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

[thereonthestair]

Thanks galena, I may well take you up on the offer of the pm on the statement when it gets to the top of the list. Thanks also for the reference.

Amy hello... And welcome glad you've joined us here. do you get on with your NHS physio? If you do and you are getting physio weekly, ask them questions, and keep asking. In our case even the rubbish physio b is more use than the paed. You may not agree with what they say but you have to start somewhere. If you don't know what's the right one for you, and if you are needing to save then see what the NHS will get in your area. To start with the NHS were good with us when we had physio a. Also have you got any special needs play groups etc in your area or other friends with children in the area. They are a great source of info, and it was how we found our great private physio. Ask around, ask the hospitals children's wards CDC etc.

Also for us we still think ds is a bit little for sdr etc but we are now looking at it. Dh still sceptical though. I have read about abr but I am not yet convinced and frankly don't have the time. I also very much want to stay as ds mother not his therapist, and that is largely the decision we have lived with happily. Similarly ds is not really a candidate for conducive education etc. however, and possibly controversially, I really think Botox was fantastic even though I know a lot of people think it is in effect poisoning ds. However I am pro vaccine, and for me saw it as a similar process. To be frank though we went to the NHS and said this was what we wanted and why, then had an argument about casting vs physio.

Also of your dd is "sided" and has more weakness on on side than another take a look at hemihelp. Ds is dip logic with a very limited weakness in his left leg compared to his right but he's also left handed. But the local friends I've got with cp children both have hemiplegic sons and they both think hemihelp is fantastic. It may be you don't want more info but we found and still find info is all we really can work from.

[chatee]

Try to get in touch with contact a family-they are very proactive in the north east. Google Percy Hedley school and the Alan shearer centre- both somewhere around newcastle area
Shout here if you want any more help- its a great resource and I wish it was around when my dd was younger xx
Hi any mouse and welcome
Ps well done galena with the statement xx
After being in Rjah and seeing with my own eyes children pre and post sdr -again wish this had been around when my dd was younger- amazing.
Will pop back again soon, hope everyone is well xxxx

[amymouse]

Hello, I've been reading bits of this thread for a while and thought I'd actually say hello! DD is 2 years 5 months with spastic CP diagnosed last September. It affects her left arms and legs, but really only notably her legs. She can cruise pretty confidently but is not really anywhere near walking independantly as her middle bit is still too wobbly. We have weekly NHS physio and have just started an 8 week hydrotherapy group. Last year it really helped with sitting so I have fingers (and toes) crossed! She also has delayed speech and tube-feeds almost entirely but doesn't appear to be cognatively affected although I guess time will tell! It does make me sad when I see her often already being left behind my peers as she simply physically can't keep up with their boisterous games and doesn't have the language to participate. She is still very social, smiley and good-natured but I do worry....then what parent doesn't! We have gaiters and Piedro boots also for use.

Recently, I've been reading up on lots of the non-NHS therapies and am so confused. I keep re-reading and re-re-re-reading until I'm blue in the face but can't pick one that sounds like it would be "the one". Although I'm trying to save and have DLA to help financially, some of the costs do seem huge not to mention the travel aspect (based in the north east, can't drive with local family for what it is worth), so has anyone got any recommendations or even the opposite to give me any ideas? Also, do you discuss with physio/paeds first...do you need permission?! It's such a relief to find other parents, it feels very lonely sometimes. x

[bobbyblueeyes]

Thanks i am currently looking into private physio as i agree the nhs ones are not great.. Mine is very rushed and my son hates her and screams when she comes in,she is not even very friendly (much less fun) to say she specialises in children.

[Galena]

There's this?

And thereonthestair feel free to pm me for any advice/help with statementing if you need it...

[thereonthestair]

Fantastic news re the statement. I remember you posting about different schools about a year ago, as we are about a year behind you. Only just turning my head to that.

For those of you going down the sdr route can anyone point me to any medical journals or academic studies about the long term affects of sdr. All I have found so far seems to actually be equivocal. I think I am at the point where I think sdr is a good idea but dh wants to understand the medical side and is interested in the BMJ and other eminent tomes on the subject. Sorry I feel I spend my life asking questions!

[Galena]

I keep losing this thread!

Hello to all the new people! Welcome...

DD had her physio assessment for SDR on Jan 11th so nowwaiting to hear whether or not she's going to be accepted. ( inhibernation are you and I on the same FB group?!)

We've also had her final statement through - full time support at preschool AND full time support next year at school!!!!!

Still trying to toilet train though - although we're making progress with the constipation.

[Dev9aug]

Thanks madwoman

bobby I second what thereonastair said about private physio. We didn't see much difference with the NHS physio, but the private one has been amazing.

[thereonthestair]

Welcome bobby.

