Support/Information sharing thread for parents of children with CP - part 3

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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

Hi all,

I hope everyone is doing ok. Sorry i havent posted for a while - not a lot has changed here apart from getting our Tomcat Trike which is brilliant.
We are starting conductive education and hopefully yoga too - as well as getting some parallel bars in the next few months.

I am after some advice regarding orthotics.
We currently have piedro boots only. Paediatrician referred us to orthopeadics to assess for botox and splints - but none of that was discussed, and just told us he would keep an eye on progress and continue with the standing practice.

I've now pushed physio for a referral to orthotics and we have an appointment tomorrow. I really would like to try splints/AFOs as i do think they will help. I am prepared to be fobbed off tomorrow again.

What questions should i be asking? What other options are there? Is casting an option - or would botox come first?

I am also going to be pushing for a referral for SDR assessment when i next see orthopeadic consultant and peadiatrician.

Thankyou all

Hi RedFox. Glad you're enjoying your Tomcat too .

Can't give much orthotics advice - we had piedro boots but physio said it was impeding DD2's walking as she could not bend her foot in them to produce a more typical gait (I agreed). So we have good shoes from an independent retailer, but get orthotic insoles from the NHS orthotics department at our local hospital. I think you're looking to go the other way to have more support though, not less.

I hope someone with AFOs etc experience comes along to give you some advice you're asking for x.

I hope you got the answers you were looking for. Come back on and let us know how it went.

hi all

does anyone know of a children's swimming pool (ie. warm/training pool) in London that's open to thew public in the mornings? It's dd birthday on Thursday and I'd really love to take her before I have to go to work in the afternoon.

Highbury pool, gonehaywire?

Redfox sorry I missed your post, I gather you've already had the appointment. I know it will vary massively between boroughs/consultants but our consultant at Royal London has recommended Botox in a few months time, then serial casting afterwards. The casting is a real pain and difficult for the child to get used to but produces good results apparently.

DS has had AFOs for almost a year now and they've definitely helped, although they have been detrimental in some ways as he can hardly walk without them at all - before he got them he could go short distances without (a few meters). But ultimately I suppose the goal is to get them independent rather than walking without support at whatever cost.

The measurements taken for AFOs can be useful in and of themselves, too, what angle his feet can bend to and degree of movement/flex, gives something else to measure against.

We are on our second pair of AFOs and DS can now stand independently, cross a distance of around 10 meters without holding on to anything or falling, can even negotiate an obstacle course like at physio yesterday. He's just 3. We've had a few months of struggling as he'd had a massive growth spurt resulting in severe tiptoe walking due to tight muscles, he's still tight in calves which is why they think he's a good candidate for Botox.

Hope some of that helps, so much of it comes down to your team's preferences/approach.

How did you get on at the appointment?

hi babs

I checked out their website and it looks like they have swimming lessons in the morning. Have you been there before in the morning? can we just walk in and swimming

Oh sorry gonehaywire, I have been before but can't honestly remember which day, I'm sure it would have been a week day. Ring them up? It's nice and warm.

Have also been to Cally Pool (Caledonia Road), they have a warm childrens pool.

Clissold Leisure Centre? Also nice.

There's also The Britannia which has a sloping beach style entrance and wave machine but it's usually on the cold side.

I don't know off hand which are open for free swim in the mornings but just ring round. Hope that helps

Thanks everyone.

The appointment at orthotics went well. They didnt really argue - and measured and cast DD for a splint for her left leg. This is the one she has most trouble with getting her heel down and it turns outwards.
We should get it on 22nd July.
They said that the splint wont help with the foot turning outwards as this is caused by further up the leg (i presume they mean the hips).

We tried her with the vtech baby walker again the other day (only because we were clearing out the shed and came across it!) She is 100% better using it then when we tried about a year ago. Before, she couldnt even stand holding it, without falling backwards.
Now she can walk with it - although she is a bit tall for it now, and its obviously not stable enough, if she loses balance or footing she easily falls backwards and the wheels dont move freely enough for her.

We are hopefully trying out a kaye walker and a rollator at physio this week. Does anyone have a rollator - pros/cons?
If she had a Kaye walker it would be the smallest size - the white one.

