Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

[Galena]

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

Dev - there are never enough hours of the day! But I find breaking up the daily exercises into sneaky little chunks easiest. Soon it's just routine and you forget how much you do. For example we do bridges and sit ups while getting dressed in the morning. Sit to stands while getting into pjs .. It's amazing how forgetful mummy is, stand up to pull down your trousers, sit down ooops forgot to pull them off, up you go again. Side stepping along the side of the bath before getting in. It's exhausting mentally but much easier than a set Physio time for us. I have a check sheet which I try and remember to fill in, means I can see what we have missed out a lot one week so can try and prioritise for the next. But it is a long slog sometimes you just need to take a week off and have fun as a family x

Dev I agree with you I found it really hard at first to get all these physio things in I often found myself thinking in physio sessions when being told do this three times a day or as many times as you can how, how am I going to fit that in as well as everything else are you insane! lol but I do it in little bits when we get dressed after bath time and I do what I can. I just tell myself as long as I try my hardest to get what I can in them I cant be too hard on myself!

as for my earlier comment about going shopping I don't generally take the boys food shopping with me unless the other half come with we are really lucky to be surrounded by family who are all willing to help even with the simplest tasks such as food shopping!

is there a generally age at which they will try to start getting DS2 to walk as I know normal rules don't apply but I just wondered if its like when they get to 3 or something?

Thanks kaffiene, I have made a check list to make sure that all his daily activities are ticked off. We are also doing ABA as he is at risk of ASD so we are going to try a lot of the activities in that as well. He can stand on his own for a few seconds, but just dives forward instead of taking any steps. According to the physio, he is not developing the balance required to walk independently because he is afraid so we are going to work on his confidence.

Choggers Our physic started him on assisted walking holding hands, holding furtinute, holding brick trolleys etc as soon as he was able to bear weight on his legs. Mind you that was a private physio, I gave up on the NHS one because he would spend about 30 mins of the 45 min session screaming and crying so don't know what they would have done. I did however managed to get a Kaye walker for him couple of months ago after much faffing on their part, so the answer is probably as early as possible.

Choggers, we had a standing frame on dd2's first birthday, to enable weight bearing.

She had her first Kaye walker some time before 2 - I have an adorable pic of her in her birthday clothes (real ones not birthday suit lol) with streamers from a party popper round her neck, walking around the living room with her Kaye. she was determined, if utterly crap on the balance front. It was nowt to do with confidence, she just couldn't balance - she desperately wanted to.

They took it away when she was three for a year, to see if it would enable her to walk independently. Nope. And then she had an r82 croc for a year or two - finally gave it up in between yr r and yr 1.

Normal rules don't apply, but you do follow the child's lead.

We got an ancient rifton gait trainer off ebay when DGS was 2 ish and he took to it like a duck to water. Replaced at 3 by a sparkly size 2 rifton gait trainer and and he hated it. Every step was an effort

Then the rep and physio left this clapped out old version Kidwalk with a velcro chest harness (he needs the rigid harness so he is a bit floppy up top!) no leg guides to stop scissoring (so we improvised with webbing straps!) and he storms away in it! He also has zero balance and coordination (well maybe a little) and the Kidwalk encourages the all important weight shifting, which helps teach balance, while the gait trainer just holds them in a non dynamic upright position. Definitely trial a few before deciding as they are stuck with the walker for ages. The Kidwalk is more expensive though, but this didnt present a problem.

Yy, really important to trial.

Dd2 got to the point that a Kaye was unsafe - she wanted to be able to move in all directions at will, and the Kaye wasn't agile enough - she would take it over backwards and sideways, and it was just dangerous. But she didn't have any standing balance, and so needed something to provide it. For her, the croc was right, but all kids have different needs.

hiya

I was wondering if anyone else has struggled when weaning! DS2 has been on smooth food for a little while and they want to progress him but finding it hard as he generally ends up with DS2 being hysterical and I end up feeling horrific don't know if im doing right for wrong! hes not always great with smooth food, hes better when hes hungry but I don't think he gets hungry that often and now iv been told hes not haven enough fluids so im pumping water through his NG tube like hes going to pop. feel like im fighting a loosen battle.

