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

Massive tangent, but this was the fabric I was on about www.tenura.co.uk/tenura-non-slip-fabric-2

Another tangent at our sdr follow up we had quite a long conversation about visual perception and cp. One outcome of which was that the physio mentioned research that computer games especially super mario etc gets the pre motor cortex working helps reroute the neural pathway which in turn helps movement and walking.

Now it both sounds plausible and bunkum, and DS school loved us when we said play computer games, but I'm a bit of a Luddite so haven't got an Xbox, wii, Nintendo but if it might work I'll give it a go. Has anyone come across this either by anecdote or research? And at a more basic level any thoughts on best systems or games?

That's interesting, where. DD2 does play running games on her tablet (like Mario, but not) and she's incredibly good at them. I feel better about her tablet time now if there's a chance that it's helping reroute neural pathways . Does sound plausible, watching with interest...

We keep looking at RVs but nowhere to park it. We'll get one eventually... (Actually I REALLY want an old Airstream, but am not prepared to settle. I found a website where within, oo, three days drive in most directions I could have had my pick, but sadly there always seems to be something else to do with the imaginary umpteen thousand dollars... Sigh)

Dd2 has played computer games for a long time. We started with a v tech smile (the orange and purple one) It actually started out because we were caught in a bit of a wheelchair conundrum (bear with me...) - physio assessment showed dd2 was unlikely to be able to self-propel a wheelchair, as she had a lot of retained reflexes etc that meant if she used her arms, her head went down, so she could either self propel, OR look where she was going (not great for the safety of herself or passers by lol).

Anyhoo - the v tech smile was a reasonably inexpensive option to see if she would ever be able to manipulate a joystick/ controls, which could later be used for powered chair. To be honest, it was all a bit of disaster to start with, but she gradually caught on and her ability to manipulate the controls improved. The good thing about the smile was that you could switch the controllers from left handed to right handed play really easily, so it was ace for physio

We finally caved and bought a wii a few years ago, and she adores Mario, and this Christmas ds1 (14) finally got an xbox, so she is learning how to kill people as well. Which is nice.

I would probably agree that using controllers builds new neural pathways, but tbh so does blooming everything. No idea about the link to walking! I have pretty much tried to give that kid as many different experiences as possible, and to try and get her to try everything possible - none of it is wasted, it's all contributing to development in some way.

We also knew from about 4 or 5 that she would ultimately be a keyboard user in school, so familiarity with devices, consoles and keyboards of all types has been important.

I should add that we were literally the least techy family in the world until it became apparent that we could use it for advantage lol.

Just because some of you will get why I am smiling, ds has just announced he is going to learn how to do a cartwheel... Given he can't walk I am hoping his physio is up for a challenge.

Loving the cartwheels aspiration! Not long after DD2 started walking (so very unstable), the game she chose for 'golden time' at nursery was dodgeball!

Does anyone else have to wait stupidly long times to get piedros/afos etc?

My dd is supposed to wear piedros or afos but because the waiting lists are so ridiculously long hasn't been wearing them for months and is just wearing a pair of ordinary canvas shoes with Velcro straps. We picked her up from nursery today and were told that they though that her walking was deteriorating. She was going in at the knees and couldn't keep her balance and was stumbling and falling. They thought that this was because she wasn't wearing proper supportive footwear.

She is 4 years old. 6 months wait to get a pair of piedros!! By the time she actually gets them her feet will have grown. We were fitted for afos in November and got the appointment through to get them for March!! We had this problem before that she had been without afos for so long that it took her ages to get used to wearing them again and really set her walking back.

It's just so frustrating. We have tried complaining and got precisely nowhere. I feel like shouting "my child needs these to help her walk. Don't you understand!!" Sometimes it just like you have to fight for everything and you are just a name in the system and no one really cares.

We have had this, and all parents complained, and more resources were found (2 orthotists rather than 1). Now we wait about 2 months which seems ok. When things were bad we used to get the referrals based on expected growth spurts..... It is not acceptable so complain.

