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

have you applied for dla, jake?

brains and mri. mmm. sometimes you can get quite severe brain damage but few outward signs, and sometimes a pretty clear mri with very severe disability. it's a minefield, for sure.

fab that he's starting to walk - piedros are grand. dd2 had them for about 5 years . how old is he? we were told dd2 wouldn't be verbal, but she started speaking about 3 and won't stop now... have you found the hemihelp website etc? not sure if they have a forum as well...

hello, anyway!

Thank-you so much for your speedy reply. Jake is 16 months, haven't applied for DLA as its seems so hard to get. Had a look at the website and the basic criteria is the child must need more assistance than a "normal" child of the same age. With jake being 16 months I figure all babies require about the same amount of care, although we can't take our eyes off him for a minute as he falls a lot and he has a nasty habit of banging his head on the floor for no reason. It's so hard to know what to do without guidance!!

Hello:

I have a DS who also has hemiplegia (left sided). He is nearly 5. We found out when he was 6months old. We never had an MRI scan done (did try, but it was a nightmare and we didn't want to put DS through it again) - but I do know that some people can have clear results but still have CP and some people have brain damage, but no symptoms of CP or anything else. This is the reason we didn't want to go through it again.

Our little boy is doing so so well now!! Admittedly we have done loads and loads of different therapies which I'll be happy to share with you if you want to know. However, I think the thing that has helped most is just that we have helped him and encouraged him in every aspect of his life - encouraging him to do all the things he can't do - putting in a lot of extra effort with every step of his development - and its all paid off.

DS is riding a bike now without stablisers. He can nearly swim. He can't use his left hand much and has a little bit of a limp - running and climbing is a bit harder for him ... sometimes not possible, all of it that his friends are doing. But DS is not bothered and I really mean that!

I was so upset at the thought of DS not being able to do everything his friends can do, but now I see that everyone is good at different things and it doesn't matter if we can't all do exactly the same as everyone else.

Have you been on hemihelp website?? Go on that forum, its really really helpful. Its a charity for people with hemiplegia and their families.

Any other questions, please ask x

outof/mad - dd2 8yo athetoid cp
hilda/there - ds 19mo spastic diplegia
surviving - dd 4yo athetoid tbc
inhibernation - dd 2 yo spastic diplegia

hilda/there - sorry to hear ds was ill over xmas but glad to hear he is progressing so well with gross motor skills and doing all the normal things that almost two year olds do such as being naughty

mum to jake - to qualify for DLA you need to show that ds needs more care than a child who doesn't have additional needs. The fact that ds needs constant supervision due to balance issues/falls etc. is a good enough reason to apply. However, I would advise that you get a report from his paediatrician or physio therapist to give best chance of being awarded the right rate. dd was initially awarded low rate care but we asked them to look at it again and physio did a report. Dd then got middle rate.

I typed a great long reply but then the computer lost it. Typical.

Jake we applied for DLA for DS when he was the equivalent of 13 months. Like inhibernation we got lower rate to start with then middle rate when we asked for a reconsideration. I spent ages trying to decide whether to apply, and then about 60 mins doing the actual form (I found that bit quite straightforward, although depressing, and in my case did not get anyone else to help or look over it, but I know lots of people recommend getting help) I found it depressing but it was clear DS was entitled to it (and we spend it on private physio sessions) Once it hought about it I realised that because of the CP I did do more, for example at the time I filled the form in I explaiend that I can't leave ds in the bath without him toppling as he can't balance very well, (not that I would anyway but depending on his mood bathing ds is a 2 man job) It takes longer to dress him because of the AFOS (like piedros) which have to be fitted each time I change his nappy, I still have to carry him from activity to activity which a normal child would not need as they could crawl, I have to carry him up stairs etc. I also explained he still needed to be fitted in a chair bag rather than sit on a chair when eating a snack. And whatever you think about what his comparators do if you watch their paretns they are not doing as much when the children sit, read, swim etc as you will undoubtedly be doing as second nature. Then there was all the info about the physio etc and the exercises he did. I did send report from the neonatologists from the time he was born, along with reports from his physio and the nursery and I know that the DWP also asked for a follow up report even if the reports I had already sent ran to about 30 pages. I had some other issues to include such as breathing issues and inhalers as DS also has asthma and hypermobility but I truly believe he was entitled to the money in any event.