BabsUnited - thankyou for the info about Botox and casting. My daughters tightness seems to be mainly in her ankle/heels/feet and not quite as much in hamstring/back of knee.
Orthotist commented on the good range of movement she has in her ankles/feet - physio have mentioned this before too.
Do you know if Botox is used in ankles/heels?

Hey RedFox. We have the smallest white Kaye walker, DS likes it although it's quite wide at the wheel base. DH ended up taking off the wheels and repositioning them within the frame, rather than on the outside of it, so it's easier for DS to get it through doorways etc. It is rather medical/functional looking and DS was very unsure at first so we let him go to town on it with Peppa Pig stickers which made a big difference and now loads of children at nursery want to 'have a go' on it

Am afraid I don't know too much about where Botox can be used. I would have thought it can be used it any muscle though?

Am so angry today. DS had his MRI scan about 3 months ago to confirm CP/check out what brain damage he actually has. Yesterday we went up to London for the results.... only to be fobbed off with a junior who didn't actually have the report from the MRI. It wasn't ready apparently. DH and I both took hours off work and took DS out of nursery which we'd paid for - all for nothing. It was worse than a waste of time though as we are waiting on a confirmation of diagnosis so we can seriously talk about treatment options (botox/SDR/casting etc etc). So this has delayed everything even further. They promised to call us within a week with the results, but it will be this junior relaying what the consultant has told her/what the report says - so we might not be able to get any questions that we had answered straight away. . The next appointment available wasn't until December, until DH kicked up a fuss in the reception and they 'managed' to find one in November instead. Gee, thanks. Such a ridiculous waste of time and appointments are so spaced apart, we've not seen the same doctor twice since we've been referred there. Really not happy.

Babs.
I am sorry to hear of your experience over the MRI scan. It can be so frustrating. I know to a Doctor you are probably just another case but this is your child and your life you are talking about.

When my dd went for her MRI scan it was a disaster. We had waited months for an appointment and there are only certain hospitals which perform them. So we were sent to a hospital which is a good distance away from our home. Appointment was for 1st thing in the morning and my dd was not allowed to eat anything beforehand. The nurses were going through her history and it turns out that vital information hadn't been passed on between our hospital and this hospital. My dd has a heart condition and because of this the anaesthitist refused to put her under without further information. So they faffed about until about lunchtime and then said they wouldn't be able to perform the MRI that day. Considering we had waited months for the appointment it was a bit of a kick in the teeth. Also my dd was going mad as she had no food in her. We were the same we both arranged time of work and got my parents to look after our other dd so it was just a complete waste of every ones time. We were very frustrated.

Hope you get your results soon. Although our results were not what we were hoping for at least we have a diagnosis instead of what ifs.

BabsUnited
Thanks for your reply.

We went to physio yesterday and she had a rollator and a Kaye walker for us to try. DD has used a rear walker before, but she seemed to much prefer the rollator. I was surprised at how compact it was, it folds really small and it very weighted which is what she needs.

So sorry to hear about your MRI experience, its a shame they didnt bother to call you to let you know the report wasnt ready, extremely frustrating i bet.
Maybe write a letter to the consultant? I think it should be addressed that you re-arranged work and nursery and had a completed wasted journey.

Which hospital was it?

DD had her MRI after birth as she was so poorly - even then the results were 'brushed over' - i actually found out the proper diagnosis while reading her discharge notes. I still havent been told a CP diagnosis - but again saw it on a letter from her paediatrician.

I cant imagine what its like to not have a confirmation of diagnosis hugs.

Thanks Albaba and RedFox. Well, true to her word the consultant did call me just now and went through the report.

The MRI showed periventricular leukomalacia, which she said was related to his prematurity, bleeding around the ventricles of the brain. The 'good' news is that this is what the neurologists were hoping to see, and it explains and confirms his CP spastic diplegia diagnosis. It also confirms it's nothing progressive or degenerative. So she suggested discharging us as now the CP will just be managed by physio/OT/neuromuscular team for botox etc. But I asked for her to keep us on for now in case we have further questions - we have an appointment in November booked anyway.

It was the Royal London, RedFox. I can't believe they brushed over your DD's results?! What on earth.

BabsUnited - my daughter has PVL too, they didnt tell us this when they went through the MRI scan, i found it on the notes afterwards.
It is common for prem babies, my daughter was full-term but had issues during labour/delivery. She has spastic diplegia too - which again i think is the most common outcome for PVL.

