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

Well, I've had a reply from a couple of the Calvert Trust places.
Lake District says:
We would be very happy to run an activity holiday for a group of families - this is something we do on a regular basis and we would make sure that everyone in the family was equally involved in the activities. We do not have a minimum age for children - we would just like you to be aware that the younger the child the less able they will be to take part fully in the activities.
We currently have plenty of availability for August next year so you could have your choice of dates.
Our tarrifs for August next year are as follows:
Full Week (Sat-Sat): £599/person
Mid Week (Mon-Fri): £399/person
Weekend (Fri-Sun): £245/person
These costs include accomodation, all activities and three meals a day.

and Exmoor says:
We work with groups of 12 people per group, including siblings and parents, and everyone takes part in the activities together.

Children 5 years and over can take part in the activities, children between 3 years and 5 may not be able to take part in all the activities and children under 3 will not be able to take part.

To access our group discount rate you'd need to book in multiples of 12, thus paying for 10 people and receiving 2 spaces free. If you make a booking for 2013 before the 1st September 2012 we will honour the 2012 rate. So for example one group of 12 booking for a full week break (Friday to Friday) in August would be £6950.00 including all meals, accommodation and activities. Monday to Friday would be £4250.

Exmoor whole week works out at £580pp and M-F is £355pp - although these are group discount rates - with fewer than 12 people it would cost more.

Thanks everyone, Can they tell from mri if there's more/less chance of developing epilepsy depending on where damage is? Suppose I'm just thinking aloud here, but that will be one of my questions.

deb, my dd3's neurologist said that the cp increased her risk of epilepsy (the statistics show that people with some kind of brain injury are more likely to have a seizure at some point in their lives), but my (non-brain-injured) dd1 actually developed epilepsy - a childhood type which she has now grown out of. They did not feel that there was any increased risk in dd3 having epilepsy because her sibling had it. DD1 had an mri after her diagnosis of epilepsy, which only showed a small insignificant cyst on her brain, but I believe it was the eeg which showed up the seizures and the type of epilepsy that she had.

DD3 dropped off happily at camp yesterday. Now my car has broken down, but at least I am not having to find wheelchair transportation.
Hmm, wondering if I can plan next year's trip back to the UK around a few days at the Calvert Trust?

Deb, we were always told dd2 at higher risk of epilepsy, until neuro debrief at 4. Neuro said obv can't be ruled out completely, but the area normally affected in children who have cp related szs was not affected on dd2, so szs unlikely. She hasn't had any since the newborn period (was heavily dosed up for a period which knocked them on the head. No recurrence sofar). In my experience, they will be honest...

Thanks you two

Hi deb. As the others have said ask the question, but I think that if your LO has reached 4 then epilepsy is far less likely to occur. no guarantee of course but the longer a child goes without problems the less likely, especially if it is mild. DGS (like mwita's DD) fitted big time at birth and had tiny vacant episodes throught 6-10 months(ish) but he has hopefully outgrown them forever, as epilepsy is scary. I dont know why I think 4 is the magic number for not getting epilepsy, but I will breathe a sigh of relief when DGS gets there! (think it is just hocus pocus really, but keeps me happy)!

My DD also had seizures after birth. However, without wishing to tempt any fate she is 5 now and has never had another one since the phenobarbital stopped them and she left NICU.

Like Madwoman said, it can depend on the area of the brain injury as to the likelihood of further seizures - we were told DD was at no more risk of developing epilepsy than any other NT child.

Thanks everyone

Packing like mad in the wentshopping house as we are off to the UK for our annual visit home to catch up with grandparents cousins etc. A month away from therapy, the heat here and a chance to indulge in our favourite British things. It seems I have taught dd3 well as today she said on her device "I love John Lewis lunch" :)
Camp went really well - I think she put on some weight and it was less than a week! She has a scrapbook of photos of her doing all the activities - horseriding, karate, archery, but most of all smiling!

We've just got our initial consultation appt through for SDR in Bristol. 15th Aug. Scary!
Exciting too, though!

Thats brilliant galena. Hope things go well, scary def!

Hi all

First time here, and I hope this isn't a total hijack ...

I'm setting up a charity, and particularly interested in teaching young disabled children to swim (then potentially coaching them up to a good standard and feeding them in to mainstream swim clubs).

I'm interested where sport sits on your radar after finding out that your child has CP, and what experiences you've had (if any) of sports clubs and helping your child develop their physical abilities.

Thanks!

DD is only 3.2 and so we haven't done a lot of 'sport' as such. However, we have registered her for a gymnastics club to start in September (if she copes with me not being in the same room as her), we go to a SN swimming group (not proper lessons, more of a splashabout) and will be registering her with RDA when she's 4 as they won't take her before that. The gymnastics club is mainstream but the coach has experience of children with CP.

I would love for her to be taught to swim in a focussed group and then fedinto a mainstream club - my friend's daughter has CP and swims and national standards. I'd like the same opportunities for our DD.

I have not been able to find anywhere locally to take my DS swimming. i take him to the pool and he can do a few strokes, but because he can't walk everyone runs a mile. he's 2.2

keepplaying - that sounds great! There certainly isn't enough for children with physical difficulties and disabilities where we live to help them access sporting activities. We are fortunate enough to have a local RDA which is our main 'sporting' therapy and it has been brilliant for dd.