Sydney welcome. I have a relative who has a similar story after their son caught meningitis in the middle of the outback which even with an air ambulance delayed help being received. He is still behind where he would ahve been but after 5 years can now walk again, and his speech and fine motor are coming on. It has taken a lot of therapy to get there, but I know he is getting there. A lot of the learning is very similar to the learning I have for DS so I am sure that others with older children and more knowledge will help and answer whatever questions you have.

hi syd, yy, of course you belong. the not for profit i volunteer for (well, one of them) does lots of work with brain injury survivors. there are lots of similarities and i think acquired brain injury must be doubly hard for both the survivor and the relatives.

jake - just the fact that you have a cp dx will go a long way to determining receipt of dla. fill out the forms and include all professional reports, and paed's details. we were advised to apply at 6mos. 16mos is old enough to know that he isn't going to make a miraculous recovery overnight, even if his progress is steady. it is re-evaluated periodically and so care needs would be adjusted in any case. do apply. i felt much the same, much a wise sn hv said, look, she's oonly doing so well, because of all the extra support she gets... she won't without it.

it will be useful in a year for adapted trikes etc, trust me, these things cost money...

Welcome sydney, my son (adopted) was reaching all milestones 8-9 months. His birth mother was off this planet with heroin (sorry don't like being unkind) and unaware he had pneumococcal meningitis and arrived at hospital virtually dead. He was left Deafblind and CP however despite his disabilities although unable to walk he can communicate albeit limited by using "on body sign language" and by using objects of reference. We are so proud of him! He is13 and like your DD cannot feed. Although in a different situation to you I still grieve for the boy he should have been I wish you all the best and please try to look forward and I am only an adoptive mum so goodness knows how you feel

Thank- you all so much for your supportive messages. I have printed off the forms and will sit down tonight to start a draft copy. Sometimes you just need to hear the words from someone else to realise what you need to do!!

Good luck - it can be hard work, and a bit grueling, but the first time is the worst. Think in terms of the 'worst day' to make sure you include everything - so if there are days when physio is extra hard because he doesn't co-operate, make sure it goes in. We all tend to try and ignore those moments in our heads, or we'd go crazy, but they do need capturing for the forms.

And, for all you hemi parents, dd2 started cross country skiing last night in an adaptive group. Dd1's friend x has left hemi and it's her second year doing it. This girl flies . She wears an afo and used only one pole, and she was amazing. She's 10 now, I think. Unless you realized she was only using one pole, and wondered why, you honestly wouldn't have known to watch her cover the ground. In summer in shorts and watching her walk it's v noticeable, but on skis she's brill. She's also learning to snowboard this year.

Hello everyone, old and new, nice to see new faces (iyswim) hope you all had a good Christmas and New Year and are settling back to normality. We are looking forward to this year as just before Christmas we got a letter confirming that DS will be getting funding for SDR on the NHS! It only took nearly a year and letters from the MP but never mind we've got there. This year will therefore be chaos while we deal with the op and the long recovery / rehab period but I'm really looking forward to the end result, while trying not to set my expectations too high! No date set yet but it should be sometime within the next 6 months.

Mad - for the list - DS age 6 nearly 7 with spastic diplegia.

Will catch up with what you've all said now!

Wow, hairy, that's amazing news. I only know of people who have fund-raised and gone to the us. I don't know anyone who has managed to get this far on the nhs - you go, girl! It will be soooo interesting to see what happens. You must be veering wildly between excited and terrified!

On silly iPad, so will add to list later...

Hi all, have chatted to some of you in the past.

My DS is now nearly 4 and a half and has spastic diplegia, he walked independently at 3.2 yrs and is now at full time, ms, school. He had Botox last June and is due again end of this month - the difference since Botox is just absolutely staggering, his physio says he has had the best result she has ever seen in 11 years.

Think this thread is a fab idea, will be lurking and contributing (if I have anything interesting to say!!!)

outofbody did you find the trike really useful? Have been looking around at them, we tried a bike with stabilisers in physio but there is no way DS can manage it. We bought him a scooter for Christmas which he can just about manage with help, but definitely be difficult for him outside.