Wheelchair services in the other hand currently ben waiting 19 months ....

On the subject of footwear... DD is currently in fairly solid leather ankle boots, kickers style. Is there a big difference between those and piedros?

DD2 is out of piedro's now, but uses the orthotic insoles. Yes, we have a 2 month wait, so I book appointments long before we've grown out of the insole, as it's then a 2-week wait to get the insoles to the hospital. Your waiting times are ridiculous, Albaba . I bought from an local independent or Clarks retailer for a sturdy boot before DD2 got her appointment with orthotics. They were better than canvas shoes (too soft for DD2, no support). Wheelchair services for us is 9 months wait.

I think Kickers are a good alternative to piedros, Minipie. Seen them mentioned on here a few times.

Whenever it became obvious that dd2 was struggling (falling more etc) we just went and bought kickers. If you have an indie shoe shop locally (we used to have to drive around 40 minutes, but it was worth it) there are also a lot of European brands that are great alternatives to piedros - elefanten etc. the indie shop assistants will have a good understanding of which brands are the most supportive (our physio recommended a good indie shop for these things).

They are expensive, obviously, but we were in receipt of DLA, and that's really what the money is for, so although it was a pain, it was doable. Our orthotist would also order additional piedros for us at cost (useful for summer if you want to try the piedro sandals etc).

We didn't ever have a problem with appts etc though - just sometimes we were caught by surprise by a growth spurt, so went straight out for the kickers etc while we were waiting, instead of having her stumbling and falling for longer than necessary.

Al, are you switching betweenAFOs and piedros? We have a raft of shoes for AFOs (usually bloody Vans), and the piedros (with neuro foot beds) were separate (never used together, for obv reasons). Our orthotist was great at getting a lot of variety in, so there was always an alternative if she had grown out of one. And if all else failed, head to the store for kickers, or further afield to the indie.

Hi everyone, how is everyone getting on?

More questions from me sorry!

So, I now have the neurologist's letter diagnosing CP and I'm off to the GP next week to ask for a referral to the local neurodisability team (luckily we are near a very good one).

Do I just ask to be referred to the hospital team, and then all the various services (gait assessment, orthotics, physio, OT etc) are through the hospital? Or do I need lots of different referrals?

Also - the neurologist has recommended a full developmental assessment for DD, more to rule anything out than because there are any concerns. (I think she sees a lot of "money is no object" families!). What are the chances of getting a referral for this on the NHS? Slim to none I imagine? DD's behaviour is definitely challenging but I think that is mostly due to tiredness, nursery think so so I guess (hope) there are no underlying behavioural issues.

Anything else I should ask the GP for while I am there? I am thinking of asking for an iron test as she is constantly tired, yes of course that could all be down to the CP, probably is in fact, but I'd like to rule out other possibilities (she is very pale/pale lips etc but so is dh).

We've had several full developmental reviews (in some places there are centres that the kids attend every day for a week, and see the full range of experts - we went to HEPAC - Hugh Ellis Paediatric Assessment Centre - I assume it is still there). All NHS.
We moved a lot, so were always having to set up a new team. Usually our existing paed just referred us to the new paed, who then referred us to SLT, OT, PT etc. Physio would then refer to wheelchair services/ orthotist etc. It probably varies a lot depending where you are. I would request paed referral three months out, and usually by the time we moved, we had already got an appointment booked with the new paed. Some areas just referred us straight to therapists after saying hi (and let the new therapy team carry out their own assessments) some areas booked us for full assessment (like HEPAC) prior to referral for individual therapies.

