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

(950 Posts)
Galena Tue 29-Jan-13 08:58:56

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.

everydayaschoolday Mon 10-Jun-13 19:37:01

On phone so keeping it short. Was thinking of you today, thereonthestair. Was at work so couldn't message back. Hope all went well this afternoon, and your DS is feeling alright. Big hugs your way. And no it's not quite the same as I didn't worry about dd1 the same way as I worry after dd2. You're right xx take care xx

sneezecakesmum Mon 10-Jun-13 19:59:43

Inhibernation....your colleague may have felt they were being reassuring, but frankly they were talking out of their arse!

I had two NT children and despite DS having ADHD which was hard work but manageable and now helping DD with DGS who has CP and being very involved in his therapy and care, it is definitely NOT the same! Managing children with the odd broken bone (if you are unlucky) chickenpox, vaccination worries etc etc doesn't come close to the endless appointments worries, surgeries, medications, gastrostomy issues and on and on and on! Frankly a big pat on your back for not hitting the person over the head with a nearby heavy object. We all get it and unless you are unlucky enough to be in this particular lifeboat, you've no chance grin

Thereonthestair Mon 10-Jun-13 21:09:28

Thank you both. Botox was fine, despite a few wobbles. Our paed is very "naice" and soothing, and means well. Ds got stroppy beforehand as he remembered the room. In fact he tried to make a break for it with his walker. Didn't succeed though. And he is still known as the child who doesn't like chocolate. My bag is always full of crisps and ,mini cheddars. Anyway he screamed and was then bribed into calming down.

I just do feel no-one quite gets it in rl. Dh went on a massive downer and was clearly worried sick. He still seems angry at least some of the time.

Got work vaguely sorted for today when we got back, and tomorrow is another day. Now we just have to hope and pray we get a boost from it having been done.

Thereonthestair Mon 10-Jun-13 21:11:54

Oh and I may look for the heavy object next time. I actually really like my colleague even though he is a jerk and has tendencies towards being a waste of space when it comes to work. I know his heart is in the right place really.....

sneezecakesmum Tue 11-Jun-13 20:36:39

Thereonthestair. Sorry re name mix up, I am old as DD keeps telling me! Glad all the Botox went well and hopefully you'll get a good response from it. DGS has not had Botox but the gastrostomy was a bit traumatic. Unfortunately sweets or savouries have never been bribe worthy....now the ipad..yes! Today i was looking after the 10 week old DGS2 for an hour+ in a stuffy car while DGS had cranio-sacral therapy. I finally resorted to ipad lights and music for him too! I'm amazed at how NT babies twitch and wriggle constantly. Researched a while ago and CP babies usually don't wriggle in the same way and its an early indication of CP and even which type. CST is a bit out there but lots have said it helps with anxiety so it won't hurt to try.

Anger is one of the grieving stages and in any case I should think we've all felt anger at the injustice of your child having CP and I certainly have raged about it, but it gets easier over time though I think it can get replaced with anxiety which DD is having at the moment. Going to book her for some CST if it helps with DGS. smile

I was chatting to another mum at RDA yesterday and her little boy has a brain tumour that is malignant and although its not there at the moment the shunt keeps blocking and she knows the tumour will keep coming back and he'll need another shunt operation soon, and I just thought omg how do you keep sane, let alone give her children all the love and attention they need? I'd be in pieces, and you just see kiddies being shouted at in the supermarkets, or mums who think the worlds ended because their toddler chipped a tooth! Rant over, but I've had my limit of vino today. I don't know what the answer but wine might be in there somewhere. grin

dev9aug Thu 13-Jun-13 23:35:26

thereonthestair I can relate to your dh re anger. Quite a lot of time is spent in my head blaming myself when things are not going so well but I tend to forget it when things are going well.