I am back in a positive place thanks to lovely physio c who is private. I would be lost without her but it does allow me to ignore the crappy NHS at least most of the time. It's not that i am not grateful to the NHS but I appreciate I am very very lucky in that we can afford to opt-out and supplement the NHS therapy. In my experience if you can do more yourself without relying on the NHS it is sooo much easier. The NHS just don't have the resources and in the time since DS was diagnosed I am really noticing the difference in the time on waiting lists (haven't had a proper Paed appointment for over 9 months, no proper OT ever, slt dodgy and orthotcis and lycra have a 3 month wait up from 6 weeks - now if only DS would stop growing for three months..... I resorted to getting a molten glue gun to mend one fo the splints after the NHS couldn't do so without a wait and superglue wasn't sticking for more than 24 hours) . Bobby if you can get a bit with your DLA personally I would really say go for it. The private physios can often help with incorporating more into day to day at home than the NHS can and that is my life saver.

[bobbyblueeyes]

Hi Mad. My son only get 1x physio per month nhs. We have jsut started to get DLA so looking to increase that. His core was not good but i think it's gradually improving. I got the book someone mentioned on here,hoping to do some of the things in it-looks great!

[madwomanintheattic]

Bobby, how much physio are you getting? Dd was v spastic initially but is now v low tone.

How is his core? It's not unusual for the core to be low tone, which increases the spasticity for the extremities as a result - so sometimes little ones are dx spastic, when actually you need to be working on increasing core tone and stability as well...

What does his physio think?

Dd2 was originally dx spastic quad, but she's really v loose now.

[bobbyblueeyes]

No spasms but he is just really tight and i am struggling to do nappies and stretches and consultant said it may help relax him down. I am hope they work but am fully aware its something he will have to stay on to have maybe only a little bit more flexability and feel we are just managing the spasticity,and it may not even make a bit of difference. Thats why SDR appeals so yes more info would be great should i pm my email or can you send it via pm on here? Would be great to know more and get some wheels in motion! Thanks glad to have found this thread sometimes feels a lonely world lol.

[inhibernation]

Welcome bobbyblue. Is your son having spasms?
2 is not too young to start the process of assessment for SDR. It can take 2 years from referral to surgery! Plus I think Leeds are accepting 2 yr olds, Bristol 3 ( recently changed in line with NICE guidelines). Also you can send a pack to USA (Dr Park) at no cost. PM me if you want more info.

There - your new physio sounds like our last one. She made me feel ill. VERY negative. We got rid of her. You have to pick your battles it's true but your mental health is important! Felt so much better when we made the decision to request another one.

[bobbyblueeyes]

we dont have a diagnosis but notes say bilateral spasticity which would suggest spastic dip. We are having an MRI soon. Yes he did mention he is at slightly higher risk of seizures with the drug. He said that the drug may make him sleepy at first. My thoughts are it's worth a go.. What happened to the easy choices, immunisations and the like..Yes have looked into SDR definately something id be interesetd in he is too young for the Uk one and not sure how to go about funraising for the US one!

[sneezecakesmum]

Dont know what to advise there. All our physios and OTs are lovely, especially the present physio. I could kiss her she is so bubbly and positive, but we know what you mean about negativism. DGSs paed is the pits and DD refused to go to the MDT meetings for ages! I don't know whether they will change physios for you but if you are very unhappy, this will transmit to your DS and it will be so negative its detrimental to therapy. I would ask your old PT if you can still contact her or phone the department and not give specifics, just ask the 'can I change' question.

Hello bobbyblue. Sorry only second hand info on baclofen. It decreases muscle tone with spasticity (I'm guessing spastic diplegia?) but also affects the whole body. Often CP children have weak trunks too and it worsens this problem. Unfortunately it doesnt discriminate. It also lowers the threshold for siezures, which is one of the reasons DGS (athetoid CP) wasnt given it. Hopefully the consultant would have taken this into account before prescribing, but quite minor I think? Tried it with DGS for sleeping only but it gave him night terrors. It can be very useful in some very tight children though. If your DS is SD you may want to look into SDR as many of the parents on this (soon to be put to bed) thread are

[bobbyblueeyes]

Hi evevryone. Seen consultant today my son is just over 2. Both legs are stiff right side more though. We got a perscription for baclofen. I would love to hear about any experiences.

Thanks x

[madwomanintheattic]

Mmm, ok. Too early to be making predictions, by far, so I would cut her some slack on that aspect.

You also need to get shot of the Kaye, and get a Croc. . Much more intuitive.

Dd2 wasn't standing unaided at that point, blah blah, and takes ballet and skis black runs now . (Lordy, I bore myself sometimes!)

I wouldn't keep her for 12 years, and in my opinion it's too early to be reducing physio. But if you are happy with the private physio, maybe you can afford to let it Roll for a bit?

[thereonthestair]

Thanks

In answer to the questions DS will be three (actual) in a month. He was prem though and they both sort of correct and also don't correct his age.