The only thing we have ever paid privately for was a full ed psych assessment - she was already under the Area IncO in any case (statemented as was) and had 15 hrs 1-1 in school (school also had a little girl who was VI with 15hrs 1-1, so they provided ft 2-1 for both girls with our agreement). We needed as much evidence as we could get that she did not have any learning disabilities (not usually the reason people go private lol!) - we were applying to emigrate and required proof that she would not be a 'burden on the state'... Long story. Anyhoo, we had a full ed psych assessment done so that we could include the report with all the rest of them. (There are a lot of assumptions about cp automatically meaning learning disability, and we needed an accurate picture of dd2 to present with our applications, as we knew it was going to be hard).

There is no reason why your referrals shouldn't be NHS, is all I am trying to say - and usually the current paed was the conduit for all referrals. Do you not have a community paed already? If not, then that should be the referral you request from GP.

Nursery should contact the Area IncO (or whatever term they use in your area) and let them know - if they think it is necessary, they can come out and do an observation. If she is managing fine, then there may not be a lot of need, but sometimes it's good to have an external PoV.

When we moved here, we had to learn a whole new vocabulary (different areas call things very different names) but our main doc in the hospital is a physiatrist. I had never heard of one either!!

Good luck with your referrals!

Thank you madwoman, my head is spinning a bit after reading your reply !

I will have to google HEPAC, AreaIncO, ed psych, community paed (had assumed we'd be referred to neurodisability?) and physiatrist!

Luckily the GP I am seeing is very experienced in paed stuff and has been in the area for ages so hopefully knows how it all works near us...

Hi everyone - had little DD this month so this thread has dropped off my radar

Nice to see the equipment chat, I'll be googling some stuff later to see if any of it will help my boy

We have our SDR assessment in a few weeks, getting worried they won't think he's suitable

Nope we don't have a community paed. We have nothing NHS at all so far. I went to the GP, who said there was nothing wrong with DD's walking (based on 4 steps in her office ) but since we had medical insurance agreed to refer privately to a paed orthopaedic consultant. Ortho consultant referred to neurologist, neuro said probably CP and referred for MRI, MRI confirmed white matter damage. All privately. We've also done some private physio.

So this upcoming GP visit is our first real "way in" to NHS medical care for DD, iyswim.

We don't have a paed either.... Long story we had one then fell of her radar when we disagreed on something. We do have therapists though and use the gp to refer us to the clinical commissioners as necessary.

Congrats babs. And good luck with sdr, ds had it and is doing well, but do bear in mind it is not a magic wand so it should never be an assessment where everyone is suitable, when it works great (mainly) and I have no regrets, but ds is doing well but not fantastically and 12 months in there will be no lightning bolt in our case. He is better, but still using the same frame, walker, sticks and orthotics.... Just less tired and more natural when doing so. Apparently this is actually pretty normal, and by now some children are in decline again.

We are now on all things visual perception which is rubbish for ds and adding problems to waking reading and writing, but hopefully we are just about to move ds onto computer use at school.

Congratulations babs on your new little bundle, what wonderful news hope DS is loving his new role as big bro and I hope SDR referral goes well. I think that is something we may look into for DD.

Things have been going well, dd turned 4 and has all of a sudden started crawling , legs splayed a bit and often sitting in the 'w' position but nonetheless less is getting round on all 4s. She was also seen by an educational psychologist who assessed her as being developmentally on track in her play, social, speech and language.
That was last week and for the first time in a long while started to feel that despite the cp, things would be ok. All looked rosey.

That feeling lasted all of 6 days because today we had a routine ophthalmology appointment and they chucked a curve ball at me to say that we should look to register dd as visionally impaired. Wtf??
Dd wears glasses but had always been told that the prescription was very minor and it was because of a slight squint that glasses were necessary. Apparently they think the PVL is causing some disruption causing 'crowding' this may make reading more difficult because the brain struggles to identify letters when surrounded by other letters. Iykwim?
Does anyone have any experience of this? Sorry it's a rambled, just when you think you can't get any more upset.

Summer, that's very similar to some of the visual perception stuff we have been talking about. Have you got an ot, ours did a collection of tests, and then has come up with a collection of methods to train that part of the brain.