Have been trying to cut and copy to add to list but on iPad and not having much success! So for anyone else who can:

Verycherry - DS, 4, spastic diplegia

Right, off to clean bathroom before DS4 gets up......

Welcome sydney and JakeandSophiesmum!

Think this is the list so far:
outof/mad - dd2 8yo athetoid cp
hilda/there - ds 19mo spastic diplegia
surviving - dd 4yo athetoid tbc
inhibernation - dd 2 yo spastic diplegia
hairy - DS age 6 nearly 7 with spastic diplegia.
Verycherry - DS, 4, spastic diplegia

Verycherry - would your DS be too big for one of these? www.elc.co.uk/Blue-Didicar/124699,default,pd.html

My DD can't yet manage on her scooter really - I end up pulling her along on it!! On the plus side she managed to stand on one leg for 4 seconds yesterday - this is still really hard for her with her dodgy balance so we are definitely moving in the right direction. Can't wait to tell her physio...

We had a kitten trike to start with and used the parent handle at the front at first, then moved it to the back, and eventually she got the hang of the whole pedal thing. It was pretty good, as she started with a full pelvis and chest support, and ankle/ pedal straps etc, but we could take different bits off as her development moved on. Tomcat trikes are also pretty good, but they were having some problems with their supply when we were in a position to order.

If you can, it's worth trying to get to a kids north/ south / middle and trying some out... A lot of physics will run days when the rep for a particular comes out too, so if you let your physio know you are looking. (well, in the uk and Canada anyway lol, I assume it's the same in the us!)

We also ordered an sn trike through the nursery - it had a triangular base so was a lot more stable... They don't make them very big though, so by the time she was able to get the hang of it she was too tall/ old really. That said, we've just adapted a skateboard by putting a handle on it, and now radio flyer have started making them and shipping ( they were only available in the us before)

Where is dd skiing, sydneyscarborough? (nosy)

Happy New Year everyone. DD3 born in UK, cp diagnosis due to birth injury. We now live in US, and dd goes to ms school, uses eye gaze communication device to speak, write, surf internet etc; she had g-tube fitted last summer to supplement feeding:

wentshopping dd3 age 10, spastic/athetoid quadriplegia

Sydney - I have just been reading your blog (not all of it yet, though), and I see your dd has a mytobii - my dd has an eco, which is essentially the same thing. It did take her a little while to get used to, but she had been using a switch operated device since the age of 3 (head switches). Her communication has really come on in the past few months, and she now uses the device to skype family back in the UK. They have to be rather patient while she "composes" whatever she is going to say!
DD also has a power wheelchair - she got it when she was in kindergarten - dh was quite resistant at first, but therapists encouraged us to get it because the vestibular movement feedback would be beneficial to her in terms of balance, and getting the feeling of where your body should be in space when you are moving yourself around. After a year of persevering with a joystick - her hand would fly off it in shock every time she moved forward - we tried a head array (all the controls are inside the headrest), and it took her about 20 minutes to master it completely. Now she "runs off" in the grocery store. I don't know if this is something you can consider for your dd?
If you get a chance to travel while you are in the US, do consider San Antonio for Morgans Wonderland. My dd loves it (and only a 4 hour drive away!) www.morganswonderland.com/
Good luck and let me know if you need anything!

sydney Yes, ms school = mainstream. She's in 4th grade, and gets pulled out for extra help in reading and maths. She started special school here aged 3, then transferred to pre-K (infants?) in a mixed regular-ed, and special ed class, and has been in mainstream ever since. The first couple of years were difficult in that too much time was spent on "isn't she cute", and not enough on getting reading/math started, so she is behind on those. But, then again, some regular children are behind on those too. (dd1 and dd2 are in gifted and talented programme, so I always set the bar too high!)
Morgan's Wonderland advertises itself as the first park of its kind in the world, but I bet there are smaller accessible parks near you. My dd loved driving herself up and down the playgrounds without me.

