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

[Dev9aug]

waves to fellow night owl, Merry Xmas to you inhibernation and everybody else on this thread.

We have finally decided to move to Richmond at the end of Feb, so I am up trying to find a place to rent...[sigh] really should go to bed now...

madwomanintheattic from what I have read, you seem to have a fair few moves under your belt. Any tips on how to go about securing provision and what to look out for when we do move.

so far, the list reads as

Find House
Nursery for ds1 and ds2
availability of ABA tutors for ds1
availability of private physio/OTs etc.
Sort out Paed/referrals etc for ds1 and ds2.
Apply for a SA for ds1
contact children's disability team for ds2

[inhibernation]

Yes Dev nighttime is the only free time I get! Hope you get provision sorted :)

[thereonthestair]

I am bumping this partly for my husband who wants a read as we are going to be asking about SDR soon and wants to see what others are saying about it. He will also guess at least my user name so I may well name change some point in the near future.

I hope everyone is well and looking forward to 2013

[Verybusymummyof2]

Hello everybody, happy new year!!
My little girl turned one, so she is now 9 months corrected. Sheis still not rolling but is grabbing her feet mre when on her back and is giving me a bit of hope in the sitting department. She is managing 10 or so seconds unsupported, the thing that stops this being longer seems to be her tendency to arch backwards to the left.....is this a cp thing and does anyone have any tips or advice on how we can stop this if at all??

The atnr is still present but only when she is lying on her back sometimes, will this remain forever or evntually be integrated??
and I am noticing her hands do rotate inwards slightly.

To sneezecakesmum, who recommended the book - thank you!!! It has been a fantastic buy and as a result her tummy time has improved massively!! I am hoping this improvement will have a knock on effect!

Sorry for all the questions but any answers or tips, would be appreciated x x

[thereonthestair]

My ds used to do the arch thing. At the time I didn't think it was a cp thing. Now looking back I think it was.

As for how to stop it - he grew out of it. We used to put loads of cushions and stuff behind him, and things he wanted to play with infront of him and then let nature take its course. Things like a bumbo also helped as that helped him get used to that sitting position. The other things that help are all abotu core strength, swimming, swings etc to get those muscles working.

[inhibernation]

Thereonthestair - if your h wants info on SDR I can recommend a great parents forum though it's in Facebook so you don't have anonymity. It's open to people who are just gathering info - not just this who have made a firm decision. Lots of files as well with pre and post op video footage.

[inhibernation]

forgive the typos.......iPhone grrrr

[thereonthestair]

Thanks I may finally have to get onto facebook then against all my better judgement if that's where the information is. the things we do for our children! Could you pm me the details ?

[inhibernation]

sure - will do later. Agree - I only started using fb properly when I joined that group. It's informative and supportive :)

[sneezecakesmum]

Verybusymum. I should take shares out in that book EVERYONE says how brilliant it is! Just so pleased we can pass on what was recommended to us!

DGSs ATNR age 4 is starting to integrate very slowly. Not really sure what does it, but I think it is superseded by normal movements as they develop. Try to put her in positions where the ATNR doesn't kick in. The more children do bad (useless) movements the more ingrained they become and the harder to break. Ask your PT and OT for ideas.

The arching backwards is probably part of the extension pattern, which is basically not isolating movements, common with basal ganglia damage. Not sure if your DD has this? Can't look back or I will lose this post and cut and paste dodgy on ipad! Still wanting a magic wand to stop this ourselves! One tip is strengthening and stabilising the trunk and neck. One thing we used with great success was a babeco baby station. Not for CP as such but our PT was v impressed as the upright back and sides provided safety and security but left a big enough gap for DGS to have to work the trunk muscles. Bumbos are good but take care with sacral sitting which is not good for CP.

Sitting well with hands free in front and focusing play forwards and to the sides also helps with ATNR integrating I think.

[survivingwinter]

My dd also did the arching backwards but it slowly improved so she was sitting ok by just over 1 year old. I think it's just about perseverance with core strengthening so the arching doesn't unbalance them. We did lots of kneeling exercises at this stage to improve core strength which really helped.

DD also still has a bit of atnr at times but doesn't affect much now other than handwriting..

[sneezecakesmum]

baby station

[sneezecakesmum]

Agree surviving re ATNR. Out PT said you've only got to look at people sunbathing ..lots of ATNR patterns there!

[inhibernation]

What's ATNR?

[sneezecakesmum]

Assymetrical tonic neck reflex. Its a primitive reflex, like the moro reflex that the child integrates into normal movements in the first year of life. its called the fencers pose as thats what it looks like! When the babies head is turned to the right the right arm extends and left arm flexex (bends). The legs usually do the same thing. It reverses when the head turns to the other side. Its a pain in CP as it will prevent normal movements if it is strong. So a child looks suddenly to the right and the arm flies up in this uncontrolled way. No idea why it is retained or much what stops it!

[inhibernation]

Ah thanks - never heard of it before.

[Verybusymummyof2]

Thanks Thereonthestair and sneezecake.
Your advice and support is invaluable!!
Really am working on her core strength, with lots more tummy time so hopefully this will sort the arching out eventually - it is driving me mad!! Sneezecake not sure where the damage is, have not had or been offered a brain scan, only ultra sounds in NICU which didnt show anything. Will look into the baby station.
The atnr thankfully, doesnt seem to affect her movements as she can come out of it and cross the midline, it just seems to be her default position when on her back. I guess I should try to avoid laying her on her back, but it's the easiest option at times.
On a plus note she really has been grabbing her feet a lot today, and toppling to the side, I am hoping the rolling will follow.

Has anyone experience of abr?? I have just ordered a book to gain more info....

