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support/information sharing thread for parents of children with Cerebral Palsy

(1000 Posts)
inhibernation Thu 03-Nov-11 12:59:17

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 smile

inhibernation Fri 23-Nov-12 08:17:35

Hi hairy - lovely to hear ds doing well :-) How long will u need to keep up the intensive PT? Dd goes to the diamond centre!! A half hr session once a week. Ordinary riding as opposed to hippo therapy. Yes - it exhausts them doesn't it. dd loves it :-) We are nearer to the diamond Ctr than Putney or Balham - Surrey borders.

thereonthestair Fri 23-Nov-12 09:24:51

Hairy can you link your blog again please. Would be great to see it. Also when you say it is hard work post op, what doe sthat mean. I'm afarid I can't recall do you and your DH also work? did you have to give it up to do the post op?

Our excellent private physio says she can tell is a child was premature and roughly how premature into early adulthood if she sees their core at all, as it still shows even without CP, and it continues to show however strong they apprarently become.

inhibernation Fri 23-Nov-12 09:43:52

Hi chatee as well :-) Has dd had surgery recently? Is she classed as mild or moderate? Also, if you don't mind me asking, how many Orth surgeries has she had? We haven't met many parents of older children with CP.
Did/does she have a statement?

HairyMaclary Fri 23-Nov-12 10:16:40

In hibernation - we are Surrey borders too! Diamond centre on a Saturday morning. Are you officially in Surrey, if so will PM you a link to a local charity I'm involved with that you may be interested in.

There on the stair - will add blog link. Post op is lots and lots and lots of physio, the bare minimum is three hours per week with a physio and at least an hour of stretches / exercises at home per day. Ideally also one hour long legged sitting with gaitors and one hour tummy lying daily too. We try to fit more in if we can but aim for at least that daily.

Fitting it all in with school, a tired child and other famly life is tricky, not helped by the fact that school for us is over 10 miles away. (mainstream now but he was in a unit and we opted to stay with the friends both DSes had made.) I don't work on a regular basis just do ad hoc supply teaching and noT more than twice a week. One of us couldn't have worked for about 4 months post op as we did part time return to school to fit in all the physio sessions as we did 5 a week for the first 3 months. Unfortunately the NHS has only provided one physio session per week so everything else has been self funded, although we did fundraise as initially we were going to go the st . Louis.

Interesting about the core, bit depressing though as it holds DS back so much and while it can be worked on it's some of the most difficult (and therefore least compliant!) exercises in our routine!

HairyMaclary Fri 23-Nov-12 10:20:37

Blog link here

I've not updated for a few months now and I do have some lovely video of him walking and standing so will try to do that soon.

Regarding working, if you both had flexible jobs it might be ok post op but DH is away a lot with work, about 10 days a month, often at short notice and we just couldn't have managed more.

thereonthestair Fri 23-Nov-12 12:44:49

Thanks ever so for the link, and the understanding of what post op involves. At the moment post botox we have been doing 5 lots of physio per week now reducing to 3 (initially 2 NHS, 3 private) and we can juggle work. I technically work 0.8 but am also self employed (complicated situation) and DS juggles a fairly flexible job. It's difficult but doable and the grandparents also help. It is my one silver lining.

inhibernation Fri 23-Nov-12 13:08:19

Lovely blog Hairy smile

I've PMd you

chatee Fri 23-Nov-12 13:23:59

Hi Inhibernation,
Dd originally diagnosed moderate spastic diplegia but this was changed to moderate spastic quadriplegia as her upper limbs are also affected but not as severe as the lower.
Dd was born with a dislocated hip so that was treatment from birth(ortho surgeon that operated on Hairys ds saw my dd aged 3 days) and operated to correct her hip aged 4 months.
Dd also has a leg length discrepancy to add to her cp.
This is her first major ortho surgery and involved correcting her leg length discrepancy and major works on both her feet (they had collapsed and toes were pointing out wards n bent over each other) for starters but other remedial work very complicated stuff also done.8 weeks non weight bareing in plaster casts for an active 12 year old-followed by 2 weeks(although looking that this could extend as she is still not stepping unaided and finds just standing very painful) but on the plus side she has loved not being at school and I really feel that we have had a quality time together and I have learnt so much about how her cp affects her(especially in relation to schooling and how she feels -negative mainly)
Yes she does have a statement - but academically she can do it -it's her physical problems that are her barrier and I really need to take note from mums net n be more forceful-but I have lost count of the number of times I have to complain as she doesn't receive physio/to as per statement but after seeing all the pain and all the effort she is going through I am going to be more forceful-I owe that to her at the very least.
Dd prior to surgery was very active, swims competitively in disability swimming, goes to RDA, Wheelchair basketball loves boccia and javelin(but struggles to get opportunities for these)
I know from this post that I may have 'outed' myself but really feel that the need to share info and help each other is very important especially as like you, I knew no one with an older child with cp and felt totally isolated as well as living in quite a rural area-think more sheep n lakes than humans!
Hope this helps n feel free to ask any more -some I will pm others I will share here.