I also have a friend who is registered as visually impaired due to hydrocephalus, he can read write and just about keeps up with his peers (and when he doesn't it is a result of other issues). They have input from ot, sensory stuff as well as conventional ot. They also get a lot of help from RNIB even though their son can see in a conventional manner.

Sorry I can't be more help, but there are things to do.... Hang in there you'll be fine,....

Thanks where that's reassuringly to hear.
I will have a look into visual perception. We have just recently met our OT (after moving areas) so I will update her with the visual impairment side of things and see what she can offer.

I wonder how accurate the ophthalmologist can be too? I am pretty sure dd was mucking around a lot during the test as she was more interested in getting back into the waiting room to continue playing Lego. i guess it's another bloody 'wait and see' situation.

I just want dd to be able to read and write and feel sick that on top of her physical struggles she may have difficulties in this area, especially after Being told she is exactly where she should be in terms of all other development.
Today, I was wondering how many hours I have spent crying about dd and this shitty premature/CP situation.

Not sure if I need this thread or not.

My baby was born easily and no major events at birth. However there were concerns about her growth in the final six weeks of pregnancy.

She has always coughed and choked through feeds, but concerns were brushed aside, we fed her upright. It helped.
At 6 months old she started with an occasional droop on the lower right side of her face. I wasn't sure if it was just the way she was laying as it mainly happen when she was asleep. I spoke to the HV about it and was told that because she uses both sides when smiling don't worry too much and see the GP if I was really worried.
Weaning was slower than my other 6 children and we did use purrees more.
At 9 months I was still worried about her mouth especially as when awake I could see the droop. She was also still coughing and not babbling at all.
We went to the GP at the end of January. He sent us straight to the hospital to paediatrics. Paediatrics checked her over and booked a MRI scan to be done within 4 weeks and to see neurologist. They are looking for a brain lesion. The MRI was done a few weeks ago under sedation. We see neuro in April.
I self referred to SLT. A videofluroscopy revealed aspiration into lungs with thin fluids. We now thicken fluids with carabel for her. This has lessened her choking and chestiness.
We had a developemental check this week. Due to no weight bearing, we now have a referral to physio being put through. We also have a referral to eye clinic due to two of my other children having glasses. A hearing test needs to be done just to make sure we aren't missing anything there.

So, the general feeling is that baby has had a stroke at some point. Which has left some brain damage. However we won't know until the neuro appointment in April.

Despite all of the above, she is generally a delightful baby, with a mop of black curls and a cheeky grin. She is doted on by all of us.

Hope you get some answers soon misdee, sounds like she's a very loved little girl

We got the approval for SDR and are waiting for the date but it should be end of May/June. I know it's not a magic wand and he will still need daily physio but hopefully we will avoid contractures and deformities in the future plus removing the spasticity should mean not as many issues with growth spurts and less tiptoe walking which is currently a major cause of his instability. Hoping to have him back to where he was strength wise by the time he starts school in September.

Summer sorry to hear you now have worries over DD's vision. 💐

Hello missdee how is your dd getting on?

Can anyone give me any charities they contacted who funded a trike? I remember everyday your dd got one?
Tomcat rep came out, dd loved cycling and did it so well but obviously we can't afford to get one on our own.
How is everyone getting on?
Dd got her primary school place and is looking forward to being with her big sister.

We have an appointment with wheelchair services soon too - any advice on this?
Although dd needs one and is ready for one, I am so very sad about it

We got the results of her MRI last week. No visible damage. So not cerebral palsy. But they don't know what's wrong so sending her to GOSH to see neurology there

Summer, Cerebra founded our DD's Tomcat trike 3 years ago, but only 80% if I remember right. We paid for the rest, but I think you could go to other charities to fund the rest.
It's been THE BEST thing we got for her, she absolutely loves it and she can now use it without the carers control handle, which is a huge achievement for her
Hope your DD gets her trike soon, good luck xx