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

Hi all, I've been watching this thread with interest and have some questions of my own. My ds was dx with spastic diplegia about 4 months ago. He is now 2. He started walking at 18mnths adjusted ( he was 10 weeks prem). I have only just got his appointment to see a consultant but he has been having physio since the dx. His cp is very mild and is only in one leg. As I said he walks and there seems no other problems-so far. I think the consultant will want to do an MRI and I suppose we can go from there.

What I don't know is - should I be looking at dla and a statement or is my ds cp too mild for these?

Sometimes feel a bit lost with it all and feel I have no one to ask these questions to so any help would be appreciated.

The only thing I know is that if the child needs more help to function than a child of the same age you can apply. Check out the cerebra site guide it has lots of helpful ideas. Help with feeding, walking etc.

Hi Jane. My dd has very mild CP (elements of athetoid CP and a weak trunk area) and we get dla at lower rate mobility because of us needing to keep a closer eye on her outside and on the stairs and she gets more tired than children the same age.

We don't have a statement but she does have an IEP in school which works well as they can bring in other agencies e.g. OT when needed. However, she only gets extra help with PE and a more watchful eye in the playground!

Thanks again everyone, so the thing to get would be a standing frame then. I will try and start pestering them for it.

Another thing, when we had a joint appointment with the physio and OT, the OT referred us to the children's disability team and we had an initial assessment done by a social worker. She then referred us for a core assessment. Apparently the children's disability team are the one who issue any equipment. Is that normal?

thereonthestair would you mind sharing details of your physio/OT please?

Dev will pm you (sorry not to have replied earlier).

we have never had input from the disability team, core team or any social workers. we have had some paeds (mainly useless) an excellent nhs physio who did most of the work and referrals (sadly now retired) and an new physio (after a rocky start I am leaving the jury out for the moment). we have an OT who is lovely but had no actual OT input at home, she does stuff about rails and ramps in nursery. There is some input from the early years team of the council (about money for nursery - just been denied any for building adaptations) but not got a clue who joins it together.

Dev, if he always wants to stand and has started to take a few steps, then you don't need or want a standing frame - he will find it way too restrictive and frustrating, and it really won't be worth the effort. And if he's alreading this stuff at 13mos, then you are better off letting his development continue space with physio etc - he may not even need a walking frame (I would suggest review at around 16mos and see how his balance is developing. In the meantime stick with weighted but age appropriate 'learning to walk' toys, like those brick trolleys (but put a sandbag in instead and support his pelvis when he's pushing it)) if you try and give him too much support, when his development isn't too delayed, he can become a bit too reliant on it, and you actually run the risk of delaying his development further - we removed dd2's walking frame at 3 for a year, to see if she would learn to walk independently, but she got it back again at 4!!! Just continue to encourage his weight bearing using Ppropriate means - we had a ledged play table which allowed dd2 to get a good grip of the edge to hold on, for example. It's about making it easier, but still making them work for it - if you put ds in a standing frame, you are going to remove his ability to work his own muscles.

Dd2 needed a standing frame for her hip sockets - for her it was definitely the weight bearing - her baseline hip x rays showed very shallow sockets, so it was a priority to encourage them to develop through weight bearing, to give her less chance of dislocation in the future (at that point she wasn't expected to walk, so it was more of a surgery prevention thing)

We've had no dealings with children's disability team ever. With two parents and no substance abuse in the family, she was deemed not a high enough priority. (Apparently disability has nothing to do with it, who knew...)

thereonthestairs we haven't had much luck with the NHS physio's. It was a nightmare so much so that I don't bother anymore. We have been lucky with the paed so far.

madwoman you are probably right, he does like to move around quite a lot so maybe we will let him free. what is your opinion on gaiters for stretches. I have ordered a pair to see if they help as his knees are getting a little locked.

he does not like being on his front at all, we have been forcing him to spend time on practising crawling. Should we continue or is it better to spend that time practising sitting and walking?

