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.

Thank you. We're very lucky in that we have had great provision in our area (ie piedro boots, walker plus much more) but I have bought some stuff to make life more accessible/safe for DD like dream tubes for her bed. Yes, we'd like a specialist trike too, and one of those ride-in trailers for bikes like the ones at center Parcs. So I can think of routes to spend the money on her if I think about it.

DD is not in nursery yet and we were thinking of having a look around after we get back from ours hols. We're 'sunning it up' in bonny Scotland just now! If you don't mind me asking, how did you access the early years budget for nursery funding? And, do you pay normal nursery costs and this funding covers the 1:1 support? I'm a bit clueless about our next step (into education).

Thanks for your advice :)

Just a hello, I'm in a little limbo at the moment as DD's consultant has gone on a month's holiday before giving her MRI results! I'm trying not to notice things and wait, but you end up picking up every little thing like a crazy lady-

I put dd on a swing with a friend today as she's (at nearly 9 months) sitting supported and it highlighted her balance. She wobbles so much the swing then wobbled against her movement which she struggled to compensate and she was terrified. It showed just how off her balance is, even though she's strong enough to sit for periods and compensates for her wobbly movement. She's trying to grab things too but makes 5-20 attempts grabbing at/ around an object quickly before it ends up in her palm then when she holds it she flicks her wrist and stares at it. She has though stopped the wild flinging of things unintentionally so there's progress. Her arms are still a bit tight, her hands don't lift above chin height and her legs don't straighten in a sitting position. This makes it harder to balance due to the small area of contact, her heels are always at her groin, so she does pretty well sitting.

She's rolled a few time front to back this week which is great. Standing with support now involves both feet down, though still weight bearing on one side with the other foot on tiptoe and turned. She's got strength but seems to have poor coordination, even holding things in her palm never involves all her fingers closing round the item, some under some over.

I'm feeling as she grows it seems less likely that all this is on the normal range to be honest. I spoke to the consultant's secretary who found her report, but she said she couldn't share it and took my mobile number for him to call on his return. This worried be a bit, I expected to be told to wait until the appointment.

Hi childcarehell. Just hand holding till your consultant comes back. Please try not to pre-empt the consultant, just enjoy your little one over the summer. I know it's harder to do than to say :(

Sorry, I didn't mean for that to sound flippent. She sounds as though she's doing lots of things well like rolling over. All kids are different, so it's difficult to know what the typical range is really. Still hand holding. :)

Hi childcarehell our dd is 5 months old so not a lot of advice here but also a hand hold. When dd had her last mri consultant said she would call to tell me results, a week later I called her! I honestly don't think these consultants realise how important these things are.
Maybe call again and ask if another paed can tell you the results? Worth a shot:)
Also congrats to all the milestones she has made. She might be slightly delayed or wobbly but sounds like she is making great progress.
Whenever you need a chat the ladies on this thread are brill :) :)

'Ve been quite angelic waiting, nearly five weeks until I rung to find out he was starting a four week holida! -managed to put it out of my mind for six weeks but she's changed so much doubts are creeping back in. My main concern isn't the delay but how tight her arms are, they were better but don't lift up at all now. She got kind of locked in the swing as her arms pressed over the bar so she was stuck rigid.'

Hello all. Just namechanged from thereonthestair as I told a colleague my name on here (there was a reason I did that)

Everyday - phone to get the form, then they will backdate the claim from when you called them so long as you fill it in within I think 6 weeks. Then take your time and some chocolate/cake/wine as appropriate and fill it in on your worst day. Any questions please ask. If you pm me an email address I will send you my DS form if you like to give you an idea but everyone just uses the cerebra guide. DS has a child's bike seat on both DH and my bike with no adaptions, and it's fine, but we are now thinking about the school runs for next year. Anyway believe me you'll spend the money.

Childcare do you get on well with the consultants pa. If so try her/him. They can be worth their weight in gold once you know them. Also can you get an email address. We have had emails from 3 different consultants who have been on holiday this summer, so worth a try even if it is only to fix a definite call/meeting when she is back.

Also given what you say about arms/grips have you got an OT at all. If not start asking for one. If you have chase them up for an appointment. They will be able to help with what you can do to improve balance/co-ordination even at home. I am afraid I am rubbish at arms as DS is affected in his legs but they should be able to give you some idea of exercises etc you can try. If DD will try the swings they are good for balance even if she is wobbly. The other stuff sounds ok though and as if she is making progress. And even if the MRI does show damage it may not make that much difference to what you can do and certainly if you can manage it I think it is helpful if you can avoid seeing it as that sugnificant. It won't chaneg DD, it won't change how she is treated and what help she needs, it may just mean she gets it sooner (especially if you chase it up). I have never had an MRI for DS although may now do so for an SDR assessment.

