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

I have to confess to finding the "terrible palsy" a bit funny too I thought perhaps it was just my sense of humour (!) Being a HCP I guess I'm quite direct about these things. Though I did find it sad too. I think dd already realises something is different. I guess I need to start thinking of what to say to her.....

If any of you are in London or the South and would like to meet up some time I'm up for it.

I would have really LOL at the 'terrible palsy' if I hadn't been so that she came out with it! I might use it when we get around to having the 'conversation' as she gets older and more aware

We are SW and would def be up for a meetup if not too far!

surviving - I am glad you were not offended by my comment. I was a bit worried about that after I sent it. I thought about you today when we went to pick up ds from school. A child asked ds why his sister is using "that thing" (kaye walker". Ds said very matter of factly "she's got Cerebral Palsy and her brain doesn't work properly so she can't walk without it" and he carried on walking. I was a bit I'm glad he understands about her condition but I will need to have a chat with him so that he understands he needs to be sensitive about how the info is passed on. This is the boy who told the postman that my waters had broken while I was on my lunchbreak

ds aged 13 with CP, would love to chat to other parents with kids with cp.

i am in sussex

supermum98 I too have a ds age 13 with CP also deafblind due to pneumococcal meingitis.Would love to mull things over with someone.

I have a DD who's 2, she has Athetoid CP as a result of a birth injury. She is pretty severely effected physically but is a very thoughtful, vibrant little girl. I've got a DD of 4 months too and it is bitter sweet at the moment to see her master rolling over in 24hrs while i've been working on it with her sister for the last 2yrs!

Bumping

A few weeks ago DD and I went along to a local scope charity, I got on really well with the volunteer we met and after seeing the facilities that they offered I decided to sign up to a six week course of their early years group which would give us some up front therapy ideas for increasing Dd's right hand use. We have heard NOTHING from our physio since the dx of CP in October so want to find help to enable cross patterning as well as making DD use both hands together and relaxing her shoulders, lots of messy sensory play when seated etc while we wait for Brainwave in March.

Anyway.

I was contacted at the end of last week by the early years team leader to go down and meet them (again), so Went down there yesterday. Firstly there were two women ether not one and I felt like we were being interviewed, secondly they paid barely any attention to DD and thirdly they seemed really disorganised. They were saying that they had thought Dd would go into one group but she was doing too well and so they think she should go into another group, fair enough, but there was either some politics or difference of opinion and they were politely arguing. Which was weird. Then the older lady gave DD a shopping trolley of play food which she chewed and all the wrappers came off in her mouth!

Talking to them I was quite honest and said that the paediatrician thinks it is too early to make a concrete dx and he feels Dd has 'learned non use' of the right side as opposed to being unable to control that side. So we need to encourage her bilateral arms movement. The two women were almost inferring that there is nothing wrong with a CP dx and that I should be grateful she has so much movement, which I am, but their attitude bugged me. Then lastly they said that they couldn't endorse any therapy programmes but they did follow conductive education ideas, and they thought quite a lot of brain gym, which has been widely rubbished.

And this is the ONLY therapy centre near us, and as I said at the beginning of this essay (sorry, hubby has fallen asleep listening to me rant) our physio seems to have dumped a CP label on us from a great height and then vanished. So a smudge disheartened, I hope so much that the NHS OT assessment next Tuesday is positive but not really holding my breath.

Your DD sounds fab and I am 100% sure she will progress brilliantly. Its always emotional with CP or any problem with these children, and the slightest down comment can leave you deflated.

Ty, it's trying to get the therapy which I am worried about we got the paed letter today from last appointment and he makes no mention of CP but does say that there is a preference which is greater than that exhibited by simply choosing one side to use. Paed promised to chase physio and find out why we were not given any therapy but his letter just says that he would like DD to be seen regularly and is using this letter to ask the physio to comply. I was hoping for a roasted physio but I guess that wasn't to be. I am considering asking for a different one thou as DD hates her.

Welcome to newbies

Slowburner - sounds as though they are playing the wait & see game. This came up in a recent SN support group I attended and the common view was that either it's because they genuinely don't know or because diagnosis has cost implications. Very frustrating for you. Agree with sneezecake though - your dd seems to be doing very well

i think my daughter may have cp she has hypotonia , hyper extension and she needs splints on her hands and feet she has a bigger weakness on her right hand side of her body and she had a really bad birth in special care when she was born on cpat machine

Hi Beca74, your DD sounds very simelar to my DS he's 3 now has quad CP (hypotonia /athetoid) hyper extention issues he is supposed to have splints on his feet but I really do believe that it makes the hyper extention worse so have slacked lately
DS also had a bad birth was on a ventilator for 12 hours (before he pulled his breathing tube out) then when he was sedated he needed a bit of CPAP to keep him breathing.
How old is your DD?

she's 14 months on friday.she was full term when she was born but my waters broke on the tuesday and they left til the saturday until they induced me by this time i had infection that passed thro to my dd

Thats quite poor care you got there, are you looking into a claim against the hospital?
DS was also term(ish) 37+4 but my placenta ruptured while I was at home, (no labour) and starved him of oxygen he was near death when they pulled him out but managed to get him breathing, thankfully his heart didn't stop but the beating that it was doing was not effective as there was no oxygen to pump around.
We were told he would be critical for 48 hours and probably severly brain damaged. He had an MRI when he was a week old which showed minor damage to 1 part of his brain, but unfortunatly thats the bit of the brain which controls the motor.
Compared to what the doctors said he would be he is not overly bad, yes he will have issues for the rest of his life but he is determined (but also lazy at times) to do what he wants to do!

no not taking action against hospital.we're going to wheelchair assesment on friday and shes having splints fitted on the 15th hands and feet,but she keeps smiling bless her

Little sneezecake is getting pointing! We've waited 3 years to see that cute little finger point to things

Ah, the little things in life that make you

Well done little sneezecake!!! DD was late pointing and she has certainly made up for it since! DD has French doors to the garden in her playroom, one day I was drinking tea and idly surfing with my back to the window when DD jumped up and started pointing outside. We were at the point at trees stage and it was a windy day, unable to summon the enthusiasm needed to show excitement at the apple tree moving I muttered something, DD got terribly excited and continued to point. I turned round and there was the biggest black cat I've ever seen staring at DD. Quite freaky but it was nice to see that pointy finger!!!

dd2 was term and 9lbs. she looked ridiculous in scbu next to the preemies. like a complete fraud. she was born with a hr of 28bpm, so good job they fished her out when they did, really. made no effort to breath.

but roll on 8 years and there's no stopping her, really.

My DD was born on her due date, i had a placental abruption and she was born with apgars of 0,0,0 and went for the newborn cooling treatment. Has anyone elses DC had this treatment? I know what you mean about a term baby looking ridiculous, there were all these micro premmies and then this giant big baby stuffed into her incubator!

my dd was 7lb 8ozs and was the biggest baby in special care,

Rosie um my daughter was a cooled baby, message me if you want to know more about a parent support group for HIE babies :-)

Can't wait for DGS to point at everything. He just missed the cooling bit and often wish it had been done, but spilt milk etc. Sadly he looked as though he belonged in SCBU (think skinned rabbit!)

My god daughter was cooled at full term ,incredible treatment. My ds wasn't at 27 weeks tho