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 spent ages crawling around on the floor to entice him to copy, but don't know if that helped. Also had two of us, one in front one behind, and literally moved his limbs for him in sequence so he had some 'muscle memory'. And if just seemed to click one day, it probably wasn't from anything we did. He could be in the position for ages, then go towards something and just splat out, then drag himself instead.

I have done some ringing round re getting an appointment, apparently I need my notes first which have been sent to the medical archive at hospital and they're saying i have to pay £50 to get a copy!! so I have written to GP practice manager to see if they can request them for me. Then I need to take notes to GP who will hopefully refer me to a consultant who knows what they're talking about. Hopefully.

Hi, ds was born at 29 weeks. He is 4 and cannot walk independently. In case it helps we have been told the chance of cp for children born at 28-32 weeks is 6 %.

We have no specific reason for him being prem, but the fact of one prem increases the risk of another. we believe 10-20% but no study as no cause ! We decided we wouldn't take the risk again as even 0.6 - 1.2 % seemed too high given ds needs. But ds is more severely affected than most of the children on this thread and he'll be a wheelchair user. if I were making the decision now I may have felt differently as I know much more about what ds can do and focus less on what he can't do. But I'm also too old now and slowly I am coming round to this being the right decision for the family we have.

Best of luck for whatever you decide.

Hi where. That statistic is helpful, thank you.

Is your DS currently a wheelchair user? My DS is 2.4yrs old, has spastic diplegia, he can crawl and otherwise move around, just not reliably walk on his own without falling over. We are hoping a few months with a kaye walker might improve it enough for him to walk more confidently on his own. But they've told us that even if he does walk properly on his own, to expect him to continue to have some problems - like not being able to walk long distances, struggling with uneven terrain, maybe even not be able to jump/run around playing football for eg.

It's a tough decision to make isn't it. But I imagine knowing your child will definitely be in a wheelchair does make a difference.

I sort of wish I'd got pregnant within a year of him being born, when we didn't have any concerns about his future, and we'd have had the decision-making removed...

Babs and Summer - my daughter was full term, not sure of exact cause of CP, but she swallowed meconium and had Group Strep B infection, so either or both of those deprived her of oxygen resulting in damage to her brain.
I cant bring myself to have another baby, age is a big factor, but the main one is i cant go through that awful experience again. For me, birth was not the amazing experience everyone says it is, it was the worst and most heart breaking time in my life so far.

My daughters crawling was the same Summer, she dragged herself along even though she could hold the 4 point position. We did the same as Babs. Just keep putting her back into the 4 point position, crawl around with her, move her legs/arms for her - one day she will just get it. Once my daughter worked out she could crawl much faster in the 4 point position that was it. I'm glad my PT made us persevere with it. It helps them use both sides of the brain simultaneously.

Babs your son sounds similar to my daughter. She cannot even stand up and she so wants to walk. Im pretty sure she has a tight achillies tendon which is stopping her from putting her heel flat on the floor, plus she needs to strengthen her leg muscles. We have a stander which she hates. We dont have a walker yet. She crawls everywhere though.
We are thinking of ordering the Upsee. Have you seen this?
It sounds like the kaye walker will really help, do you have it yet?

Hello all, another new joiner here. And Babs I just wanted to say our sons sound very similar and are the same age. Mine was born at 29 weeks and has periventricular leuckmalcia and CP. Both legs def but also his left arm so presumably he's really quad... He cant stand independently yet but has got a standing frame and got a walker this week which he is now refusing to walk in! He too has just mastered four point crawling and can climb stairs and we are working on his transitions to sitting etc. He's our second, DD is 5 so I can't imagine how difficult the decision for another one must be, as for us this definitely answered the "2 or 3" question. Anyway, just wanted to take the leap and join the board for now, have a good evening all.

I have now also corrected my user name for the correct "too" deary me not a good start :-)

Hi allgettingabitttomuch and welcome :-) I'm still a bit of a newcomer myself to this thread.

My daughter has PVL also but wasnt a premmie.

Hello allgettingabittoomuch welcome from me too .
My dd is 2.5, no formal diagnosis yet as they are umming and erring over whether it is spastic or athetoid/diskentic? I also have another dd who is 5.