We moved over here when dd3 was a baby, getting 1 visit from physio every 3 weeks... of course she is much older now, but she goes to a private therapy clinic now three times a week after school for pt, ot and speech. I would say she has got to the stage with her communication device that she understands how it works better than some teachers, but needs speech help to formulate full sentences, and widen her vocabulary. In state mainstream school here she has pt, ot and speech help, but the pt and ot is more of a monitoring capacity to check she is positioned correctly. They do not have the time or staff to do intensive pt with her, for example.
On funding - the school district funds her communication device and TA; everything else we use our insurance or pay ourselves. I know benefits etc are shrinking in the UK, but it would be nice to get some help with big purchases (thinking of out-grown power chair... our insurance will only buy one chair, so I am about to start that long process, knowing that we will be paying in full for her manual chair)
Something I am always amazed at is how innovative European designs are for equipment - companies like jenx, alvema, even tobii - the US doesn't seem to favour new designs - school buses... I rest my case. For this reason we have a Swedish power chair, and I want a European manual chair, as I am sick of the poor quality parts on her current one. (Now I am probably contradicting myself, wanting "help" and the most expensive brands. Ho hum)
A lot of the differences can come down to the people involved in your care, don't you think? We have been very lucky with the TAs at school, but you never know how that will go. Likewise, therapy.

Sydney DS had his first lot of Botox at our local district general under the ortho's - one consultant has a particular interest and is very pro Botox.

I wasn't actually there, his dad took him (I was at ascot had paid for everything and bought new outfit etc before date came through, felt dreadful as have been with him for every single appt etc but his daddy is more than capable of looking after him and DS didn't care a jot!), dp said they were very efficient, intranasal midazolam and a two very quick injections then home!

I began to notice a difference immediately, his gait improved, his stability improved and within days everyone was commenting on how improved his walking was. He didn't fall more or have any of the other side effects we were told about. I can tell its wearing off now as he is swinging and internally rotating his left leg again and can only walk short distances - slowly!

His ortho consultant was v impressed with the result, he was videoed pre and post Botox and had 6 wks of physio post Botox. However, I gather from the reaction of the hcp's involved, that he as been 'lucky' to have had such a good result - maybe he has just responded well to it?

His physio did say before he had it that the effects can differ madly from child to child.

How did it differ in the US?

It's really interesting to hear about your experiences in the US, and wentshopping's and outof's in Canada - I do think that the NHS can be very reactive - well actually the whole social/medical care system/model here is reactive. We've been lucky to have a fab physio but our paed is rubbish - lovely, but rubbish! And we have only just had OT involvement and are being told DS won't get a statement...... This is a child who needs constant supervision outside, in a unit that allows the children open access to the outside area. This is a child that will probably use a laptop for all written work, and oh yes he can't even carry his own lunch tray - and probably never will........ Interesting times ahead I feel.

Happy New Year everyone!

I have a 17mo toddler with moderate (grade II hie) due to a medical error during delivery.

Initially high tone all over her tone became normal all over except for stiff shoulders. She crawled and now walk/runs everywhere, we have had poor access to physio deprived the pediatrician wanting her seen regularly. Last October time physio gave a hemi CP dx but we haven't heard from her since, paed disagrees stating its too early to tell. We start at brainwave next month. OT said when we saw her dd is able to manage and although intensive therapy would help we wouldn't get it.

um. Christmas was good, quiet but nice, dd currently has a raging temperature, awful cough and cold and we're taking it in turns to have her sleep on us as she is really exhausted and is refusing food, only wanting milk.

oh, sydney, jack frost looks great. i love reading about other adaptive programs. do let me know how you get on!! we've just been awarded a grant for $10k worth of sit ski equipment for our program and we are soooo excited. we had two old sit skis that were quite limited as to who could use them, but these will be all singing all dancing and we'll have junior pro ones too. yay!

cherry, i agree re differences and the nhs (i may be slightly biased as dd2 was my only nhs baby out of three, and the only one that got broken during delivery ) but anyway. we're waiting for our first neuromotor clinic appointment at the mo, and i'm a little bit excited to see what they will look at, and what they will suggest. dd2 is v able now but there are all sorts of things that they could decide to look at, so we'll see... i know a lot of kids here have had gait assessment as a matter of course, and we were told it was unlikely she would ever be assessed in the uk, but i do wonder if they will do it here...

(in the uk we were also told that dd2 wouldn't be able to cope with a manual chair as her retained reflexes meant that if she tried to self propel, her head went down and she couldn't see, but that because she could walk using a frame, she wouldn't qualify for a power chair. fortunately these days we cope with the odd day out in the manual, and she's independent, but i do wonder about the rationale...