I hope you see some positive results from Botox. It is something on our to do list as well. How soon before you start to see the results?

amymouse Fri 14-Jun-13 00:06:41

thereonthestair I've felt very similar this week. DD got cast for AFOs and freaked out and screamed the place down. Had that moment (again) of why us, why her. And then no one really understands, although some do try. Some days, even if its just an hour appointment there, half an hour physio there, it just feels overwhelming.
Paed wants to try a very small dose of Baclofen to help dynamic tone. I'm on the fence(ish); have not heard too many good reports at the milder end of the scale. On a slightly cute side, DD has taken to wrapping bits of wallpaper sample and leaflets round her legs and calling them her "Ggggg[aiters]" whilst we wait for her new gaiters to arrive. Very sweet, also makes me a little sad and wonder if her legs are sore and she can't quite tell me. Maybe just having a grumpy day!

sneezecakesmum Fri 14-Jun-13 21:09:56

Amy DGS more than screams the place down when he has AFOs cast. Really, we all need earplugs as his scream shatters glass! Of course when he's screaming he's extending and ballerina toe ing it so they are so difficult to cast they need the departmental expert! Hope your DD got to choose a nice pattern for the plastic. We had tellytubbies last time.

Thereonthestair Thu 20-Jun-13 22:40:46

Hi. Can I just ask how quickly you get Afos. I went with ds in April, as I thought ds had grown out of last pair. They said no come back in a month, we did by which point he was far too big and blistering for the old pair. They let them out a bit and he managed another 8-9 days before blisters back. New splints after a fortnight which are a disaster and so we have nothing at all at the moment waiting for the next appointment. Which even as urgent is a fortnight. A further fortnight to get them remade but because there is only a half day clinic a week for the county we won't get the follow up appointment until 26 July!

I think therefore we will end up with no splints at all for 6-7 weeks because being 3 ds grew. Who would have expected a 3 year old to grow....! Well we did in April but were ignored.

The new splints are a disaster because the NHS trust has changed supplier (for cost saving). And because the orthotist did not listen to me or various others about what we needed.

Any ideas?

Anyone know a private orthotic clinic?

Anyone know how to get a referral out of county or do anything to get acceptable service.

Am at the end of my tether.

Lycra suit story is about the same. The wheels are falling off here.

Kaffiene Thu 20-Jun-13 23:40:09

There - First I think you need to put in a complaint which may speed things up for you. Contact the orthotic department and ask who you need to make a formal written complaint to.

I have unfortunately been in your position. DD was unable to walk at all without her AFOs and we had awful problems. Where are you? I may be able to piont you in the right direction. This place is used by a lot of post SDR people http://www.londonorthotics.co.uk/location/kingston-upon-thames/
But I do have to warn they don't come cheap over £1000 a pair!!! And usually take min of 2 weeks from casting to getting the finished product even through a private clinic.

Would peidros or other supportive boots help in the meantime? There are often second hand ones on ebay or via the Facebook SN page - cant link as am on my phone sorry. They weren't enough for DD unfortunately sad

dev9aug Fri 21-Jun-13 07:24:53

Thereonthestair, I have sent you a PM.

sneezecakesmum Fri 21-Jun-13 16:25:10

http://www.ortho-europe.com/orthoeurope/files/b6/b6f22061-165f-4a41-8828-48e6292cec62.pdf

These do DAFOs which don't need casting, but I've no direct experience.

sneezecakesmum Fri 21-Jun-13 16:26:14

We have a SPIO Lycra vest from America which has been very well tolerated and helps with posture.

amymouse Fri 21-Jun-13 21:59:44

We've been told there is a limit on how often we can have AFOs regardless of growth. Doesn't fill me with hope! I hope you find a solution there.

Very stupid question (I am exhausted this week and my brain has ceased to function, apologies): those who use walkers, for days out what happens when your child tires?! DD cannot manage for long either in walker or holding hands for support, but equally I am not an octopus to hold buggy handles/walker/child and they all weigh a tonne. She has just had a growth spurt and her legs have gone mad and I seem to spend large amounts of time carrying her everywhere/she gets stuck in the buggy. Maybe I should just toughen up and lift cans of beans each evening!

