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

goneHaywire I don't know how old these adverts are, but I got to them from links from the Scope website:

www.disabreg.pwp.blueyonder.co.uk/disabled%20childrens%20equipment.htm

for goneHaywire

www.disabilitynow.org.uk/adverts/classifieds

for goneHaywire

www.scope.org.uk/support/disabled-people/independent-living/used-equipment

not sure that there is anything in there. Hope you do find something soon though x

Hi everyday thanks for the info. That is exactly why my dd needs the hand splint. The tucked in thumb but her fingers are also fisted too.

Thank you so much for your offer, that would be great.
If its only Velcro holding it I'm guessing mine will take it off too :)
How is ur dd doing? How is the swimming?

Hi melmo not done pics on here before. Hope this works :)

Swimming is going alright. We've stopped Waterbabies as it was beginning to become stressful (pace too quick for us) but we have mum and daughter time each week in the pool. She loves it :) We are still doing the Bowen which we think is helping.

Thanks for the pics. It looks like a simple design, so should be easy to put on :)
We are thinking of going swimming with ours too but not in a structured lesson. Dd3 is only 1 year older than dd4 so dh and I are going to take them to the pool together at quiet times :)

wowsers, she's kept the splint on after the 'photo shoot'! Dh just reminding me there, it all because HE asked her to keep it on (Daddy's girl!) hahaha we'll see how long it lasts. Might have another go at persevering with this then :)

Hi I'm a mummy of 2, my youngest has weakness in her legs. She's never walked or stood unaided. We are under paediatrics just done 4 weeks of serial casting to get feet to right angles. It's worked on left her right is still refusing to stay flat when put to the floor. We have night boots and gaters.
We are waiting to be sent for blood tests to rule out muscle disease. Physio said she doesn't think it's CP but I've googled it today and freaked myself out. She ticks a lot of the boxes.
She's hitting all of her other milestones fine. It just seems this right leg is gammy.
Does anyone have a little one who has mild CP in one leg?? I'd really like to ask you some questions. I'm going out my mind with worry
Dd 19 months xx

Hi Bedsheets4knickers Our DD2 has not met any of her milestones (sitting supported/unsupported, crawling, cruising, walking, talking, self feeding etc). She has high tone on both sides but is more affected on her right. I would say her CP is mild as she can undertake some independent walking now and is coming along every day. But it's not just her legs affected; her arms (high tone), hands (fine motor skills), eyes (squint) and speech (delayed) are too.

I'm no specialist nor medical person but in your googling did it have any examples of only being affected by CP in solely one limb? I think it is more usual for one side or the other, both sides, all limbs, or upper/lower body to be affected.

Your physio will have helped many patients with all different types of CP. If she doesn't think it's CP then she is probably (not definitely) correct. I would talk to her on the next physio session and explain the things that make you think the condition is CP, so she can have the opportunity to counter these and explain why she doesn't. I begin many conversations with my OT and physio with 'well, I found on the internet…….what do you think?' and they are always happy to discuss. It's very hard waiting for a diagnosis x

Hi thanks for replying. I don't no if it can solely effect a limb. I did see a video of a little girl learning to walk with one leg in a cast. The way she moved her leg was very much how our daughter holds her leg when we try to get her to walk. I must admit I didn't read to much more because I went into panic and have been panicking since about 2pm yesterday afternoon. We have appointment with physio today. Then I started thinking of all the questions physio asked us when she 1st met us. I remember thinking at the time what's this got to do with muscle stiffness but it's not it was asking to see links for CP. traumatic birth, problems in pregnancy etc...
Do you know of anyone who has it in just 1 limb??

ahhh physios phoned in sick.

Sorry, I don't know anyone who has CP that only affects one limb with no other symptoms. But then I don't know that many folks with CP!

Please don't panic though. Googling can be quite stressful and upsetting as there are so many types of CP and each person can be affected quite differently. If you're under a paediatrician, you could also ask them for their thoughts and reasons for them too.

We all know on here how hard it is especially in the early days. Be kind to yourself x

Hi, I hope people don't mind me posting here, I'm looking for a bit of advice. Ds2 is almost 14 weeks old and before he was born suffered a large stroke which as well as severe brain damage has caused other problems. We were told at the time by his neurologist that he is likely to develop cp as well as epilepsy.

