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

Hello everyone,
I've really enjoyed reading your posts but have never posted on here. I haven't come across your thread before but after searching and searching I found it as I am in some real need of support.

I just wanted to check if its ok for me to join this thread and chat with you ladies?

My DD is 15 months old and was diagnosed with CP at 5 months old. She had a traumatic birth and was starved of oxygen! If its ok for me to join I would love to chat more.

Thank you!

Hi Amy. Of course it is ok for you to join this thread! I have found this thread to be really useful and informative. I have a dd 3 with diplegia. I don't know anyone in real life who is in the same situation as us. I have asked questions and asked for advice on many things and the ladies on here are all in the same boat as you are and really know were you are coming from.

Welcome to the thread. Tell us more about your dd if you wish?

Hi Amy, you're more than welcome to the thread, I am a relatively new joiner myself. I've found everyone to be lovely.

My DS is 3 in May (don't know how many months that is ). We haven't had an MRI scan done so no 'official' diagnosis as such but everyone has agreed that he's presenting as a child with spastic diplegia. We are going to have the MRI done early this year we think so we know for sure, after one of the consultants scared the crap out of me suggesting it could be some inherited deteriorating disease .

He got orthotics just before christmas and they're really helping him to be more independent although he still falls as his balance is very poor.

I find this thread a great place to have a whine when I'm sad or cross and I know the people here understand what I'm going through. It has really helped me feel less lonely.

Thank you for your replies! I don't know anyone in real life who is going through anything even similar and I an finding that really difficult.

My DD was born full term plus 13 and all was fine until the end of labour when her heart beat dropped and she was born not breathing for 9.5 minutes then resuscitated and cooled for 3 days. There was a high chance that she would have CP of some kind and she had an MRI at 4 days old which didn't show much damage. Since then she has been see by a physio and her and a doctor did say she has spastic dystonic quadriplegia CP but an MRI will show more where the damage is. We should have that in a few months.

My DD is lovely and happy but gets so frustrated as she can't do much independently. She doesn't sit unaided yet but we are hoping she will do soon.

I just find it hard to even come to terms with it and I often feel very guilty about her difficulties and wish so very much she was walking/toddling or even crawling around like children her age!

I promise I'm not always this negative!!!

It has been great to read about your little ones and the things they are doing! Very encouraging! Thank you for letting me join!

Welcome to the thread Amylamy! You'll get lots of support on here and lots of experienced advice if you need it. I've learned so much xx

Hi Amy I'm another mummy with a little girl who has CP ( only just had our MRI in December so no official diagnosis until our follow up) but physio says all 4 limbs affected, variable tone from normal to high, weak core. She is 3 just turned and can sit but still no crawling or walking (yet), but standing with support really well. She gets around on a little Vtech scooter and walking holding our hands.

The early days can be really, really tough but on here you can be as negative and sad as you want to be. There will always be someone to chat, hold your hand and help you through the low times and celebrate the good times .
This has been my lifeline, somewhere I feel I can be really honest about all my feelings, the sadness, the loss, the joy and the small breakthroughs which to us are MASSIVE! And know that the other parents will 'get it'.

My little girl learnt to sit unaided 17months - 18months. She was still wobbly but now manages brilliantly. So be positive that your little one will too x x

Thanks everydayaschoolday and smummerdaydreams. I feel better knowing im speaking to other Mum's who do get it. Everywhere I go u feel like I'm with Mum's telling me about what their lo can do now and it just really really hurts. I am so happy for them but at the same time I want to scream in their face and try up make them understand how that makes me feel. But then I realised they aren't doing that to be awful but just being mummies and then I feel totally horrible. Trying to get over that but it is so hard isn't?

That is great news that your LO can now sit summerdaydreams. And that she gets around herself on a scooter, My DD does like to stand with me holding her round her trunk and she moved her legs to go where she wants to. She loves to do this all day as she can't roll to toys and is desperate to get into things. I'm trying to get her up practice sitting lots though.

I was wondering if anyone had any experience with sitting seats that you can take on holiday. We have a brilliant feeding chair for at home with great support for DD's core but I can't find anything suitable to take on holiday with us. We have a firefly go to seat which has been amazing for shopping trolley's, fitting into some restaurant highchairs and swings at the park, but it doesn't fit up to the table and doesn't give much support so she can't use her hands. I've seen the tomato booster and liner and wondered if anyone had used this to support a none sitter (yet) while eating? She can sit for a few minutes if I am behind her but is u steady.

Thanks ladies and I look forward to hearing from you.

Thanks amy, if i was told two years ago dd would be able to scoot around on ride along, i would never have believed them, so keep faith! The early years really are the hardest as the question on all parents lips and topics of conversation all centre around milestones! All you describe is exactly how I have felt over the last couple of years.

Are you having physio input? And have you looked into claiming DLA (disability living allowance), it is not means tested and we use ours to fund additional therapies.

