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 i ever given you this link before?

new-vis has loads of stuff on tube feeding and promoting oral stuff - i really like it. (dd2 was ng-fed initially as she had no suck or swallow) it's put together by a slt, so you do get a sensible discussion about pros and cons, and it's very pro-oral, as well as practical about tubes. have a look around the site anyway. (i think i linked to an article, but the 'feed your mind' button is a good place to start). it doesn't have to be forever, and a bit of extra weight might help him fight off the germs better.

ds1 had a willy infection at about the same age and he drank gallons, so try and think of it as just one of those things. poor wee man. at least it will be out of the way before the holiday!

Special thanks to Chatee for the info will check it out later. (everything is later with me at the moment).
A lot of us are talking about the physical problems,has any one any issues with short term memory problems? My DD has problems with maths, her ed pysic has said some children with CP can have short term memory problems. This is a problem in maths because you hold a number in your memory while you think about the next part of the sum. Now the teacher knows this is the problem she is allowed to make notes (not quite mental maths,but hey).
This problem does not seem to effect any other area of learning, doing very well in all other subjects.
Has anyone else had this?

My DS (7) has problems with his short term memory - he's the supposedly NT one! The school have done lots of work with him to improve auditory memory and it is slowly improving although he is still very behind with his maths. Ironically his reading and speech are excellent - it just affects maths and problem solving skills.

Thanks for that madwoman. The bit about failure is right but we need to take a positive angle, especially with DGSs health and energy level issues. There is a waiting list so we'll keep pushing those calories for now. We'll look at the PEG thing as a way of just increasing the calories and maintaining oral feeding but without having to push the 'one last spoon' and 'one for daddy' stuff!

omg
survivingwinter ...are you my twin

My DS (7) has problems with his short term memory - he's the supposedly NT one! The school have done lots of work with him to improve auditory memory and it is slowly improving although he is still very behind with his maths. Ironically his reading and speech are excellent - it just affects maths and problem solving skills.

my dd will say things like
" when i was in year 3 i knew my 2,5,10,3,6,9,4 n 8 times tables and she did but (and we shouldn't do it) we say it must be nice to live on 'chatee's ds' planet' as he really is away with the space men sometimes and does struggle with maths

i don't want to 'push him' but deep down am getting a little worried as he also struggles with learning to swim (and he will be doing that with school after xmas) and took ages to learn to ride his bike and scooter(oh the comedy value that was !)
but on a positive side he has lovely hand writing and dd looks like a spider has strteched across the page sometimes(especially when tired)but is about to progress to using a netbook for most lessons.

Thank you madwoman and surviving winter. Just what I needed a little bit of perspective, and mainly I do know we are doing well but it doesn't always make it easy DS has now got a stinking cold, not sleeping etc so I am on the look out for bronch or other respitory issues which in the scheme of things remain more worrying. Onwards and upwards

Hi all, hope you don't mind me posting here my DD doesn't have CP but SMA and is a full time wheelchair user in MS school - manual at the moment but her muscles are deteriorating so will be in an electric wheelchair from Jan. She has a full time one to one carer at school to assist her but have just found out the main TA is going to be removed from the classroom - I am concerned that the level of support she is receiving is going to go downhill - is there anything I can say or do?

is she statemented for ft 1-1? what year group is she?

i might be tempted to pop into school in a friendly manner and ask if they can reassure you that it won't have an impact? you can couch it in terms of popping in to chat about her new chair and logistics maybe? (just so that they know you are on the ball...)

they do try to phase out TA support as classess move through the school - i think mine had them in yr r and 1, but only a pt TA in yr 2. dd2's TA was ft 2:1 - she had her hands full with dd2 and a little girl with VI - a motley pair!

i would keep it to a friendly chat at the mo and they will probably reassure you. but keep an eye in the new year...

sneezecake I have mentioned my dd's g-tube earlier in this thread - we held off on it for so long, and every visit to the dr she hadn't gained weight. We went ahead over the summer, and it was a great decision - I know my dd is quite a bit older than your dgs, but we have found the following advantages - if she's sick (always sick the second week back at school, after time away from other people's germs) the medicine goes straight in the tube, so no spitting it back, or worrying about not enough getting swallowed;she sleeps most nights (from waking 5 nights per week); her school grades have vastly improved as she goes to school with a full tummy, oh and she has put on a little weight - it's mainly energy levels where it is most obvious. We still give her all her meals, an extra snack and bedtime milk orally; the tube is used for morning and evening supplemental feeding, with the morning one done before she wakes up. We are not even considering overnight pump or anything like that. One of her drs suggested if we were really unsure about g-tube to try ng tube for a couple of months for supplemental feeding, but as she is 10 yrs I decided it would be too obvious, and awkward for school, physio etc going around with a tube taped to her face - but could you consider this for your little dgs?