There is a UK PVL facebook page with quite a lot of members, it might help to answer any questions you might have.

It sounds like you have done the right thing by keeping the appointment and asking not to be discharged yet - as im sure you will have some questions to ask.

Thank you RedFox got the PVL group recommendation - have just joined and it looks brilliant. Particularly the shoes-over-splints question, found several new avenues for investigation.

Babs. Hugs for you. Hope you will now get all the support and help that you need. I know how hard it is to get the cold hard facts that actually the MRI wasn't ok and yes there is a problem. My dd's said that she had white matter loss of prematurity. Totally crap I know. Keep talking. Albaba.

hi everyone.

has anyone got any ideas on what to do about increased floppiness?

The older and taller dd gets the more floppy she becomes she seems to have lost the ability to do things that she was able to at a younger age.
I've mentioned it to her pediatrician and physio but neither had anything useful to say

Hi GoneHaywire. Can't advise on floppiness, sorry, DS has the opposite problem. Frustrating that the paediatrician and physio had nothing to say though, what is the point of them if they can't advise?! What sort of things is she working on at the moment, if it's strengthening that might help maybe? No idea to be honest. Do you have anyone else you could ask? I'd be tempted to ring up a private children's physio specialising in CP and saying you're looking for a private physio to help with your DD's increased floppiness and asking them what they thought they could do to help. Doesn't mean you have to employ them of course... just say you'll have a think and get back to them. Slightly cheeky but what the hell, sometimes you have to do these things.

Yesterday we managed to dissolve our entire school into tears. It was DD2 first sports day and she 'ran' 3 fabulous races :) :) Big sis was on the same team as her, and helped her at the team games part. So, so proud of both my kids.

Awwww lovely Everyday

Does anyone have any experience of cerebral palsy and bad behaviour? We had my dd 3 at physio today. She done about 10 minutes of good work in a hours session. We started off well and then the physio produced a ball and wanted her to do exercises from sitting to standing which she flat out refused to do. I tried the softly softly approach with her, then bribery then threats ie if you don't co operate with the physio then you will go straight to the car. None of these approaches worked. The physio tried to reason with her then tried to be firm with her which didn't work either. She just started to cry and flat out refused to do anything so our session was cut short. This was the 2nd week in a row that we have had this situation. The physio basically said that if she wasn't going to do the work then there was no point in her going to physio so she suggested we take a break from going to physio. We usually go every week and she is not going to see us now for a month which is frustrating because we want to put the work in with her and get her to be the best that she can be.

Other things that we have noticed with her. She is very headstrong and once she gets something in to her head there is no reasoning with her. She has proper meltdowns over and above an average 3 year old. She goes to nursery 2 full days a week and we take her out to activities every other day but she doesn't seem to mix or interact with other children she just sticks with us or plays on her own. Also she has a toy which she is obsessed with and goes everywhere with her. I put him in to the washing machine once and she had a complete meltdown and kept pulling at the washing machine door until she got her toy back. He is the only thing that she seems to get comfort from.

Also she has started saying this thing that things or objects are her best friend. Today pancakes and strawberries were her best friend! Also she is very overly attached to her Daddy and sometimes I think she doesn't like me that much. For example the other night I went in to her room and she was awake and I brought her in to her bed. She tried to push me out and said 'I don't like you Mummy, go and sleep on the chair' I tried to brush it off but I was very hurt by it.

She has a twin too who doesn't display any of these behaviours. Don't get me wrong there are times when she can be lovely but so much of our life is now dictated to by her which is so hard. We cope with so much already with her having a physical disability, I don't think I could cope to with something like autism or behavioural issues. My dh thinks we should seek help and to see if there is anything else wrong with her. I am worried about her being labelled. I want her to go to normal school with her twin and have as normal as life as possible. It's just so hard. I thought as she got older things would get easier but I think they are actually getting harder and I don't think that that is going to change anytime soon.

HI Albaba. I am by no means an expert - so this is just my experience and opinion - but to be honest a lot of what you've said sounds like typical toddler behaviour. DS (also 3) occasionally displays virtually every behaviour you've mentioned, and neither myself, DH or my mum (who is a teacher of 20 years standing and has dealt with many many children with behavioural issues) think there's anything wrong, over and above what's normal for a toddler.