We are also having problems with weaning but we are getting some support with that. Have you spoken to your Paed about it, they can refer you on to dietician and feeding SLT who might be able to help you. We asked for a refer all and they were helpful but not very effective. You never know they might be better in your area.

Also, I posted links to one of the books I have some time ago. This is one of the books feeding SLt normally use for guidance. If you scroll down the thread, you will be able to find the links to the book which I uploaded to Dropbox.

pofaced how would you go about arranging for these trials, Are they normally done through the physic/OT or using company reps?

Physio usually invites reps in for demos and sets up appointments for all children who could potentially benefit. Same as for trikes - some invite a number of different reps in on one day to essentially have a few to try, or they carefully select likely products and do it one at a time.

The other way is of course to go to either kidz north or south, and chat to the reps on the stands, try the kit there, and then go back to your physio.

ah, I found them.www.disabledliving.co.uk/Kidz/South, thanks.

choggers I just realised that I didn't post a link in the post about eating and feeding difficulties, here it is..book link here

All our trialling goes through physio and OT too. I did phone quest up re a trike as OT was taking ages and eventually a trike day was organised but I would have kept pushing the rep if OT couldn't get it organised. . I think you just need to inform yourself and keep asking the physio to get their finger out as it can take forever. Once the Kidwalk is ordered we are looking at 6 weeks. She said it was so quick ONLY 6 weeks . To me that is forever. You have to pretty much go with the flow with big equipment as the NHS is funding it.

Hi All..Slightly off topic, but was wondering if anybody had any advice on where to get appropriate shoes and sandals for my daughter. She has recently been given a new carbon fibre insole which she has to wear alongside her original arched insole which means the shoes must have a certain amount of depth to them-hope that makes sense. And where do I start on sandals?!

On shoes, sandals etc we always go to our local independent shoe shop which stocks loads of European brands which we have forums better (Ecco, ricosta etc) as Clarks were rubbish, smaller shops were also more flexible about trying to get stuff and taking ages trying things on. On trials we found physio and ot were rubbish, but the reps will often come to our home. Tomcat certain,y did are were great. Quest 88 less flexible but still helpful. We also tried various things out at the bobath centre when we went there.

we didn't have much luck with clarks either. DS1 has carbon fibre insoles as well and we found geox quite good with them but never did find a perfect fit.

thereonthestair how did you find the bobath centre? its something I have been considering but it is very costly and I just don't know whether the benefits are worth it..

The bobath centre is very expensive. There is no getting round that. We went for an intensive block over a fortnight, and it was tiring for us (particularly with the drive) but DS had a ball. Was it groundbreaking, no. Did they do anything we would not have otherwise done, no. Did DS make progress yes, would he have made it without bobath who knows. We went because for us we do not want to be DS therapists and we cannot do all the physio and exercises we want to. We never have time, and never think. We try but we both work and that is a conscious decision on our part. Because we both work the money is less of an issue than it might be as we can afford it so long as we cut back on a holiday here or there.

Also our wonderful private physio has been ill, and the NHS gets more and more stretched for time so we get less and less on the NHS (not her fault- funding cuts, staff of leave and staff leaving not being replaced) and we felt we were going nowhere fast. We would not have gone if our private physio had been working. As the bobath do nothing our private physio can't and wasn't doing. As such personally I think it is worth it if you can't get enough provision, your child is stuck and you are looking for ideas, or you just feel you need to do something. In part I am sure I did it for myself to make sure i could look back and think I did what I could. It is not ground breaking and they don't have magic wands. They have funsing literature that implies children who were told they wwouldn't walk after an intensive session. I am sure they do, but I am also sure that this is because they were misdiagnosed and/or being mistreated or not treated. If you are getting what you need elsewhere and your child is making good steady progress then save the money for somthing else (trike/swimming/something fun) or to do it later when the wheels fall off (for example when you physio gets ill or goes on mat leave!).