chatee Fri 21-Jun-13 23:14:50

Hi all,
AFO's - we had an absolute nightmare getting afo's at our local hospital - dd described as very complex. Wasted so much time attending casting and fitting appointments involving missing school and work with all the added expenses of petrol and parking charges at the local hospital.
At a specialist orthopaedic appointment in a different region we saw an advert asking for children/ young people to take part in a trial for a year.
We volunteered to take part and were accepted.
The trial involved being laser scanned for afo's and being casted for afo's on the same day.all details then sent to people who actually make the afo's and they made you a pair. The orthotist at the hospital did not know which measurements were used- but on the day of fitting we said that our afo's were made by the laser scanned method as they fitted so perfectly.12 months later at the end of the trial we were told by the orthotist that they were made by laser scanning.During the trial we had to fill in various questionnaires but it was well worth taking part as they were to this day the best afo's dd has ever had and actually lasted her 8 months, we only ever get a maximum of 6 months as she either stress fractures the afo or has a growth spurt.
At the end of the trial we asked if we could stay at the specialist hospital for orthotics and although they have to gain permission each time from our home area primary care trust( or whatever commissioning service it is now) we have not regretted that decision.
Cast middle of April, fitting next week and that includes the delay for waiting for our local trust to get back to the specialist hospital and also waiting for custom made shoes.
Do not be afraid to ask questions and challenge decisions- ask to see policies stating what you are being told....
Kaye walkers and buggies and wheelchairs and child!
When dd was using a pushchair we found that having one with handles was a benefit as we could fold the Kaye walker down and prop over the handles and it would balance on the hood part of the pushchair- just meant I would look a little silly pushing an empty pram with a child dawdling behind in a Kaye walker.
When dd progressed to a wheelchair the occupational therapist suggested to have ' knobs' placed on the frame of the handles so that we could hook the Kaye walker onto when dd got tired and used her chair- also for school trips otherwise dd would have needed 2 adults to support her- 1 to push dd in her chair and 1 to carry the Kaye walker( no way that would have happened) so the year in reception I had to go with the trip but by year 1 she was in her wheelchair.
The ignorant guy at wheelchair services( sorry I meant technician) really objected to this idea as it means the wheelchair is now bespoke and can not be serviced and handed down but at the end of the day you need a product that will meet your needs not what the technician wants as he is not thinking about you but about his budget.
Get the chair right the first time and you will have it for as long as possible , get it wrong and you will be having repeat appointments so therefore wasting time and money and a new wheelchair more frequently.
Can you tell we have the T.shirt? ( iykwim)

Thereonthestair Sat 22-Jun-13 08:41:19

Hi, thanks for all the comments of Afos. We hook the walker over the buggy (we have a baby jogger) and don't even fold it down. If I am with dh we tend to have one if us carry ds on our shoulders and one carrying the walker when ds tires. Have not yet got a wheelchair.

sneezecakesmum Sun 23-Jun-13 20:55:56

Ive created a conversation about research and theories of Karen Pape a neonatologist which is basically neuroplasticity, but has a lot of implications for older CP children.

here

It also supports what we have tried to do and create quality movements instead of quantity ones.

prissyenglisharriviste Wed 26-Jun-13 14:26:40

We used to hook the walker over the buggy handles too. Once we got the we it was either/ or - we made a decision which was going to be more practical.

On a slightly diff note (Tis madwoman) school is out here as we are in the middle of local state of emergency (google southern alberta flooding - our wee hometown made the front page of the torygraph last week). Dd2 is holding up v well. Highway is still shut in both directions. <sigh>

I get extra school holiday to deal with. Go me. grin

prissyenglisharriviste Wed 26-Jun-13 14:27:19

Once we got the 'wc'. Obv autocorrect changed it to 'we'...

Kaffiene Thu 27-Jun-13 22:57:19

We recently had the wheelchair/ walker issue recently regarding a school trip. I decided we needed to sort this issue once and for all and refused to accompany or transport her there. At first they said DD would have to spend the day in her wheelchair I challenged this decision and to cut a very long story short DD was supported by 2 people on the trip. Both support staff said it made the day so much more enjoyable and stress free for all concerned. They all had a ball. Wheelchair and walker were managed and staff toilet breaks were also covered.

On family days out we have a Special Tomato EIO the walker folds and goes on sideways. It was so much easier when she was shorter and the walker could hook and dangle down. I used a luggage strap the attach it to the handles so it hung down and didn't add to the width. And yes I spend a lot of time pushing an empty buggy with DD racing around in her walker! I do also have a bike lock and have been known to chain the buggy up so its nearer than the car but I have my hands free.

Tricks of the trade smile

Verybusymummyof2 Sun 30-Jun-13 22:11:12

Hello, I've posted a few times. Not for a while. I am relatively new on this journey so don't really have much advice to offer as yet.