It's probably not too helpful comparing to her twin either, I don't mean that nastily, just that children are all different and to me it doesn't sound like anything linked to her CP, apart from the fact that she may be additionally frustrated (over and above normal toddler frustration stemming from the need to be independent and communication issues) and angry sometimes that she can't move in the ways she wants to or feels she has to be forced to do physio. She's also got a direct peer to compare herself against and so might well find this difficult.

Sometimes DS has moments like you describe in physio too but generally he's pretty compliant most of the time and we can usually snap him out of a mood or potential meltdown situation with a change or toy/change of subject/distracting in some other way. But still if he's not napped or he's hungry, physio stuff never really goes well. When DH takes him he can get him to do more when DS is wavering as he's more tough on him than I am. How does she relate to the physiotherapist? A good physio should be able to keep them engaged and sense when they're getting fed up and change the game quickly to avoid scenarios where they don't want to engage. Perhaps ask to see a different physio instead of just having a break? Or switch it up, can you ask for a hydro session as a breather? Or even a change of room/environment?

DS prefers me to DH, and will often say things like 'no daddy I don't want you to read me a story, go in your bedroom' when I'm there. But if it's just the two of them they have a lovely time. Again I think it's natural for a child to have some preference between parents, it's usually the mum i think but there are always exceptions.

Oh and DS's current 'friends' are his plastic chicken from the farm, a small card with a picture of bacon on it and a small blue tray with a plastic lettuce from a playmobile set.

Of course she may have slight traits of something or other but it's difficult to discern any from what you've posted. I had a quick look online for a sort of autism checklist but a lot of them are only answerable by the child who would need to be older than 3 I think (for example 'can you easily visualise characters in books?'). If you are still worried I don't think a chat with a consultant would go amiss, I really wouldn't worry about labelling too much.

Lots of hugs. I know what you mean about it being difficult enough dealing with the disability, anything else would feel just too much. Hope this helps.

Babs. Thank you for coming back to me. Not meant in any bad way but I am glad that I am not the only one that is dealing with things like this.

We have been going to physio now for about 2 1/2 years. We started before when there were some concerns about her development but we didn't have an official diagnosis. There was no way that when we first started that I thought we would still be going 2 1/2 years later. She does like her physio and talks at home about going to see X but these last few weeks she has been really difficult. The physio was insisting that she had to do these exercises on a ball and that she could do a different game afterwards. I could sense that she was getting frustrated with her as I was too.

To be honest I am grateful that she is getting physio but it is tying going every week for us as parents and yes she has made progress but it has been painfully slow. We do lots of work with her ourselves eg swimming, going to the park, playing games in the garden etc. I think if we try to make I fun then she doesn't think that she is doing work.

Thanks Albaba.

Albaba, my ds is 5 now, but everything you said resonates. He did grow out of it. IMO 3-4 is a hard time for physio, physio is hard work whether you are an adult or a child, and for a small child it's boring and hard. And young children don't understand what the benefit is. Ds had sdr earlier this year and the sdr team prefer 4-5 year olds for physio as they comply more!

Also the research tends to show having blocks of physio, and then breaks works better... As otherwise you get physio fatigue. In DS case we have now got 4 physios and different people works better to avoid the boredom.

I would separately say DS is always telling my dh he needs to go away, or go to prison ( after watching wind in the willows 2 years ago ). He prefers me, always has. Again I think it is normal and his ed psych for his statement said that is normal as he needs one clear first choice care giver given his disability. He chose me....

Hang in there it gets better.

Hi, does anyone deal with epilepsy and CP?

Our paed is useless and our neurologist is refusing to take account of the impact of the anti epilepsy drugs on tone and thus on sitting, walking,eating etc. Finding it hard to get a joined up approach to managing both conditions.

hi sootballs

my dd has athetoid cp and dystonia (which at first glance looks a bit like epilepsy). We all know that her dystonia meds affect her tone and ability to do the work during her therapy sessions (they also seem to affect her emotional state)

as I'm the person who is with her most and in the best position to observe the effects
her neuro pead has given me permission to tweek her medication dosage and also the time of day at which I give it to her in order to find the best combination that works for dd.

Since epilepsy and dystonia are not the same (even though they can look similar) I don't know if this is an option for you. I think your options also depend on which medication your dc is on

Are you able to get a second opinion from a neuro disability pead or another neurologist? can you request an mpa so that you can discuss this with all your professionals together?