The walker is currently a kaye walker (tired a rollator too) DS sort of hangs off it a but but also picks the whole thing up (all 4 wheels) in order to for example turn round in snow, get over a bump in the path etc. Currently he loves it. Next week he may hate it again!

DS can prop at the table and use his hands he can also stand fine holding on with one hand, and for a short while no hands. neither us nor the nursery really think he needs the standing frame any more but we haven't had any assessment of his fine motor skills.

I think we would have this physio until DS is 16/18. I also can't believe she has been employed to work with children (neither can my sister who does children services social work) If I thought it was a year or so I may manage, and I do have the private physio.

[madwomanintheattic]

How old is he now, there?

Fwiw, I think physio does become less important if children are weight bearing and using their walker (this is a general comment, and relies on their gait, and should be taken with a pinch of salt as you can tell if they are getting a good enough stretch that way - dd2 was, but I've seen plenty of kids who definitely aren't, and are essentially using the walker with their arms lol)

If he doesn't need to use the standing frame, ie he can prop at a table and use his hands (ie he doesn't need them to hold on) then I wouldn't be putting him in a standing frame. Dd2 used one at nursery, but not school - it depends on whether he has functional ability with his hands for activities if they are all standing at tables? So a context issue...

Walkers and borderline kids are interesting, and in my experience, you never know. in dd2's case, the physio took her walker away, because she wanted her to have the impetus to walk without it. It was awful. We struggled for a year - whereas dd2 had walked the length of the promenade on holiday one year, using her walker (and had loved every minute of it) the following year she was unable to do so, and we had to put her back in the buggy. So we were without it for a year, and then got it back in time for yr r. In the space of that year, she developed sufficiently not to need it. So we gave it back.

We've also had one physio that we just didn't get on with. She was attached to the special school (dd2 had a day place in her pre school year) and I couldn't believe the woman had been employed to work with small children. She was rude, dismissive, and we just did not get on at all. However, I knew we would only be involved with her for a year, so I sucked it up.

Lastly, I think you do get less physio as time passes. By school, we would get only a block or two a year (dd2 had twice weekly physio at home initially). But I made her climb stairs. our lovely physio thought I was crackers, but three times a day I made her crawl up them.

Will she continue to be the physio once ds starts school? If it is a time limited relationship, I wouldn't bother to rock the boat. If you are stuck with her, change. As I say, the only reason I let it go was because I knew it would be a year, max. She was awful.

[thereonthestair]

Hello everyone. having been in a positive place for a few weeks I am now needing some advice/guidance from you lovely knowledgeable lot. Sorry in advance as this will be long.

I used to have a lovely physio on the NHS (A). She was great, experienced, positive but realistic and got both me and DS. We used to have roughly weekly phsyio in blocks of 6-8 weeks then a few weeks off. She had time and patience and bothered to listen to what DH and I said.

Unfortunately she has left, and we got transferred to another physio. I had some history with this other Physio (B), as I had quite the worst experience in this whole journey with her in the initial meeting giving DS the CP diagnosis. The paed was bad but she was awful. She basically said, yes its cp, sorry about that bye and walked out of the room. She seemed to do most of the diagnosis/observation but was the least interested in either DS or DH or I. At the time DS was 8 motnhs corrected and she plain did not bother to engage with him. She also didn't really listen to what DH and I had to say. I almost complained at the time but decided life was too short, as she was only in the clinics and not in the therapy but fantastic physio A knew I had a problem with this meeting and B's attitude to me and DS in particular.

Anyway when I knew we were being transferred to B I thought I would try it (slightly against my better judgment) and that maybe she was different as a therapist. I thought that it was 18 months previously and maybe she had had a bad day. I also thought maybe she will be better with DS now he is a bit older.

BUT I have tried for 4 months. In that four months we have had botox (great), but the physio has been less than before throught the NHS. I have had 7 sessions in those 4 months but 6 of those were specifically because of the botox. Again that may be fine. The nursery has also had less and tell me they feel abandoned. Anyway amongst the recent pearls of wisdom

1.I have been told that clinically DS doesn't need physio as much now, as he will do his own therapy by using his walker.

2.That there is no point in doing the stretches more than a couple of times a day as they are passive

1. But despite the fact that neither us nor the nursery use it much any more he should still use the standing frame to get a good stretch in his hamstrings (private physio C completely disagrees)
   

1. And that there is no point in having a walker upstairs in our house as he will never be able to get up and down independently (He already can in a mixture of walk/crawl/climb and has been doing for 6 months when i told Physio B that she double took and then said that was fantastic).
   