Hi wentshopping (me too-xmas pressies all bought!)
DGSs mum and dad and me have all come round to the idea. We've heard loads of stories like yours of holding off as long as possible, but being the best thing once its done. tbh the though of an op is terrifying if we could wave a wand and have it done it would be in tomorrow!

ng tube not an option as he'd have it out in a flash! (pulled his breathing tube out day one - setting a precedent!) Overnight feeds also out as he is a restless sleeper, but again the plan would be a big milky feed before bed in the hope he will sleep more soundly. ditto wonderful ideal of giving him nourishment when he's poorly, more energy for the physio. At the moment he still needs an afternoon nap. Previously as soon as he had a growth spurt all the extra eating he did would go vertically, so still looks like a child in a famine zone. Yesterday babysat while mum worked and it took me 40 minutes for breakfast, which he puked and 40 minutes for lunch. plus the hi cal supplements and the petit filous, I was tearing my hair out and just seemed to be constantly feeding him. DD is much better as he doesnt mess her around .

With a PEG we can top him up hourly on mcdonalds milkshake (cal loaded apparently) and no aggro! Its 4 months on the waiting list so we will really try to get his weight up again and if he gets on the chart we may hold off, but also need to get him healthy for the op.

He's getting better on his tummy and rolls himself around a lot, does the peg opening interfere with this? Did it take long to heal - he loves his weekly hydro? Can you get something to go round his middle so a) cant mess with it b) protects it from knocks? Is it uncomfortable for your DD?

Hi sneezecake (and I'm always shopping, not just for xmas!)
My dd has very strong tongue thrust, so while you can get a meal in her mouth, most of it comes back out to decorate her clothes, and she's not great at liquids so getting a good feed in her tube, and it all staying in there is just brilliant. I know what you mean about the 40 minute meals.
I think I mentioned before that we live in the US, so some of the actual procedure may be different, but basically she had the op on a Friday, then first tube feed Sunday, home on Monday. They put a tube placement in first - small incision into her stomach, then from the inside made a hole that the tube would go in, sewing the stomach lining to the outer wall of the abdomen so that the ""tunnel" that is made won't leak anywhere, then left a tube in place which stuck out about 5 or 6 inches, but was flexible so you could tuck it into her waistband. It was held in place with a small plastic disc with dissolving stitches which meant you couldn't pull the tube out . This stayed in for 4 weeks, with no swimming, although at one point I thought it was looking a bit red so I took her back and another doctor said "of course you can swim, its 110 degrees outside", on the proviso that it was a heavily chlorinated pool - ie our own, where we could monitor the water - so we didn't go in any public pools on holiday, but I imagine your hydro place is super careful about chlorination given the people who use it? In this 4 week period we were travelling, so I devised "button trousers" which was a large square adhesive bandage with a slit for the tube to protude - it looked like a pair of trousers - this covered up the site in case of over-zealous pat-downs at the airport! Then she went back and they pulled out the tube and inserted the g-button - it looks exactly like the valve on a beach ball, and the same size. I was a bit paranoid about her chest harness of her wheelchair catching it, but am calm about that now. When she goes in her gait trainer she wears an aerobic "slimming belt" bought from a sports shop over her clothes - covers up everything so you know even if she moves quite vigorously she can't get the button caught on anything. As for healing, it still has a little red crust which dries and re-crusts all the time - apparently this is normal as the body is trying to heal the hole shut. In terms of getting back to normal - she was a bit sorry for herself on the first day, but happy to lie in hospital, play ipad and receive visitors after that. I feed her pediasure - again cal loaded - and someone really helpful on mumsnet gave me a UK website for while we were in the UK this summer - otherwise you can get it on prescription - you don't need to refrigerate it so you can have a bottle in your bag for whenever. I am a bit surprised that she never touches it, although looks in the mirror at it. She loves the fact that she doesnt have to taste medicine, and I really appreciated it when we were travelling as a full tummy took 5 minutes instead of an hour and a change of clothes. Hope that helps - sorry I do go on a bit....

Hi wentshopping, dont mind you going on, even though it all seems a bit daunting, we need to know what to expect. I am sure we can get pediasure on prescription. The hydro pool is very clean as it belongs to the hospital physio department, so hope he's not out for very long. We have heard of g buttons and know a little boy with something along those lines, but have actually never asked! Sounds horrible tbh but got to look at the plus side, we will be shoving calorific fluids down it like crazy! DGS only sticks his tongue out when excited as part of his extension pattern, not when eating, but seems so not interested in food, you'd think it was sawdust, and we think some of the gagging is now behavioural. It did stop a few months ago, but with all the bugs from the germ factory causing snotty vomits and buggy vomiting, he now associates food with puking. Again the peg may reduce that behavioural thing.

right ladies, i'm off to rl for a couple of weeks (my annual mn-fast ) so have yourselves and your loved ones a relaxing and safe christmas x

see you in the new year for our next round of challenges x

Merry xmas madwoman.