Galena Fri 23-Nov-12 16:34:41

Hello again!

We are still waiting for our assessment date for Bristol (a bit cross as we were given some wrong information when we were there before and so have lost a few months).

We have, however, had a pledge for all the rest of our money, so we are all ready if she gets the OK from them.

We're also waiting to hear about the result of her statutory assessment. The Advisory Teacher for Physical Disabilities feels she should get one (and everyone else who has observed her agrees) so hopefully she'll get the support.

We've recently had a new orthotic which is FAB! DD has a real problem with inturning from the hips, particularly her left leg. She had a pair of lycra leggings which worked fairly well, although she would get very tired when wearing them. We had issues trying to toilet train (whole other story, including constipation, movicol and back in pull-ups!) and so they suggested this other type of splint - it's called a TAP splint and is basically a long strip of neoprene which wraps up, around her left leg and then around her waist. It is brilliant, and we go from left toes pointing at right heel to left toes pointing in front and slightly to the left. The only problem is that is doesn't stop her toe-walking and she can't wear her DAFOs over them.

Muffinpig Fri 23-Nov-12 19:43:51

Hello all, just marking place as want to read the whole thread when I get time! DS has mild spastic diaplegia and is nearly 3. Walking fairly well, if unsteadily, with AFOs. We were told at diagnosis at 1yo he might never walk so are very pleased with his progress. Would love to join you as have never met anyone else with CP!

sneezecakesmum Fri 23-Nov-12 20:45:39

Anyone can join here muffin. Its not the masons! grin grin Any contribution is welcome because its often on this type of forum that you learn more than RL or books!

Even though CP is relatively common as a disability there never seem to be any near where you live. We did see a little boy in a disability buggy just as DD and her DH moved into their new house, but the family moved a week later! Hydro pools are a good place, but again here they were withdrawn from the original weekly sessions and not been for a year I think sad

All really exciting about the SDR smile

isw Fri 23-Nov-12 22:00:30

Hi again everyone

Well we are now 8 weeks post SDR and I can honestly say the change to DDs core is amazing. Pre op when she sat on a bench or anywhere her back was very rounded. This was always put down to lack of core strength. She now sits up with a poker straight back. It was the spasticity "pulling" down. Today she shuffled along the therapy bench for the first time. She was unable to high kneel independently pre op but I would honestly say she has processed more in this area in the last 4 weeks than in the last 18. We are noticing so many little things that we had not considered where part of her CP. her main problem is confiedence but that will come smile

It is also hard graft of physio and activities all the time! DH works long hours and shifts and DD only goes to nursery for 12 hours so I rehab is my job! The house is a tip and I do all the shopping online, but already it is so so worth it, please pm me if you would like to know more and the link to DDs Facebook page with lots of photos amd videos.

Galena - DDs tap splint velcroed onto the back her AFO, meaning she could wear both at the same time. Is that an option for you?

We are lucky locally DD knows 2 other children very like her and the same age! And we have Glitterys CP Scotland page. If anyone else is local we are always up for a meet up!

sneezecakesmum Sat 24-Nov-12 15:28:25

isw. Its so brilliant that your DD is doing so well. Amazing, and so pleased the op is being done in the UK now. With prematurity being better managed and tiny babies surviving who would not have survived years ago, SD may increase because it is associated with prematurity and PVL. To have an op that can help children reach better outcomes is just fabulous smile

sneezecakesmum Mon 26-Nov-12 16:21:41

Just heard about a friends little boy who had SDR 10 days in england. He's home for a few days before returning for more intensive physio. His mum says all the spasticity has gone from his legs!!! This little boy had regular botox, baclofen and afos day and night and was still really tight. He was up walking with his walker today. It is nothing short of miraculous and we are so happy for him and his mum who is totally devoted to helping him (despite 2 other DCs) and she really fought for this op. Brilliant grin

inhibernation Tue 27-Nov-12 07:51:23

Chatee - thank you for sharing smile Hope you haven't been outed! I hope dd recovers from her surgery soon. I can see how it would be nice for her to have some precious time off school with mum - for you too. dd starts school next year and we've been told she probably won't get a statement. On h&s grounds alone this makes no sense but factor in inclusion as well, toilet trips etc. and I just don't get it. It's exhausting having to fight for everything - I can understand why people give up the battle as its hard enough managing the appts and adapting the family routine. I'm doing 1 battle at a time! Waiting to hear whether dd suitable for SDR, then it's operation statement!

Isw - glad to hear dd doing well post SDR. Interesting about the improvement to the core. It shows how these muscles can work when the spasticity is gone.

Galena - dd sounds similar if not milder than dd so it's interesting that you've been told she'll get a statement. Shows how variable it is.

Welcome muffin smile

Sneezecake - glad to hear your friend's son is doing well post SDR.