Gaiters will probably make the knees lock more, as they hold the legs completely straight and don't allow any knee movement? They are usually used in long sitting, where ham strings and calf muscles are too tight and prevent kids sitting with legs out straight (if kids w sit etc, the muscles shorten further, so they prevent the knees bending and hence w sitting) so that kids have to keep them straight? Kids usually find them v hard work and try to rip them off. which is fine if they have pants fine motor, as they can't grip the Velcro

Where is the spasticity with ds? If it is just lower leg and ankle, you might be better off just with the Piedros you have and encouraging lots more weight bearing (with flat feet, obv), as well as the ankle/ calf/ achilles stretching you do routinely on nappy change etc. Once kids are independently mobile, gaiters aren't so much use, as they get a good (enough) stretch through standing and then walking. (Obviously it depends how much they are doing, but for us, the gaiters would only be used for long sitting physio twice a day anyway, so a max of 20/30 minutes at a time? No idea if this is typical - it seemed to be for the other kids that dd2 hung out with at sn groups etc.

They aren't used for moving at all.

Did the physio suggest, but then refuse to fund? That's pretty dodgy.

Dev, I put dd into the standing frame for doing stuff like play-doh, drawing, playing with my button collection (which she absolutely loved and was never allowed to play with at any other time) etc. All these activities were very benefitial for her fine motor development and had to be done anyway, so we killed two birds with one stone there. Some days she was happy to be in the frame for a good hour, other days she had enough after 20 min. I never kept her in it against her will but made good use of the time she was happy in it.
Gaiters again are quite restrictive for movement, but I put them on dd for watching telly where she wouldn't move around much anyway. She could only watch tv with the gaiters on, so she didn't mind them (at least for quite a long while)and after ten minutes or so I'd take them off again. When she became so mobile that she was constantly moving even while the telly was on and was climbing on furniture (which for us was wonderful to see ), dancing around etc., I stopped putting them on her as the benefit of her being so active outweighed the benefit of the gaiters.
So, I think it's just a question of getting the balance right between using equipment and giving your dc the room and time to do their own therapy, iykwim.

ooops, didn't think much about the locked knees.We had the gaiters for stretching out thigh and calf muscles and I believe for opening up her hips as well.

Just need your opiions really, i hope you dont mind me coming on your thread?Just looking for advice from your experiences....

My dd was born 13 weeks prem, needed resucitating 3 weeks into life. I have from very early on, knew there was something not right with my baby, but repeatedly told to stop obsessing, and worrying. Now at 8 months corrected, she still does not roll, or sit. She has good head ontol according o the consultant although I notice that occassionally it will drop forward momentarily. She does grab and transfer objects from one hand to the other and puts everything to her mouth, but her arm movements are very awkward. Apparantly she has slightly high tone in her legs too though is not stiff very much at all and she does occassionally arch. I can't work out if this arching is as a result of silent reflux because it seems to happen after feeding regularly or her telling me she doesn't want to be held as I am holding her or a CP thing?
What were the early signs for your little ones??bias my little girl got quad CP?? And how soon did you receive a diagnosis?
I hope I have not waffled too mch, I am at such a loss and feel so lonely and scared for her future, it hurts so much seeing younger babies do things with such ease. I am turning into a mad woman constantly googling, just looking for any words of wisdom really from people who understand..... X x

verybusymummy I could have written your post word for word a few months ago. We were told exactly the same things by the consultant at our review appointments. Ds2 was also born at 27weeks and we has the same concerns. We were already seeing Physio at 6 months for the same reasons you listed. He was dx with CP in August at 8 months age.

One benefit of an early dx was that we started intensive Physio straight away and he is now at 1y1m sitting on his own for a few minutes and has started to take a few steps with support so making good progress.

Is your dd on any medications for reflux?
Have you been offered any help with Physio, ultimately you end up doing it on your own anyway, there was a book recommend to me a few months ago on this thread which has been really useful. Am on my phone so cannot link right now.

Your dd sounds very similar to my ds, ask away anything which we might be able to help.

verybusy I could also have written your post. The arm movements and outting things into her mouth are both good signs, but we were also told that DS had hight one in his legs at about 6-8 months corrected got a diagnosis of mild to moderate CP (spastic diplegia) at 11 months corrected. DS does have a slight weakness in his right arm but we have stuck with diplegia as his arm movements are functional. He sat at 10/11 months but the arching was very prevalent at that stage (his nursery key worker got the worst of it) and we also wondered if it was reflux. Now i think it was probably both reflux and a cp thing.