Been a lurker for a while & just thought I'd post for some advice :-)... DD is 2.9 yo,.. has spastic diplegia... just recently had her first round of botox. .. we have been given a little reverse k qalker for her to practice taking steps. .. of course we have to lift her up and place her in. But she is having none of it & wont go near it. Any tips on how to get her interest ed in it? I work ft & find it hard to find the time to fit in the physoi let alone argue with her about doing it :-( am still getting used to all this and cry myself to sleep most nights worry ing she will never walk & what sort of life she will have & what if I die young who will look after her... I'm so sad all the time & this not wanting to go in the walker is only making me saddes.... any tip advice please :-)

Buffonie. We had the same for ages, it is fairly normal. In our case we found making the walker fun made a difference. So ds walker is covered in fairy lights, stickers and has a basket on the back to carry things.

I also work basically ft. Technically I work 0.8 of a full time role but I have a very full on role and 0.8 works out at about 45-50 hours rather than the old 55-60 I used to do. We fit the physio in as best we can. Some days lots, some days not so. We decided that the only way this would work for us would be not to stress, as we can only do so much without having a breakdown. I am not saying that's right but we need to do the best we can for ds and going mad in the process is not doing that (in our view).

We also found fighting ds was awful, and we didn't win. However when were could be patient, it was a different story. And we did so to start with we got ds using the walker a few steps, bedtime went out the window but he used it. Finally we also found ds would use the walker much more anywhere else so shops, swings etc were much better than homes.

Buffonie We use behavioural strategies to make sure that whenever anything new is introduced, it is done with as little fuss as possible with the least expectations. I don't know your little one but you can use her interests. Ideally for this anything that comes in parts would be brilliant. for e.g a small 2/3 piece puzzle or something like this..www.woodentoyshop.co.uk/melissa-and-doug-classic-vehicles-sound-puzzle.html

You can start off by just handing her pieces and then maybe keep her favourite one just a little distance away with the walker in the middle. Initially just get her used to the walker so she could use it to cruise to the piece and once she starts tolerating it then increase the distance and just guide her in position in the walker and support her completely when walking(This is important, lift her and walker to get to the object if you have to. This is to make the connection that using walker gets me my favourite things. Whens she starts to feel comfortable, then withdraw support and eventually increase distance to the objects.

I have used puzzles here but you can use anything she likes, light toys etc.. Hope that helps. With regards to the second one, I think we all feel the same way to some extent or another.

Hi buffoni. We had the same issue trying to get dd to use the k walker. The advice given sounds really worth a try. Again, like you, we too worry for dd future, especially as we are 'older' parents (I'm 40 next year and dh is 43). We take one day at a time, celebrate any little milestone and try to make all our time together fun - even physio and OT (I work ft too and it's hard). Welcome to the thread, there's a lovely bunch on here who have helped me loads.

Thanks muchado. Have seen the cerebra guide and think I should be fine . If I get stuck I'll give you a holler . Thanks again for the steer.

Thanks everybody for the really great advice. I will try to bling up the walker to make it more attractive. .. as you suggested Muchado... & you're right about the no point in arguing with them... if A has made up her mind about beibg too tired for physio. .. there is no winning with her.... I work about 50 hrs per week also so I hear you about "not stressing" ...

Dev8 thanks for your tips also. .. used them this evening... tempted her with a balloon. .. she took 5 steps (with us moving & guiding) to get it... but that was all she would do but it was progress :-)

Everyday thanks for your help too... I was 40 last year so I think your idea to try take each day one at a time Is ssomething I'll have to try :-)...

Thanks everyone for the warm welcome! Have read through loads of post & feel really encouraged :-)

thank you muchadado,

dd as yet has nothing, which is something I plan to ask about. At the time of her appointment I was less concerned but as time has gone by she's changed and the developmental gap is a little bigger and little habits more obvious.

The strangest thing is she seems tigthter and tighter, it's not a constant at all. I was only concerned about her left arm, then her right a little and now it seems harder to nappy change. I know some resistance is choice, but it's often when she's fully engrossed with a toy in her hands that her legs are stiff.

when she is engrossed she is probably concentrating and that may well put more strain on other muscles as she overcompensates with what she is managing to do. with DS its his legs which are affected but his thumb goes in when he is standing as he forgets to put it out. He can always do it if he tries but his body sort of tucks it in and that is just part of the muscle pattern.

Children tighten up as they grow. has she just had a growth spurt, that might explain it. If not has she been ill (again that makes a difference to DS).

Finally while you are waiting does your DD like water. If so take her swimming, swish her about, move the muscles in the bath to get a less tight movement in. Water is your friend especially for little ones.