Muffinpig Tue 27-Nov-12 10:20:27

When is the best time to try and get a statement and how do you go about it? DS won't start school until Sept 2014.

DS coming up to 3 so have to do a new DLA application, no idea where I'm meant to find the time for that!

We saw an orthopaedic surgeon for the first time a couple of months ago. I asked him about SDR and he said that in his opinion it is the intensive physio post surgery that makes the biggest improvement. Could this be right or is he just trying to put me off?!

HairyMaclary Tue 27-Nov-12 11:18:19

Post SDr physio has a massive effect, we do far more than we have ever done with DS and we have had quite a lot of input, both NHs and private and done by us at home, before the op. However the difference is that post SDR we actually see an improvement rather than just fighting a loosing battle against the spasticity. DS is nearly 8 and until he was about 6.5 the physio we were doing was having a small but noticable difference, there was an improvement,. From about then on it became a fight against the contractures in his ankles and knees which came on very, very rapidly in spite of increased stretches etc, at this point we were waiting for SDR which he had at just after 7. Watching him deteritorate week by week was very hard, he was already using his wheelchair more and if we didn't have the SDR on the horizon it would have been devasting as the physio wasn't working any more.

Now we are not fighting the spasticity the physio works, I can see week by week improvements 7 months later and there is further to go. He doesn't walk perfectly, but he can now stand still, both in bare feet and splints, this was impossible before. He is far more flexible and the levels of dissociation are amazing. No amount of physio could have got us this without SDR.

DS is classed as having mild / moderate cerebral palsy and pre op was borderline level 2/3 on the gmfcs scale. I suspect post op he is firmly in the level 2, but this will be assessed at this one year follow up. He wasn't bad as CP goes but this even so without this op he would be much worse.

HairyMaclary Tue 27-Nov-12 11:25:21

Regarding statementing, DS is in year 3 and is in the gifted and talented groups for both English and Maths so has no cognitive impairments.

However he has a statement giving him 28 hours 1:1 support per week and fully quantified and specified OT, physio and speech. These are mentioned as sessions of active therapy plus 1 hour per term to attend meetings, make equipment adjustments and so on. This extra hour is important as otherwise they will come out of the hands on therapy time. As part of the 28 hours he gets 30 - 40 mins per day of stretches with his TA who has been trained by me and the physio.

He has had this since his preschool year and it has been adjusted as necessary on his transition from preschool to school and from infants to juniors. As long as your DC is over 18 months old is is not too early to start the statementing process. Your DCs will probably need the help physically as they will get tired much faster, don't get fobbed off by being told they won't need a statement, get one, and get lots of support specified in it. It's a fight but so, so worth it. Eventually I think DS will be independent at school, but he needs lots of scaffolding to get there. Good luck!

Jokat Tue 27-Nov-12 14:25:56

Hi Hairy, thank you for your last post in particular, very informative! My dd wil start school next September and I didn't have a clue about any of this statementing stuff until last week when I asked our OT about it (only because a head mistress at an open day had been surprised when she asked if dd had a statement and I said no) and she gave me a brief summary of how these are usually put in place. Reading about your scenario gives a really helpful insight!

sneezecakesmum Tue 27-Nov-12 22:04:14

Saying post SDR its the physio is rubbish and he has obviously no personal experience. Our friend has seen her DSs legs relaxed for the first time since birth!! He always did lots of physio, conductive education etc.

Muffinpig Wed 28-Nov-12 14:34:31

Hmmmm, so I am being fobbed off! Will need to do some research before I see him next then.

What is the first step to getting a statement? DS not going to preschool until next Sept so is it best to wait until then?

Muffinpig Wed 28-Nov-12 15:15:43

Sorry, another question. DS is 3 in a few weeks and I need to reapply for the mobility part of the DLA, is it best to wait until he is actually 3 or just apply asap?

chatee Wed 28-Nov-12 15:54:43

According to a friend who has a younger child with cp who has taken our county to tribunal and 'done' her research and has every parents dream statement.......
It is better to apply for a statement whilst your child is two years old or before as then your child has to be assessed - no decisions to make about whether they have to assess- it has to be done.
Easy way for a parent to do this is by using the IPSEA website where they have draft letters and you email it directly to the head of your county children's services-just put in your individual reasons(and put in as much as possible-think physical,intellectual,language,emotional and social) as to why your child needs more help than the child next to them-remember in the early years curriculum it is learning through play, child led -why should your child have to wait to put on the dressing up clothes whilst the 1 teacher does an activity with one group and the nursery nurse is changing another child as they have had a little accident?-just because your child can't put on the dressing up clothes as quickly as their friends cos they have cp.

sneezecakesmum Wed 28-Nov-12 16:44:58

Pretty sure the DLA mobility part was done pre age 3. But it wasnt me that did it so not sure.

inhibernation Mon 03-Dec-12 21:34:33

We applied for mobility DLA 3 months ahead of 3rd birthday. It was paid about 3 months late as they wrote to a therapist who had left the job.

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