Hi all, just after a bit of advice really, I'm new to this forum so here goes. My son is nearly 11 months and from about 6 months we noticed that he wasn't really using his right hand, his left was fine, but he wouldn't attempt to pick anything up with his right. He seemed to keep it fisted a lot of the time but I have seen him open and close it. Been to see paediatrician who suspects mild cerebal palsy. Up until now nothing else seems to be affected, they said difficult to tell as he's not walking yet. He sat up at 7 months, rolled over quite early and has no problem eating and drinking. He can wave, clap( in a fashion) and can say mama. Just wondering if anyone has any similar stories, to me it seems strange to get a cp diagnosis when he shows no other symptoms?

Yes I know how you feel, We feel the same about doing everything possible for him ao there are no rgrets later on.

I don't think I will bother with Bobath. We have found a clinic in London staffed with a number of paed physios who deals almost exclusively with children with CP, so we are covered in case of illnesses etc. At the moment we see them once a week, we can always increase it if we think he needs it I guess.

Hanc. Welcome. My ds has diplegia, but it does sound as is hemiplegic cp is a possibility. First don't worry. If it is cp then that isn't the end of the world, particularly if its mild, and if it hemiplegia chances are that ds will walk and function well. Second don't discount it. The only reason ds had the diagnosis was observation, to start with (also diagnosed at 11 months). Thirdly a provisional diagnosis will get you in the system with physio and ot. If you don't need it later, fine, but get what you can while you ds is young, it will make a difference. I'm sure others will be along soon with more direct experience but keep posting and asking questions.

Hiya all, another newbie to the forum here :)

I have a little boy who's 4years old and has quadreplegic cp, hes in mainstream school and is my little star! So proud of how hes doing there and touch wood our local authority have been fab so far.

I have a quick question though.... hes just been provided with his first electric wheelchair (which his 1-2-1's have kindly put L plates on, lol) and I'm now looking in wheelchair accessible vehicles as my estate car will struggle to fit it. Have any of you got one, and if so what would you recommend?

Hi Hanc yes it sounds familiar to out experience as well. As thereonthestair suggested, if they are offering physic/OT, I would take it with both hands. It is only likely to be beneficial in the long run.

livinglife2thefull Can you go and visit these events run by Motability, you can probably try out the wheelchair in some of the vehicles on the stands. Motability

Yes we had our first pt session today. Said likely mild cp but would need an MRI scan to confirm. Said there was slight possibility of erbs palsy but I had c section so think this is quite unlikely.

Neverlateforwork just wanted to ask you a about DD2s milestones, DS2 still isn't rolling over nearly 9 months not to worried as we are getting close I just wondered when DD2 rolled and sat up?

DS2 is being measured for his standing frame this month (june) quite excited to see what that can bring! not to sure where it is going to fit in the house though. don't make the equipment small. but its helpful so we will find the space for him.

:)

Hi Hanc. Hand preference was our paed's first indicator to CP although he didn't tell us at the time. This is accompanied by high tone in DD2 right arm and hand. EEG came back clear (she was having seizures) for epilepsy at 1YO, and then MRI confirmed CP at around 16months. She's just turning 2YO now. We had exactly what you're describing at around 11 months, not using right hand, arm held tightly at right angle, hand held in a tight fist and although reluctant to use, some infrequent opening of hand.

However, we had traumatic birth, oxygen deprivation so I think the Paed was probably already looking for the signs although we were blissfully unaware at that time. So this differs from your birth experience although our symptoms sound the same.

Sneezecakesmum you asked me to let you know how we get on with the Bowen Therapy. We've just had our 4th session (one per week). Fantastic. I appreciate it may not work for everyone, but we've seen significant progress, so much so that even our NHS physio commented on exponential improvement in DD and is now looking into the therapy. It's non-intrusive and gentle - I highly recommend giving it a go. I found a local practitioner through google-ing 'Bowen therapy + town'. DD2 used cutlery in her right hand to, almost independently, eat dinner tonight. So, so pleased.

Thank you, Hanging for telling me about Bowen (pg1 of this thread I think). I'm spreading the message .

Sorry, I'm not very goo at making it brief .