Here are list of some of this problems and I was wondering if anyone else thinks this sounds like the begging of cp? He has a lot of feeding problems and relies on tube feeding (can't swallow/suck well), he is very floppy and can only support his head for a couple of seconds, daily he suffers with spasms and jitteriness in his limbs (but he had a normal EEG) and he hasn't met any of his milestones for example smiling.

Thank you for reading this, I'm seeing his paedatrition tomorrow so will mention this all to him. Hope you are all having a good week so far. Louisa

Bedsheets4knickers -my ds hasCP asymetrical diplegia to be exact. Basically it only affects his left leg/calf - he doesn't present a single other sign of CP. he was 10 weeks prem and only diagnosed at 19 months as he wasn't walking independently. We have Physio and we do loads of stretching and exercises with him. He is now 3.5 and you would barely notice it - it's more his balance and coordination than anything. You dc might not have CP but it truly isn't the end of the world if it turns out to be.

ok that sound similar, i think i just freaked. CP never crossed my mind and yest it dawned on me its very much a possiblity. her whole top half is fine and the left leg seems to be fixed my the serial casting that was done. its just this right leg that appears to not want to function. looking forward to seeing physio.

Shelljayne can you see a physical difference in his leg shapes??

Hi, no there is no physical difference between his legs at all.

Sorry to keep asking you questions, can he put his left leg/foot flat to the floor. My daughter can but only for a minute or so before she lifts it off and trails it behind her. Does that sound familiar ??

Hi, no he has always put his foot flat on the floor. The only issue we have is sometimes he can trip over his foot - because his ankle is stiff.

Thanks for the info. So glad I've found this thread.

hello bedsheets - the not knowing is horrible and like you I couldn't stop myself googling. I think CP can affect one limb through to all and the degree can vary from hardly noticeable to severe.

Hello Louisa was ds prem or full term? The things you describe could be early signs of cp, but 14 weeks is still early days, make a list of all your questions for the pead and don't be fobbed off.... Have you got physio starting yet?

Today we had our child development review and I have been completely floored by it .

At 2.5yrs actual (2.2 corrected) I was finally expecting a CP diagnosis - symptoms varying high -normal tone in all four limbs, slightly low tone in trunk. Physios - NHS and private all been going along lines of spastic.

Today, they hit me with the possibility of progressive metabolic disorders [shocked] Ffs or athetoid CP - all apparently down to he way she is presenting ! She is not always stiff enough? And when she has to use her arms, she moves her legs forward.

I mean, she has no writhing movements in hands legs or face, she eats well, no involuntary movements - I am so confused and worried??

They want an MRI. If it is not progressive disorder it they expect basal ganglia damage?? Prior to this meeting, We didn't want her to have and MRI knowing her history, didn't think it necessary. Now I do, god what sort of progressive disorders are they talking about ??

And all I know about athetoid CP is that children and adults have problems with speech and speak funny, and selfishly I feel so sad, I don't want her to talk funny (please I hope I don't offend anyone by saying this)

Anyone any ideas??
I thought spastic cp could have varying tone high and low?? Ae your little ones stiff all the time???

Hi to the thread newbies glad you found us

Summerday My DD has athetoid CP - basal ganglia damage. Try not to Google it as its very scary to read about but my DD has none of the obvious writhing movements and her tone fluctuates from high to low on effort. Some days she does look stiffer than others and yes, when her legs are working hard she will stiffen in her arms too. I would have thought you'd have seen any obvious writhing movements by now with your lo.

Hope you don't have to wait long to find out. Any ideas when they'll do an mri??

Thanks original, It is scary, I have googled it, I know its never a good idea but I just can't seem to help myself and it sounds terrible.

I know, CP scared me when we started this journey, its taken time but I had my head round the spastic diagnosis and things were plodding along just fine - but now this. I know deep down its just a label and it means nothing - it is all about how dd presents(and she really is progressing beautifully) but this bloody appointment has resurfaced all my old fears?? And throwing progressive disorders into the mix is just mad.

How is dd doing? How is her speech??

Between the tears, I told them that I wanted the MRI as soon as possible, so I guess we have to wait for a referral to neurology. Just hope it ones through sooner rather than later.
for replying.