1. And that DS would always be reliant on the walker (not agreed with by private physio C) and we should expect that. Not what she said a few months previously
   

1. And that he can't go to the school we will want as it has too many stairs.
   

1. That DS will stand when they get the splints right.
   

Now she may be right about all of this. But given I know I had told her about 4 before, (and it should be in DS notes) and, my overall impression that she is always rushed and doesn't observe DS, and the disagreements between us/the nursery/physio c and her physio B I am no longer sure I trust her judgement. I also believe she is overworked and know from other comments she has made that she might provide more physio if she had more time.

As it is my strong instinct is that she is reliant on one (privately funded) report we gave her which was a snapshot at a particualr point in time, rather than the judgement of the previous physio A and C and her own observation and has in effect put DS in a box and decide where he will end up and that as a result of that she is no longer pushing for a better outcome.

Everything seems contradictory and confused. If he is worse than they intially thought surely we should get more phyio and the nursery more support. Also if he is not going to be independently mobile without a walker (which physio C is adamant is wrong) why haven't we had a referral for wheelchair services.

Physio B always ends up making me doubt myself, I find her negative, depressing, and dismissive. She may have limited time but that is not our problem. I keep wondering about asking for a change but not sure who to ask (I still have physion A's contact details). I also don't want to piss her off if we can't have a change but I fear that this relationship is not working and is putting a lot of strain on me and DH and our relationship as she sends us both into a downward spiral everytime we talk to her (physio a and c never do). However the NHS is stretched and I don't know what other choices there are.

[sneezecakesmum]

Do not know THAT much about MRIs. But neighbours little boy had more damage post birth as DGS (hypoxic birth) Quite extensive and his MRI a couple of years later showed very little damage as the plasticity thing kicked in. He is not noticeably CP now. slight balance issues and hearing aid worn. The brain is very strange. Brain (nerve cells) never, apparently, regenerate though new research is going on all the time. But new pathways form which take over the damaged areas, so the old scarring is always there. Weird. Wish we were like worms and just grew new heads

ABR is I think like scotson, or its the same? Think its the chest thing. ABM is anat baniel method and totally different!

I have a huge book (cost £75 and is a waste of time and money, full of loads of different reflexes. There is a head down parachute type reflex and probably madwomans DDs one! Well done her with the skiing!

[madwomanintheattic]

Re arching. Yuh. We found that positioning made the most difference - anything tilted back and unsupported sufficiently increased the tendency to arch (and it seemed almost akin to a Moro - not something that she had any control over). She had retained ATNR too, but I think had outgrown it around five or so - it doesn't seem to be an issue now except for swimming...

She still has a fairly weird RR which seems to be 'head down when your arms are moving functionally in rotation' gawd knows what that's called. Anyway, it makes self propelling a wheelchair downright dangerous, and it also makes swimming and breathing impossible.

But, my little bean did four black runs on the ski hill today. Her instructor wants to discuss moving her on to the next level as she seems to have improved so much this season. maybe she will end up in the Paralympics, lol.

[madwomanintheattic]

Hello! Lost you for a bit!

Sorry Dev, didn't see your Christmas Day post. Yeah, we've moved loads. I start as early as possible and find a gp surgery that looks reasonably local to next locale, call them and ask receptionist for details of cloacal paed with neuro specialisation, children's development sentre, local services etc. and then spend about three months making telephone calls, getting current consultant to write to new one (I track them down using the gp receptionist info and chat up their secretary for address and post noms etc). Current consultants usually pretty good at writing to new cons and giving general info and requesting we be seen and referrals done. Sometimes we have even had new consultant appointment and OT, physio , slt referrals done even before we have moved.

Ditto with nurseries - I call the local lea, ask for the early years inclusion team, and chat up the new area inco. Ask for nurseries details, start calling nurseries and visiting if possible (we did the same with schools - unless moving from overseas I would take a few days and travel to new area having set up meetings and being shown round etc)

Really my aim is always to have everything set up prior to move - that way you can be talking it through with the kids, getting them prepared etc - and mine have always had difficulties with routine and transitions, so essential, really.

Mmmmmm, MRI. If they are done too early (I think the magic cut off is 12 days post birth) then they might not be much use... I can't remember why - something to do with brain changes post birth or some such... Anyway, after that point they are fairly useful. Dd2's brain injury is obviously static - she's had cp for 9 years and it ain't going away, but dh's obviously changed a bit over time as it was due to an injury - I suspect that bleeds are a bit like this - ie if a newborn has an intracranial bleed due to prematurity or whatever, then it will change over time and what you will be left with after the healing process is the residual scarring, which won't change. What this means to a child is obviously different in every case. Brain plasticity can repair a lot of the functional ability, but there will always (I assume) be scarring.

I have no idea what dh's brain looks like now. His brain injury was before dd2's, but I assume that his has mostly repaired... This is guesswork though!! But interesting to ponder, and hopefully sneeze will tell me if I'm completely wrong!!

Is ABM just like Scotson then?

[inhibernation]

Jobskin seem pretty good :)

[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.