We would love for dd to learn to swim but I don't feel I could put her in for mainstream swimming lessons because she's frightened when out of her comfort zone and stiffens up. I don't think many mainstream swimming instructors could work with that issue so I think it will be down to us to teach her how to swim at some stage.

Hiya,
for everyone that is struggling to find sporting opportunities for their children with cerebral palsy, have you heard about cp sport? they are based in the midlands but do various activities all around the country and are very knowledgeable in what they do and 'know' lots of other people based around the country who offer activities for children with disabilities.
Another organisation is hemihelp(I don't know much about this group but do know a few children who have attended their activities.
EFDS English Federation of Disability Sports are another great organisation who organise lots of sporting opportunities to all different disabilities, they have a Festival of Sport Day aimed at 6-16 years olds in a few places around the country and they are brilliant days, go along to one (even if it means travelling for an hour or two/ and missing a day at school) as all the people at these organisations will help ' open doors ' to you to events that are local to you

I have posted links to these groups in the acronyms section before.......

Drop me a pm if you wish me to search through my knowledgeable database for local contacts to help you on your way!

Hi All, newbie here on this thread... dS2 8mnths has very stiff hip joints and leg muscles. He was born three months premature so has been under the care of the hospital. He has been having physio for couple of months now and we have been offered weekly sessions in the hydrotherapy pool for an hour. Just been told today that DS2 might have CP. He was seen by a comm paed who suggested that due to the tightness in his hips and leg muscles, there is a probability he might have CP, it all depends on how the physio goes over the next few months. Knowing my luck he probably will have CP, so I thought I better be prepared for it. I have got a few questions to ask if you don't mind.

1. How old was your dc when they were first dx"ed?

2. How often do you do the physio in a day? Is it minutes or hours? What is the optimal amount?

3. Does hydrotherapy help?

4. Is there anything else I need to be watching out for development wise?

5. I read somewhere that Dx can be overturned, how is that possible?

I am pretty sure I will have more questions, I will come back if I remember them.

TIA

I'm weeks behind as usual...but info may be of help.
Hairy - there's a Whizzkids group held at St G's School on various Saturdays and they go off regularly to activity camp at Sevenoaks, they seem to have a good time.
I know a lad over near you who is a member of the local Phab club and goes off camping with them.
Whitgift SNAP has day camp with sporting activities held on the Whitgift site.
And the Mersea Festival every August is great fun.
DS will turn 18 in November and is part-boarding in Kent so is beyond all this. His latest 'thing' is gliding.

Hi dev. welcome to this thread. My grandson is 3.9 and dx with cerebral palsy at 8-9 months. It was always on the cards as his birth was a disaster! Spastic diplegia (tight legs and hips) is more commonly associated with prematurity. To answer your other questions - I help my DD around 4 hours a day with physio, but it is not all physio, he is a toddler (non toddling!) and will only cooperate with so much! He goes to nursery now so it has gone from initially 4 days a week to 3. DD obviously does other stuff with him but the walking frame, trike etc is with me. Basically you need to incorporate physio type exercises into everyday life. This book here this is also pretty good but expensive here
Hydrotherapy was absolutely brilliant and he had that weekly for 3 years, but is now discharged take that with both hands!

CP should not really be diagnosed until the age of 2 because of a big research study that showed some very young babies who were diagnosed showed no developmental delay by the time they reached 12 (ish). CP can evolve til around 2 and then the true picture shows itself. Developmental milestones are the major things to watch out for, but get the first book it is totally brilliant and do the stretch routines. Your physio will also show you what to do as most of the 'therapy' is done by parents. Look into alternative therapies too and stay optomistic!!

Arghh. The first book i recommended is the brilliant one!

Thanks sneezecakesmum to be honest, I am still clutching at straws that it is not CP as I am not sure we are ready to deal with it. His muscles were vey tight since he came home but they are getting better with physio. DS2 was a breech baby and was stuck in that position for almost 8 weeks before he was born so we always put the tightness down to that. Ah well, the paed has said that if it doesn't improve in the next 3 months, it will most def be CP.
Thanks for the link for the books.

dev9aug - my DD is 5 and we still don't have an official CP dx as it is pretty mild and she is still making progress. Docs are often really reluctant to dx until they are absolutely sure. That study sneezcakesmum suggested is really interesting and you might also find this article interesting as your DS was premature www.comeunity.com/disability/cerebral_palsy/cerebralpalsy.html

Dev. Sometimes babies who have a rough start in life are tight at first, eg clenched fists, and then over months become much looser. DGS fists were clenched. Now he uses the left and the right one is opening most of he time. He's still got CP though . Shouldbes link is very interesting and pretty much say this so don't stop hoping, but I would still ask the physio about stretches as tight legs is very much linked to prematurity. DH says hope for the best and plan for the worst!

Thanks sneeze, I am also a firm believer in that mantra (smile). Thanks shouldbe, its definitely good to hear about your dd.
He has been under the care of the physio for Couple of months now. Since CP was mentioned at the last appointment, we have increased the physio considerably. Fingers crossed it will make some difference. I will check out the link and the books. Will report back after the next appointment to see what difference the physio has made.

Have put up a new topic re our new communication aid as we're a wee bit

DGS has been out on his trike for 3 days in a row now the rain has stopped and the difference in his pedalling ability and his neck strength when riding is noticeably better. Mind you yesterday it was 29C so we were all a bit wilting and today cooler, which is better for his type of CP.

He also weighs a ton and looks like hes grown 9 cm since the PEG. Official weigh in soon, but my back says he's heavier!