In all honesty I have had a lot of difficulty in getting my head round the whole CP thing, and I am not there yet. BUT it is in the main alright. DS is more severely affected than we thought this time last year in that he can't walk yet at 2 and a half, but he will get there. I second the intesive phsyio, also things liek swings, swimming, slides are all good whetehr there is cp or not. Soemtimes there are premmie things which cause delays which are not cp. In our case the reasons to finally give the diagnosis were tightness in the legs (mainly hamstrings) the fact DS loved to kick, his prematurity and the delayed motor development. Without the full set we would not have got the diagnosis when we did. We still haven't had an MRI as we see no point in one.

Dev DS was walking/cruising at 15-16 months ish so we didn't use a standing frame then. It's only now we do but even then it's mainly in nursery so he can play with the others, or at home when we are baking etc so his hands can run free. His fine motor has caught up as a result but he had to want to do it. We also sometimes put him in it undone when he watches TV (If I have to see any more something special I will scream) as then he engages his stomach muscles more whilst weight bearing. I always swore I woudl limit TV but sometimes life is just too short. We did persevere with crawling and it is very beneficial as DS got the recpricol pattern. It's a pain now though as he can crawl very fast if he wants to so sees little point in walking. I am trying to unteach him crawling. However it is very useful for core strength, and fine motor that he can do so, and I am told it will help with handwriting etc due to getting the neural pathways to the hands working well.

Thank you both for your replies.
I have just got back from a baby group to try to keep things normal and just feel like I will burst into tears at any moment! I hate this situation we are in. And hate myself for saying it, but I just want my baby to be normal.

The hardest thing I am finding its still being stuck in almost newborn stage!
I am so fearful and just cannot ever see the day coming when she will roll or sit?? Let alone cruise and walk? Did you ever feel like this?? Yet, i need to keep faith that the day will come because I see from both your posts that both your little ones have made brilliant progress.

We have been really let down by the NHS, it's only since going to my GP and being diagnosed with depression that a physio assessment has been set up for his week after being 'forgotten' from her neuro develoment check back in august. We also have our neuro development check up which has been bought forward to the week before Christmas - which I am not looking forward to as that could be a nice Christmas present!

Thereonthe - do you mean that arm movements and putting things to mouth at good signs or good signs that she has CP?
Were your ds legs always stiff?
Do you know why cp babies arch and does it ease off?

Dev - no she is not on reflux meds, it's just an observation I've made recently, the aching coincides with feeding. So was wndering if it ould be felix...I will mention it at next lead appointment....
What age did your ds roll??

Hang in there. It really does get easier. I just want my DS to be normal, and I will always wish for a magic wand to make the difficulties go away. But they won't and so I have to get on with it. It is also much easier now I can reason with DS and he definitely understands that physio is not negotaibel, antibiotics are not negotiabel etc. He is gettign very into telling me "later" though.

Looking back I think we were stuck in the newborn stage for 12 -18 months (from birth) So it started to get better at 9 ish motnhs - with sitting etc, and much better at 15 months corrected when DS was getting very good at crawling. With the benefit of hindsight I recall talking to a premmie mum friend about when ds would smile which he did, then bable which he did, then sit, then crawl etc... I am still there with walking but I do struggle to remember the times when it all seemed so impossible. Now it really is just walking. I do still worry about the rest of it, food, table manners, breathing (we had a really bad asthma phase at the same time as the worst of the CP diagnosis) but my DS is really happy and cheeky and that does make it easier. I remember the stage you were at though and it seemed interminable.

The NHS are generally fantastic and absoulte rubbish. The system stinks and unfortunately you have to roll with it. I was told DS had cp and then literally told don't google it we'll send you an appointment, bye. And i was told that by my current physio who I swore I would never let near DS again. But she's the only physio the NHS have in my area so i am putting up with it and going private as well. Try not to worry about the neuro check. If there is an issue the earlier its caught the better. But take someone with you, and make sure you have a list of the questions you want answered and don't leave until there answered. If there isn't an issue then it will be a good present.

Arm movements are good signs. It means she probably has functional movement in his arms. I am not a medic but that is normal childhhod stuff - putting things in his mouth. may not be perfect - I really can't judge, but in our case DS has fully functional arm movement even if he is very left handed, hence he has CP but diplegia not quadriplegia. So its his stomach down that are weak. But all children are different.