[inhibernation]

It's great that she is grabbing her feet. Dd didn't do this until really late even though she was crawling at 11 months. dd used to really dislike tummy time but will now voluntarily do it to watch tv.

What kind of CP does your dd have?

[sneezecakesmum]

Ultrasounds dont show much apart from bleeds i think in newborns. An MRI is needed really. Looked back and like inhibernations baby verybusybaby was a prem! So less likely to have extra pyramidal damage and more likely PVL. That is all general speculation though! Just going on the general rules of birth/pre birth problems. Really really good sign when babies play with their feet. DGS never did. Sometimes babies diagnosed early with CP show no signs at all by the age of 12...big research study showed this, so if a baby seems relatively normal early on its a good sign

We looked into abr and it is very parent intensive. It seems to get good results but i am very on the fence about it, just felt it wasnt for us as DGSs chest seemed fairly normal to us if a little very skinny.

[Verybusymummyof2]

Inhibernation -we don't have a diagnosis yet but from everything I have researched and from my gut instinct that all is not right, and her 'symptoms' I strongly suspect CP. I asked consultant and physio outright but was not given an answer just a waffled explanation of how time will tell and that cp is an umbrella term so not really useful. It seems her main problems are increased tone in her arms and her hands rotating slightly inwards, although she can use them just very awkwardly and not fluidly. Also very mild increase in tone in legs. I don't know if this means she will eventually be diagnosed with quad CP??

I am a bit confused as to why some babies get a diagnosis early and some don't. Is it down to hospital policy/consultant?

Sneezecake - we asked about an MRI and consultant said that she didn't think it would be useful as it only gives a snapshot of the brain not what is actually happening, again this seems to vary from area and between consultants. I don't know if this will change a bit further down the line.

She was prem, 13 weeks and had a torrid time, respiratory wise. Is still on oxygen. I was half expecting PVL from the head scans after 2terrible episodes, but none showed up although again from research, I learnt that them not showing does not necessarily mean they are not there... We were warned ops he was at significant risk of disability because of her tough journey. I guess it's a waiting game......

[Verybusymummyof2]

Sorry forgot to add about the abr cupcake - What is the connection between the child's chest and abr? Not really read into into it ŷet?

[inhibernation]

dd's cranial ultrasounds were clear. MRI is useful if you want to look at treatment options. Dd has spastic Diplegia and we started looking into SDR as soon as we got the diagnosis. By the time she has the op we'll be more than 2 years down the line. The MRI was essential assessment criteria. It is true though that an MRI doesn't necessarily tell you how a child will progress. A child with marked damage can do well and the opposite is true.

[thereonthestair]

Hi. My DS cranial ultrasounds in NICU and SCBU were also clear. To date we have not had an MRI. Inhibernation is it crucial for SDR? So far we haven't seen the point of going down the MRI route and it's not standard in my area.

We got diagnosis very early for the symptoms we had (11 months actual - 8 corrected) and at the time thought that it either meant that they were wrong, or that the CP was very bad. In fact neither is true, we got the diagnosis early becuase we are in a very big teching hospital for all our follow up.

DS also used to love lying on his back but apart from sleep he is always on his front now and actually always falt too.

For those who are interested we are about 3 months post botox and the results are remarkable. The physio says that the botox gave 100% improvement which has shrunk back to 95% now. It is still the case that DS can now lay his legs flat and choses to do so both in sitting and lying on his front. The usual expecation is apparently 75% so that's good.

We also now have a lycra body suit which is keeping the right muscle pattern in his core and really straightening him up. So I really recommend that and the full suit option rather than just the shorts. DS is also now much happier is standing so we may shortly ditch the standing frame as we don't need it so much any more. Still wish he'd stand independently for more than a few seconds (longest DS did that was nearly a year ago now) and walk independently but time will tell. Also very pissed off with NHS who are saying that now DS can use a walker he is doing his own physio. Strange that they are also strapped for resources.

[inhibernation]

Thereonthestair - for premature babies with PVL an MRI is not essential if applying to Dr Park at St Louis Childrens Hospital. Not sure about UK though. Bristol did look at ours. I can pm you the email address for the SDR administrator if you want to enquire. Excellent news re effects from Botox :)
Shame your NHS physio provision is at risk as I remember you saying it was pretty good. Ours is so infrequent it's a joke.

[sneezecakesmum]

Hi. My internet has been playing up! Wrote a post and it disappeared along with the broadband signal!

Not really getting the ABR thing personally. All i understand is it uses pressure expercises to increase the size of the chest (CP children are often a bit pigeon chested) and the function of it to normal, which in turn aids oxygenation of the blood and better supply to the muscles and so on. It makes sense as everything improves physically for the child, but its quite intensive and not for everyone. I would certainly entertain it if I had a severely affected child who could not participate actively in therapies.

re the MRI. No idea why the consultant said it is a snapshot (which implies it may show one week and not another) as it shows damage and damage generally doesnt disappear! Over the course of months and years damage may alter and look less as new connections take over but this takes years. EEGs are pretty snapshotty as the brains activity fluctuates more than its physical structure. Its like saying an appendix scar is there one day and not the next brain damage is scar tissue.

Brilliant news thereonthestair. Botox is a bit scary but the results can be so good at releasing spasticity. I asked DGSs physio a year ago about a lycra garment and she said no, wants him to build up his trunk natually. Anyway couple of months ago i bought a SPIO vest from USA and it is excellent. we can really see an improvement in his stability. Now we have to find a way to tell the physio! This vest wouldnt support anything in terms of corsetry, it is simply a double lycra layer but its designed to give proprioceptive information to the trunk. Think i am going to have to be a bit inventive as i am convinced a more supportive lycra (DMO) suit may be the way forward with him.