Merry Xmas all. Will pop back in the new year and catch up properly.

Happy New Year all.

Lots to report but will be back soon. Marking my place Hope you all had a good Christmas

Oooh are we back!! Happy new year

happy new year! (tis madwoman. i find myself inadvertently locked out of my username )

dd2's downhill ski programme started yesterday and she had a ball.

she has also decided that she needs to change her dance class, as tap is too hard. it's an admission of defeat as she really really wanted to learn, but i think it's the right decision and i'm soooo proud of her for making it.

madwoman - I think tap dancing would defeat most of us to be fair but I can imagine how hard it was for your dd to have to make that decision. It makes me realise that I need to start thinking about these situations and how to tackle them with dd when the time comes. Glad dd enjoyed the skiing.

surviving - how is dd doing?

sneezecake - belated props to your dgs for mastering the art of pointing Did he enjoy Christmas?

dd had a blast at Christmas time. Totally got into the present thing, the tree, lights etc. Not much physio over Xmas due to us being away, visiting friends etc but we borrowed some tripods. She hasn't mastered them yet but we're taking it slowly. Independent walking is improving. On friday she took about 10 steps. Walking is more controlled as well. Obviously she is still very stiff and she toes in (one side more than the other) but it is awesome to see her walk any steps unaided It makes me feel very emotional. We are still waiting for dd to be referred to Bristol. Slow progress there. Hope to hear something soon though. She is also still waiting to see the Orthopaedic team at the Evelina. We are in referral land at the moment

tripods dd2 was more dangerous with them than without! kudos for giving them a go! have you got a trike btw? i can't remember who's got what... dd2 loved her trike... she's got a mega cool low rider thingy now (still a trike, but low like a go-cart) that she can get on and off by herself. we just bought rack for the damn thing as it won't fit on a standard bike rack, and we have to put it on top of the car in a great big basket thing and ratchet it in. i stand no chance of doing it alone. fortunately spring is a long time off, yet.

we are about to enter referral land again for the neuromotor clinic. it's been ages since we were on a waiting list!!! very odd. sometimes you have to let real life take over for a while and let the physio take a back seat. glad you all had a great time x

can we make another list of who/ which kids are on teh thread btw? i'm a bit decrepit and can never remember how old everyone is:

mad/ outofbody - dd2 athetoid cp 8yo

please add so that i can jump start my new year brain!!!

Hello everyone, Happy New Year.

Tis Hilda, but I outed myself inadvertantly last week and so have namechanged.

Anyway I have DS, now 19 + months corrected age with spastic diplegia. He seems to be doing very well, but who knows. Now walking with his toddle truck thing, both at home and nursery and crawling/climbing up and down stairs. Also getting better at standing independently, and getting to a point where he will not be helped with some tasks and wants to cruse over gaps etc between the furniture. His crawling is now ordinary almost all the time, even with his afos on.

Christmas was crap as he got bronchiolitis again, and I spent the night up with him every 30-45 minutes on boxing day - 27th. No-one else would do for him. Then had to entertain my parents and sister after dh had compeltely lost his rag with them the day before. Anyway as soon as they left DS was fine again.

He's in full on terrible 2 tantrum phase though and getting so frustrated when he can't do things. Then finding it hilarious when I tell him not to do things (liek turn the tv off, or spill milk on the floor).

ugh at christmas, but wow, he sounds like a bundle of fun at the moment, he's doing so well!

outofbody/madwoman - the penny has just dropped - have been asking you lots of q's over on the other thread!!

inhibernation - so glad your dd continues to progress with her walking - how exciting Who/where are you being referred to in Bristol?

Oh and a refresher is a good idea too outofbody:

Survivingsummer - DD is 4 with hypoxic brain injury and as yet undiagnosed mild CP (athetoid/fluctuating tone)

lol, that's funny. i'm trying to be really obvious - i think i did say over there who i 'really' was... i just can't get back to 'me' at the mo!

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

that does remind me of one our old physios - before we had the re-dx mri (she was spastic quad before) the physio referred to dd2 as having lots of 'athetoidy' movements. so she was 'athetoidy' for ages, rather than athetoid. so dd can take the 'athetoidy' mantle for a while, surviving.

Hi, I would like to join this thread! My Ds was diagnosed with left hemiplegia in September 2011. This has all come as a shock to us as we never considered cp to be the diagnosis. He has had a MRI scan in December which the consultant has written to us with the results saying it was normal and doesn't change his diagnosis. We assumed that the cp would show up on MRI and now feel confused. He is just starting to stand and try to take steps - but only with his piedro boots on. He doesn't speak but is such a happy little boy. It would be nice to chat to other mums and dads with children who have cp as it all feels a little lonely. We only see the physio once a month and the consultant every 3 months. We haven't even heard from our health visitor since his diagnosis.