In DS case he always kicked a lot. He doesn't have conventionally stiff legs but they can stiffen, so if he is tired, ill etc it's more difficult with clothing etc. but his cp is higher in his legs than many his calves are fine. The physios also say it is stiff but they can always get a full range of movement and so far at least it is not getting worse as he grows.

He also was more prone to lying in a fetal position than flat if you see what I mean, at least from about 9 months and that was because of the last bit of extension was hard for him so he didn't do it. Also he rolled at 6 weeks corrected. I was told that was a red herring, but he was always good at rolling. He did however always tend to roll one way.

Have you got a bumbo or chair you can make dd sit in, what about her high chair. get her used to seeing the world from a different angle. Can you carry her over your arm so that she is lying on her front and engaging her tummy that way? There were so many tricks we tried and some worked, some didn't. That bit is trial and error.

DS will only roll back to lying position when he is on his tummy as he really does not like that position. He can crawl(not properly) in a circle going round and orund towards his left, but can move towards his right at a stretch. very limited forward movement when crawling, but happy to try and take steps forward with support and sitting unaided since one year old but he is making very good progress.

Speak to GP about the reflux meds and there are a number of options then as well. ds2 used to scream the house down when he first came back home and it took us a month to find out that not only did he sufer from reflux, he also had a milk protein allergy which he has grown out of. so we started him on meds, and only the strong stuff worked, oemprozale, gaviscon, ranitidine didn;t really do the trick. since then feeding and the crying has massively improved.

NHS can be a bit hit and miss, I am really pissed off with them as we were really screwed by the paed during ds1 early years. They have been fantastic with ds2 (still nowhere near what we are doing privately, but lots better) but if we had the right paed, things with ds1 would have been so much better as well. I really cannot stand seeing those guys any more so I don't bother with NHS as far as I can help it. so not only is it a postcode lottery in terms of support, but you could even get vastly different service under different paed's, in the same hospital so don't be afraid to chellenge them and change them if necessary.

very busy - the fact that dd is moving her arms functionally and can get them to her mouth is a great sign at 8mos, definitely not a sign of cp. (that isn't to say that she doesn't have any issues or whatever - too early to tell, but her arm movement sounds great).

For example, dd2's arms were locked into 'boxer' pose tucked under chin, thumbs in palm, from spasticity very early. We had terrible trouble 'unbending' her enough to get her dressed. If we laid her down, she would later 'bang out' to crucifix position, and we couldn't move her arms from there. She was unable to get her hands to her mouth at all, or grip anything unless we praised her fingers open (nigh on impossible) and wedged things into her palm. These days? She's 9yo and can use a knife and fork.

It's so hard when they are tiny, but being able to get her hands to her mouth is a really good thing. Babies need to put stuff to their mouths to learn about the world, as well as part of normal oromotor development (leading to developments in feeding/ speech etc). Kids with cp who can't do this for themselves (and it's v common) have to have a lot of help - parents holding things to their mouth in an attempt to encourage mouthing, chewing, sucking etc. so this is not something you need to worry about.

When you say there is something unusual about her arm movements, what do you mean? A good physio will pick up even subtle stuff with movement.

At 8mos, dd2 had only been smiling for 6 weeks. she was completely a newborn. She's doing v well now though, so for her it really was just a matter of time. It's very hard. When she was still in scbu, I used to say to the mum of a dd born on the same day, that if we could just have a crystal ball and see them on their fifth birthday, that I would be okay, because I would 'know' where they were going... I have to say that on her fifth birthday, I still had lots of unanswered questions, so the cp game really isn't a short term scenario, you just get better at dealing with it. Now I want to know if she's going to be able to drive, cope at university, find an employer who sees past the cp, find someone who loves her, have children.

You might not get a definitive dx for some years, but even if you do, there are no guarantees on what it means. Dd2 was dx spastic quad, and we were told she would be unlikely to walk or talk. I couldn't feed her, she screamed all the time she was awake, and I essentially spent the first two years (before she was even dx) teetering on the edge between coping and sobbing. Presentation can also change over time. Dd2's dx was changed at 4yo, we requested another MRI as her tone was completely different to original dx.

