of words. Those that she says are very clear, and she babbles a lot too, but new words are just not coming as fast as i would expect. I know its still early days and her understanding seems ok but i dont want her to fall further behind.

I'm also looking into Conductive Education and Hippotherapy - I've found some local places who do this, im just hoping that i can attend at weekends as thats the only free time we have.

Hope everyone is doing well.

REDFOX. We do take our dd to swimming lessons once a week which she loves which is good. She is really good in the water much more so than her twin who doesn't have special needs. In the water she isn't any different than the other children which is good so we are going to keep plugging away and keep going to the lessons and try and do everything we can to help her.

Albaba - ah thats really good. Sorry it was only a suggestion as a friend who has a son with CP, has a pool at home and said that it has really increased his strength (core) and stamina - more so than any other therapy.

RedFox. No thanks for the suggestion. As I am sure we all do I want the best for my dd and for her to have as normal a life as possible. So anything that I can be doing for her I will do. Any suggestion or tips that anyone has will be greatly received. Thanks Albaba.

Ok just an update on some things which have been happening with my dd recently. We have had a 2nd visit to our house from an Occupational Therapist regarding getting a grant for home improvements which we had to find out for ourselves that we were entitled to as nobody seems to tell you anything! We have already got a stair rail which is useful but our main issue is that we have no downstairs bathroom or bedrooms. We feel that this is holding our dd back as she is not as quick as her sister and it is a struggle for us carrying her up and down the stairs all the time. Anyway the OT said that they had been discussing my dd with the Paed and her projected needs for the future which they said was difficult she is only 3. Then she said they thought that in the future she would probably need a walking aid or a wheelchair and our house would have to be accessible for her. I was just smiling and nodding like this was perfectly normal that my 3 year old dd would need things like this in the future. Not if I can help it she won't! I was just sad for her, sad for myself and sad for what the future potentially holds. I haven't told anyone all this is rl. My parents still say things to me like "she'll get there in her own time" I think as she walks they think she will get there but they don't see that she has no balance and couldn't do anymore than short distances. I tried to explain in a gentle manner that this is long term and she is going to have difficulties but somehow I don't think they grasp that.

Also we have an appointment with a Neuro disability Consultant coming up soon. We had a nurse on the phone this evening getting background information. Apparently the appointment will be 2 hours long and there will be lots of tests including gait analysis videoing her walking. I am nervous about what they are going to say and do. Her Paed while pleasant enough doesn't do much for her. It seems to be us having to push for everything. Anyone any experience of Neuro disability? Tightness is not an issue for my dd so things like botox wouldn't be for her. Her main problems are a weak core and balance problems. Thanks Albaba.