Hi everyone. I skim read to catch up. Welcome all newbies :) Congrats to sneezecakemum's dgc :-) - not sure if I congratulated already! It's been rather hectic here as usual. Dd had horrific chicken pox and had to be hospitalised on her birthday. She got cellulitis and needed IV treatment. It was very frightening :-( Lots of marks as she was COVERED - just hope they fade. We're off to St Louis for SDR soon. Thereonastair - no we didn't try halliwick yet. The only one near us is mostly for adults and starts at 8pm.
Your ds's standing and independent step is fantastic! Dd couldn't stand when she first started walking. Standing first is far better. Re toilet training - dd was 3. So was ds (doesn't have CP). Boys are often later I hear. Sounds like ds will get there when he's ready. Re DLA. We applied. It enabled us to get a blue badge which means we can do more things as a family. All of the money goes on dd and her CP related needs (and then some - as thereonastair said!)
A big hug to everyone struggling right now - please do use this group for support x

many thanks for that. DGS2 is racing ahead with his milestones while we look on in wonderment. We can't get how EASY it is after seeing how hard it is for DGS1 to do the simplest tasks.

Wishing you the best for your journey and the operation. I'm sure you will have a wonderful outcome

Mn campaign says bringing up SN children is 3 times more expensive. second hand trike £300, chair £300, etc (privately funded) so yes, I would definitely agree with that statement!

Thank you :) Just need to get anxiolytics for the plane journey!

Agree re expense if raising a child with SEN. Private physio is massively expensive let alone the equipment.

Glad dgs2 is progressing well. How is dgs1 doing?

of not if

DGS1 is doing well considering all his problems. He started a medication called benzhexol which is for dyskinetic children more than spastic ones and everyone has seen small improvements which we are building on. There is so little for his type of CP. SDR, Botox, baclofen are no good at all so its a step forward with the med. He is 5 in September and going to a MS school where they have put in place some wonderful facilities, but its nail bitingly scary wondering how they will cope with him.

Is your DD 4 now? What age is best for SDR? Not for us but just interested. I've read a study that long term SDR remains a positive thing . We bought a special tomato jogger off a lady whose DS had SDR in St. Louis and it was amazing for him

Sounds promising re medicine :)

Re SDR - St Louis team say early SDR is best (2-4) but in the UK opinion can differ even though the NICE guidelines say from age 3 (it may have changed to 2 now).
I'm with St Louis. I can see how delaying it can increase risk of hip subluxation occurring in the meantime & contractures to muscles that will then need lengthening. dd has a 20% chance of needing percutaneous lengthening if we do SDR now but much higher if left. But even if she does still need it at least we're not looking at multiple procedures.

Hello, I've been a lurker for a while and never posted in a forum before so hear goes. Dd is 16months, no official diagnosis but it certainly will be. She has now leant to sit independently which is amazing but me and her have hit a bit Of a wall I feel. Both of us are frustrated. I feel guilty for feeling so. Need some words of wisdom please from anyone who can help.

Whenever I sit her down, she turns onto her tummy and commando crawls (can't 4 point crawl that is what we are working on with physio) also she can't get from lying to sitting (again we are working on this) and she moans and moans and moans. So I help her sit back again and then the same happens over and over.

Also when in side sitted position she is twisting to me, grabbing my top and pulling herself to her knees. I think this is good?? but am worried by letting her do it she is creating a bad habit as she does have a tendency to extend her legs. The same with the commando crawling, but how can I stop her?? Also when working on 4 point crawling she is holding her weight on her arms but then has a tendency to kick both legs out and goes flat on her face

Our physio is away for 3 weeks so can't get hold of her for advice.

Any thoughts?

Buy this book immediately

teaching motor skills etc

It is extremely good and goes from babies to older children. Tons of step by step photos that will show you exactly how to transition your DD from lying to sitting. Loads of advice and explanations in a parent friendly and non scary way....unlike the Internet!

In the crawling I would get down with her and hold her in a curled up way to prevent the launching (know what you mean there). The book explains it much better than me.

Hi, my son jack has just been diagnosed with cerebral palsy 2 weeks ago and even though we knew it was a possibility it's still devastating.
He was born exactly 1 month early via emergency c section due to being in distress, when he went to neo natal it was discovered that he had had 2 bleeds on the brain with the right side being the worse.
He's 15 months old now but he isn't sitting up on his own nor crawling. He can roll over and he'll happily roll around the living room making silly noises.
I'm struggling to get my head around the fact that no one can tell us if he will ever sit up, walk or talk. We just have to wait and see which I can't stand. He's been having physio once a week which does seem to be helping.
I'm trying to be positive but it's so hard. My best friend and my cousin both have 10 mth olds who are crawling and now trying to walk and it breaks my heart. I have no idea what to expect and he is such a cheeky chap, constantly smiling and flirting with people.

Hello. Welcome and please understand that we all know how you feel especially with regards to seeing other people's children.

I take it from your post that he had a bleed each side? Have they said what type of cp. we will all try to help if we can. Has you paed talked you through the diagnosis, even with lots if we don't know? If not go back with questions.

What support have you got in place. You have physio, anything else yet? Portage, ot, slt? If there is a chance your ds won't talk easily, try to get the help in as soon as you can. Has anyone told you about special needs play groups in you area. If not some people love them as they are less "lonely" than some other places iyswim.

Get the book sneezecake linked to. Even if you don't open it yet (our copy didn't come off the shelf for a while as I wasn't ready).