That said, at 9, she walks, talks, runs, sings (badly), has always gone to ms school, goes to ballet, swimming and brownies, is learning to ski, wants to be in the Paralympics, and is currently writing a book about having cp. (she had taught herself to read before she could talk... But obviously we didn't know that!)

Right now, none of your questions are going to have quick answers. You need to be kind to yourself, and buckle in for the long haul. So it's about getting coping strategies in place for you. (Ultimately I ended up in counselling when dd2 was 6 or 7) making sure you have somewhere to offload, and a dp or friend or nursery or childminder that can take dd for an hour or two here and there so that you can try and relax. Get out of the house, if you can't bear a regular mums and babies group because the differences are too stark, find an sn group. From the sounds of it thou, you should be okay at a regular group, and you may find it interesting. I used to go to both. The more I was out of the house, the better for my sanity. It was hard to fit it in between appointments, but I knew it was the only way to stay sane.

the first two years are a bit grim. Did they prescribe you anti-ds?

If you are curious about reflux, why not pop to the gp and discuss a trial of infant gaviscon?

Hi verybusy,I feel like I have a lot less wisdom to offer than the other three lovely ladies. For what it's worth, we realized things weren't going right with dd1 (born 11 wweks early) when she failed to start sitting and crawling. (I had also noticed that she never played with her feet and never put her toes in her mouth. But the consultant and paed said this doesn't mean anything and she might do it later on in her development. Now we know why she wasn't doing it - because she couldn't.)
She did start crawling commando style at about ten months adjusted. At that stage we were already on the waiting list for physio because she couldn't sit. At just under 12 months adjusted her consultant finally found her to have high muscle tone in her legs (apparently normal at every previous appointment). Her physio started within a couple of weeks and within the first few weeks of that starting, she learned to sit. She had started to crawl properly a few days before physion started.
She first managed to get up onto her feet unaided at 1 year 7 months adjusted took her first steps a few days after that.
She had physio every one to two weeks for a year, less frequently since then. We see our OT once every two or three months as well, though her fine motor skills have picked up loads and it is hardly noticable now that she has more difficulty than her peers in that department.
She has made amazing progress since her diagnosis. She is now 3 years 10 months adjusted. She can't skip, stand on one leg or jump into the water at her swimming lesson like the other kids. But she can walk, kind of run, dance, step up and down a curb (only when she doesn't wear her splints though), go up and down a flight of stairs without holding on, use the toilet all by herself using an Ikea step and a support frame we were given by our OT. She can go on her little bike, with stabilizers on, and even though she won't do a circular movement with her feet but only pushes her left foot down, then up backwards and down again forwards, she can actually make the bike move like that so that we don't have to push her any more (until she gets lazy that is). She was given a micro scooter for her last birthday and has amazed everyone (incl. our physio and ot) how brilliant she is on it!
Anyway, I hope I don't come accross as boasting. I'm aware that my dd's spastic diplegia is milder than the cp of a lot of other children, I just want you to know that intervention can achieve huge progress.
I know how daunting it all seems at the beginning, and how upsetting it is (see my posts upthread if you like). Try to focus on what your child CAN do, rather than on what she can't. It is amazing that she survived the early birth to start with, and it is brilliant that she is using her arms and hands. Once she'll start physio you'll feel better because you will be given tools to help her and work on her progress. That's much more empowering than not knowing what's going on.
I hope this helps you in some way. It will get better and there's no reason why you shouldn't be hopeful at this point that your dd will reach milestones like cruising, walking etc.

jokat thanks, but I should point out that I am not a lady.

I'm so sorry Dev

Mad woman & Jokat, more replies, thank you!

everyone's replies have helped lift me and given me hope for my baby, it is just the waiting that I am going to have to try to accept and deal with.

We have NHS physio assessment tomorrow so will see what they say, any advice on what to ask other than list all my concerns??
and have made contact with a private one too - it sounds like the more I can do the better....