Thanks for crawling tips, we will keep persevering, would love her to crawl. lately she has shown a slight desire to bum shuffle which would also be good for her independence. I am trying to not do so much for her, so if she wants a toy she has to get it or at least make attempts too. But it is hard isn't it?

redfox I tried the upsee with DD. Our local physio had one to test out, but Unfortunately our health trust wont fund it, so it was a bit if a tease. DD loved it and it was really nice to walk with her, but It was harder than i anticipated, (but a good workout for the thighs ) and a bit fiddly to strap on. It is quite pricey so thinking about how much we would use it.

summerday - its really hard trying not to do so much for them, i found that one of the most difficult things. They have it so tough but we have to push them unfortunately. When we were away on holiday, it was really noticeable how other kids sit/crawl/stand up with such fluid movements. :-(

My daughter is 2 in a few weeks and no formal diagnosis, i dont know when we will get one.

Thankyou for the info about the Upsee. We really need to get her to weight bear, to strengthen her legs and to try and stretch her achillies tendon. She dispises the stander and we havent been offered a walker, splints or casting as yet.
I was thinking of either loaning the Upsee out to other families after we dont need it/she grows out of it or donating to a local childrens charity for them to loan out.

Did anyone's child have the developmental test at 2 yrs old? We had ours the other day.

Did anyone get a pushchair/buggy from OT?

Yes we had the two year check a few weeks back, DH took him. It was a lot more intense than he thought. Asked him to build a bridge from the blocks, asked him to identify colours, asked him to count to ten, lots of physical stuff. He didn’t/couldn’t do most of it. I think he was in a particularly defiant mood, the terrible twos have struck, lots of ‘NO!’s. So I don’t know how useful it actually was! How did you find it, RedFox?

We now have the walker, it was delivered yesterday. He seems to really like it, DH even took it outside and he walked about on his own. A few people were staring though . I hate it. I was watching him from inside and had a little cry, like a big baby.

Have looked at the Upsee but I don’t think I’d want that, he seems to be getting somewhere with the walker so I don’t think that would help too much. Summer. I also thought it looked quite fiddly – by the time we would be all strapped in he’d have had enough! He can walk, he just needs his core strength to improve and therefore his balance, which will be improved by his proper posture while using the walker. We are also doing some ‘stretching’ of his feet/ankles, which he doesn’t seem to mind at the moment with enough distraction.

Has anyone done or started to think about toilet training? DS keeps saying he wants to wee and poo in a potty, we don’t have one yet – he wouldn’t be able to lower himself onto it very well as we’d need something with some kind of rail support – has anyone been recommended anything? Keep forgetting to ask the physio.

There was lots of rejoicing yesterday at his physio session as he managed to stand unsupported for two minutes, and took 30 unaided steps. These are both records! He is getting there.

Gotta be quick as got an appointment to get too, but re potty training. We are thinking about it, sitting on it before bath and after breakfast.

We got one from mothercare, is the Minnie Mouse potty chair. It is really good for dd, she needs to be put on and off as cant transition but it provides her with a bit more support to sit and hold on, than a standard one basic potties do. I would do a link but I don't know how !

Will be along later when I have more time.

Wow! Brilliant Babs!!
Yep, sounds like the same development test. We had it at 9am in the morning, so i think she was at her most alert then lol!!
I dont really see how it can give an accurate picture, as we are going through the "No" phase too, DD is getting more and more independent and if she doesnt want to do something she wont do it.

We had the building blocks too - trying to thread a shoelace through those red blocks(?) - asking her to point to the 'cookie' picture in a book - she doesnt know what a cookie is!!! Then she asked her where her 'vest' was, i dont use the word vest either, and then she asked where her tummy was - well i call it belly - so i just said "wheres your belly" and she pointed to it.

She wanted her to feed the purple teddy bear or brush its hair, but DD doesnt like teddies she much prefers babies. Then she asked her to point to that dolly's eyes - well this dolly was really small compared to her toy ones she has at home.

I think it was pretty pointless, but interesting to see what the results come back as too.

Thanks Summer, its something that im thinking of too, was debating the BabyBjorn Potty Chair, but im going to have a look at the one you mentioned.

Thanks for potty ideas, will have a look. Been reading a few blogs and general consensus is that it's best to wait until they are fully mobile... Not sure doing potty training now will be much use as he'll still need help getting to potty/toilet. Might get a potty just so if he wants to he can use it occasionally but not do any proper training until he can move around better.