Things had been good. But I'm starting to struggle again and feel my emotions slipping back to the bad old early days. Is this normal? When I think back to this time last year we have come so far but recently I feel her progress is stalling. Dd is 15months corrected and rolls, and can sit unsupported but only for 5 minutes or so, and over the past few days It feels this is slipping to less time with her extending again, something which had become quite minimal. The physio says that she can sit so is now focusing on the next stage. But I personally imagined this would mean me plonking her on the floor and letting her play. Stupid I know!
She needs me with her pretty much constantly otherwise she moans and crys, I'm feeling burnt out and have that awful feeling and thought of wanting her to be normal. Just wanted a bit of a rant to people who understand.

Thereonthestair Tue 02-Jul-13 16:41:41

hello Very busy. It does eventually get easier but yes it is normal ime to go backwards a bit now and again. You only need to read my posts over the last 2 years to realise that!

It is also very very normal to stall. DS went to sitting crawling and cruising in the space of 4-5 months (so late and slow) and cruised at 21 months. He still can't walk though. There are others here who went to walking at month 6. I think it depends on many things, not least of which is which muscles are affected. In our case it's hamstrings mainly not calves so he is not a toe walker. but balance is much much harder.

My lovely physio says once a child learns a skill they don't loose it again (I know that ASD children and degenerative conditions are different) but if its just CP then if your DD can sit she will sit and keep sitting. They also tend to say if you can sit by 2 you will walk.

Can you plonk your DD on a chair at all? Ot may provide one but we have this

www.johnlewis.com/east-coast-combination-wooden-highchair/p231249110

and just took the chair off and used it as a chair and table, put the toys on the table. Ds was a little unstable to start with but now he can get in and out of it on his own, and into his walker. But it does mean we could leave him, and he gets stronger all the time.

Some other children with CP allegedly feel vulnerable without their mum and that gets better too. DS has always gone to nursery so we don't really have that, but he does have a strong preference for me over his father.

Just by way of an update last week DS learnt to stand independently. It has been a goal since December 2011 but he can now do it! He is also now walking some steps with tripod stick independenlty. That has been a goal since last week. He'll walk one day she says....

Thereonthestair Tue 02-Jul-13 16:45:59

oh I also meant that once they stall they usually get unstuck though, but sometimes it takes time as they consolidate the skills they have got a bit. Physio should help with that and do tell your ohysio if you feel you are stalling. they should work with you. You may also want to think about a standing frame with a table/ledge if you want to plonk DD down a bit. It might be good for her legs, it will be safe, and it should allow her to learn some other age appropriate skills (toys/books/jogsaws etc) without always having to worry about falling

melmo26 Wed 03-Jul-13 19:35:37

Hi I was given a link to this page
I am new to all this about cp. We had our dd4 15 weeks ago and she suffered a stroke at birth which caused brain damage on the left middle part of the brain. Sorry I don't really know all the proper terminology for these things. I was wondering if for any of you was it obvious at a young age that your child had problems or did they change. Our dd has good movement in both her right arm and leg(although weaker than the left) a tight fist most of the time. She started rolling this week onto her side and today nearly onto her belly. Can this change?
I will be keeping an eye on this sight as it has great info thank you

Verybusymummyof2 Wed 03-Jul-13 21:10:49

Thanks on the stairs. Your reply was just what I needed to hear. particularly the bit about once the skills are learnt they don't loose them!
I am not sure what muscles are tightest in dd legs, must ask physio when I next see her?

Wonderful news about ds learning to stand independently! It sounds like he will walk soon! Is it just physio you do??

This CP journey is so up and down, periods of time feeling that all will be okay followed by periods of complete despair and frustration and so on!

i feel a bit more brighter than when i last posted, i was feeling very down, going to work for a 'break' on Monday helped and We had physio on tuesday, I expressed my concerns about her sitting going backwards, she had a good look and play with her in the seating position and actually said she thought she was sitting with improvement and the reason for the toppling was dd desire to move. We tried command crawling and she did it!! Not too far, but she moved unaided. So it's a start.

Melmo - hello. The early signs for my daughter were clonus in her ankles, maybe 8 beats at the most and a brisk knee reflex when examined by the doctor. She was very irritable and would go stiff. She had good range of movement and still does and her stiffness is mildish and comes and goes. Also curled toes, still are often and tight hands, although now her hands are much looser and she can use them.

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