Mad woman - I would describe my dd arms as awkward, and hands too. in the sense that her movements are not fluid, they seem robotic. They have a better range of motion, when she is lying on her back, as apposed to sittting upright in her cushi tush chair (simila o a bumbo).
Although her hands do open, and more so recently stay open and relax more, she definately has a real tendency to fist them, particularly when feeding and sometimes her fingers are stiff and not easy to move. I am obsessed with looking and touching babies hands, only babies I know!! ( see I told you I am going mad!!) and they definately feel looser and more natural if that makes sense......

Also, she can't clap ( I don't mean by herself as I am not expecting that for a while) but I can't get her hands flat to clap, she will always clap with fists. Are there exercises to assist with this??

I am lucky in the sense that dd is small, so can easily pass as a 4/5month old so at the moment going to groups is only an issue with myself I terms of what she can't do and other babies can. So if asked, I often lie to people about her age, so I don't have to go into the ins and outs of everything.

Have just started antidepressants and waiting for some counselling to come through too!

Hi, just a quick message to very(as don't really have time to answer in fully but will come back later tonight)
Massage - try and see if you can go along to a baby massage class and then do some massage as physio three or four times a day.
In regard to nhs physio -ask to see policies and query everything......to cut a long story we were recently told (after dd has had major surgery) that nhs physio would still only see her once every six weeks, I phoned GP s and asked to query this and did they think it was sufficient?
Physio has been out today and will visit dd weekly, a session at the hydro pool at hospital and a session in the hospital gym and when dd is back at school will train up a lsa to do physio stretches n strength exercises instead of pe
SHOUT LOUD

I would go and get your physio assessment done and physio in place (dd2 had physio and slt from birth - she was discharged from scbu with both in place) and early intervention is absolutely key.

Nowt wrong with being obsessed with babies hands. We had to do pretty much constant physio for dd2 to get her to open her hands up. Just gently unbending, but also lots of tapping, touching and gentle rubbing on the backs of her hands to try to stimulate her to open them up.

If it helps, time is also an interesting factor - dd2's hands now (from being fisted, thumb in palm, tucked under her chin) are actually really low tone and hyper mobile - way looser than 'normal' kids.... presentation and muscle tone can change so much over time.

And don't ever lie. Disability (or potential disability) is nothing to be ashamed of of. The more you get into the habit of lying about it now, the harder it will be in the future. The more open you are with people now, the easier they will find it to include you and dd. Dd doesn't need to be hidden away, and the other mums and babies need to grow up knowing that difference is a completely normal aspect of society, and nothing that requires hiding. I'm not advocating spilling dd's medical records all over the coffee table, but a simple 'yes, we think she might have some problems with muscle tone, she is quite small isn't she' is a perfectly normal conversation piece, then move on to the usual stuff.

I always bring it up first, when the circumstance arises. That prevents other people wondering, and getting embarrassed, and not wanting to ask, and then treating dd2 and I like social lepers because of the unmentionable d word.

(I do understand that you might not want to say anything because you'll burst into tears... Have been there too. )

Disability is a funny old game. It's such a taboo, but when you think about it realistically, it could be that any of the other mums will be in your situation next, or have an older sibling with Downs syndrome, or anything really. And you would want to know, the awareness doesn't mean you are needing pity, or support (although believe me, I was occasionally grateful for someone taking the screaming bundle of joy away so that I could get a hot cup of coffee through my tears) but it's just because it makes you a real part of the group, not a secretive or 'pretend' one... Obviously if these are folks you don't particularly care for, you might not be too bothered, lol. But do try to carve out as many of these escape routes as you can, for your own sake, just in case you need them. A support network, even if it just consists of chocolate biscuits and someone else making the tea for half an hour, is a godsend xxxxxx

Glad that you have counselling in the pipeline. Hope the physio appointment goes well (in a kind of bitter sweet way, and that you get good intervention in place). Tomorrow isn't going to bring any answers about the future, but hopefully it will help put some order into your present. She sounds as though she is doing very well, though. Functional arm stuff is truly grand, however awkward at this point, honestly. xxxx

Hi - I am brand new to this site, dont even know if I am posting correctly, but was so so so pleased to find this thread. I am mummy to a 22 month old with spastic diplegia. I have only read a few posts so am sure I will now be up half the night reading the rest. There has been so little info so far for us, and we have had to find out everything we needed to know on our own. its been a little lonely, so this is why I am pleased to have found this. Will post tomorrow and introduce properly xx