We had an appointment with the 'gait clinic' today, where they videod him walking with the walker and unaided. They still need to review the footage properly but they hinted that splints would almost certainly help. Will see.

Hope everyone has nice weekends

Well I have finally finished filling in the DLA form. Argh, what a mission. And rather depressing, spending so long focusing on his 'disabilities'.

The Physio said we'd definitely be able to get a statement of educational need - has anyone else done this/thinking of getting one? I know it means we could send him to whichever school we wanted which is great, but are there any negatives to having a child with a statement? Don't feel fully informed.

We asked the physio about the potty chairs, she is speaking to the occupational therapist this week so we should have some feedback on Monday. I'll let you know what they say, and if they recommend anything in particular. I know our children all have different needs but it might be helpful.

Hope everyone is well

I hate DLA forms. I scanned mine last time so that the next time I have to do it I can just copy it all across rather than go through all my files etc. which always makes me cry!

oh good idea rumbles, thanks.

Babs. I am in a similar situation to yourself with my dd who has just turned three. I have been keeping up to date and reading your posts. I agree with you about the DLA form it was really difficult. My DH and I sat down over several nights and filled it in but it was really difficult focussing on what she couldn't do and made it seem very real. My dd's physio also provided a report supporting our case which helped. We have also just started receiving extra money for the mobility part which all helps.

In regard to the statement my dd's paed has spoken to the educational psychologist who felt that my dd was to young to be assessed and is to be seen in again in November but her paed felt that she would need a statement and probably one to one support as her balance is not good. She is due for preschool in September next year.

Also we have had OT involvement too. We have been provided with a stair rail and a potty chair. The stair rail is helpful. She has shown little interest in the potty chair so we just continue to set her on her Minnie Mouse one. Also we have been assessed by OT for a grant which you may be entitled too. We are hindered by the lack of a downstairs bathroom or toilet facilities and a downstairs bedroom so we have applied for that. So our case is being held at the end of the month so we will see how that goes.

Let me know if I can be of anymore help. Albaba.

Hi albaba. I emailed a family friend (who is some kind of senco teacher lead) yesterday about a statement for DS and she said that a Education, health and care plan (EHCP) would be suitable. You can get them from ages 0-25. She has emailed me a booklet of info on it, I will send to you if you like? Just dm me your email address.

At the moment we have the ideal set up - flat all on one floor so no problems with stairs. He can climb stairs at my mums though. But we are trying to move house so will likely end up with upstairs bathroom.

DH is seeing the OT on Monday as well as the physio, and we will hear results of the gait analysis.

Albaba our physio too was really helpful with the DLA form, she supplied a report and we also got her to fill in the 'someone who knows the child' section.

Oops hello all, joined the thread then internet concked out! We are just starting on the potty training too. H hated sitting on the normal little plastic potty but at the weekend we got one of the basic poitty chairs from Argos and he is much more comfortable. Still won't wee in the bloomin thing though!

H also had two year check and they've also plotted him on the GMFS something scale? He's somewhere between level and 2 and 3. Know what you mean about just being a 2 year old, he has four point crawled for ages but decided to bunny hop throughout!

dh tried the upsee with H and decided not for us too as we are focusing on getting him going with his walker but happy to ask him for what he thought more generally if that helps.

Hi allgetting - GMFCS is Gross Motor Function Classification System

www.canchild.ca/en/measures/gmfcs_expanded_revised.asp

I think my daughter is between levels 2 and 3 as well.

Babs would you mind emailing me the booklet on EHCP too?

Is anyone thinking of SDR surgery for their kids? Im not thinking about it yet, but ive seen a lot of other families fundraising for it already before their child is even 2. I didnt think hospitals/consultants even consider it/refer you for it until older (nearer school age?)

Not happy with our new physio really...trying to get her to come into nursery is a struggle, my daughter is there 3 days a week now and the staff are really keen to be learning the best exercises for my daughter. She said she would send me the exercise pictures at the beginning of September and she hasnt, i asked her again yesterday and now she wont send them until she has seen her again - mid-November.
OT doesnt bother to see her, because she can use her hands fine. I would have thought there is more to OT than just that?
Do you think i should be asking PT for a stander at nursery as well as home?

I'm thinking of going for a private physio assessment in the new year to get a second opinion.

Ah forgot, also got our 2 year funding form filled out today - so hope to have a reply about that in 2 weeks.