Also, I was recommended a great book on this thread when I first joined, it is called: teaching motor skills to children with cerebral palsy and similar movement disorders by Sieglinde Martin
I got mine off amazon and I am always dipping in and out of it for tips and ways of Improving our exercises. Can't recommend it enough.

Not sure of seating ideas, hopefully someone will come along who can help. If not, there is also a great FB page which is private called 'cerebral palsy uk' also worth joining.

Where are you going on holiday? We started with a bumbo, which worked well when ds couldn't really sit, then a combination of trial and error, used sling seats, had ds on my lap (a lot) I am good at eating one handed. Car seats can also work depending on context. Then moved on to what restaurants provided, often with cushions/towels stuffed here there and everywhere.

Thanks for posting about your DFG experiences Albaba. I hope it all goes smoothly with the plans and building works. Fingers crossed our application works out well too.

Welcome amylamy! Our Ds is nearly 5 with quad cp. I know it's hard seeing your DD so frustrated, but at least it means she wants to do these things and will keep trying. For seating we've been looking at products by a company called crelling to keep DS upright on school coaches where his car seat doesn't fit. It seems a bit overkill for your holiday needs now, but the harnesses seem quite flexible in how you can use them so might be useful later too. I wondered if one of the wheelchair harnesses would work for you as they look quite flexible on how they fit to a chair and you can buy just individual parts of at least one of them. Sorry if that's no help!

Thank you for all of the recommendations! Lots of great information. I will definitely get that book! And I will try all of the other things you have all suggested for seating. My DD does extend a bit so in the bumbo she just kind of tried to push our of it by doing a 'plank' type of thing and straightening up. She is too big for it now though. I will look into harnesses and things. We do currently have the goto seat by leckey but it doesn't have loads of support. It is great though as it can go in a swing or shopping trolley.

We have been having physio since birth and now have OT and SLT input.

I hope everyone is having a good day. Very snowy here!

Thanks again.

can't believe, I forgot, but Just remembered.......hearing you say dd extends a lot reminded me. My dd extended loads when she was younger, the bumbo was not an option as similarly she would arch out. We were recommended a cushi tush, similar to a bumbo but it has a high back and is far more supportive - was excellent for our little one. Very reasonable priced too.

hi folks. happy weekend!!

DD 2.5y really needs a bath seat her OT have us an otter chair but dd r really hates it and is frightened when she's on it we've tried with it for several months but even withthe straps she thrashesabout so much that she is hurting herself in the bath and just isn't safe.

have spoken to the ot about this but she seems reluctant to change it because of the cost involved. so I am looking for something myself.... I have seen the smirthwaite Bath seats but I think the back is too virtical for dd, she needs something she can recline in a bit.

Does anyone have any suggestions for good bathing solutions??

Hi goneHaywire. Our OT sources our support equipment from NRS Healthcare (I think they're in Nottingham). So I had a quick google of them a few months ago. While they contract to the NHS (hence the resource for our OT) they also sell domestically online. I've bought handrails, steps etc and have found them terrific. Disclaimer: while the equipment is great, this stuff isn't cheap.

They have a bathing section under their 'Paediatrics' tab on the left hand side of the page. I only quickly scanned, but they had this, and it might be a worth a look through their website for other options. Hope you find something suitable, wherever it comes from:

www.nrs-uk.co.uk/penguin-bathing-support.html

Oh, and NRS allows you to buy the products VAT free. Buying a disability aid for a person with a disability attracts no VAT.

Drip feeding now (sorry guys!) saw the Otter Chair on that NRS site too. Hope you find something, it's awful when our kids are frightened of something thats supposed to be helping them - as if they don't already have enough on their plates :( sending you

So today we had CDT Review and they told us Dd's MRI results.

She has significant PVL in white matter, but no damage in basal ganglia. The neurologist will confirm CP and type next month. I actually feel okay about seeing the report, I think I was expecting worse, (at 5 weeks old, she needed resuscitating for 9 minutes). Onwards and upwards...

Summerdaydreams

We were similar, in that DD2 was 10 minutes to resus at birth xx

Really pleased you feel ok about DD's MRI results summerdaydreams! My Dd was 9.5 minutes to resuscitate so similar but hers was at birth. How old is your DD again?

Thanks for info everydayaschoolday . I didn't realise it was vat free if you are buying for someone with a disability. I'm thinking of buying the upseevy leckey. Has anyone had any experience with this?

Summerdaydreams - just to say big hugs

My daughters MRI was also described as significant damage to the white matter and noted as PVL on her discharge notes.
There is a great UK PVL Facebook group if you are interested.

Amylamy Hi! My daughter was full term + 1 week and was also cooled.
She is now 2 yrs 3 months.
We've just got the Upsee, it does work well. If your daughter is initiating steps then you can use it without the sandals. It takes a bit of time to get used to it, but fairly easy to put on.
You can send it back within 45 days if you dont like it.

Hi Amylamey here's a linky about VAT on disability products. :) www.gov.uk/financial-help-disabled/vat-relief

Will join the FB page thanks.
Dd has just turned 3...

Hi everyone, quiet on here. Not been on this thread in a few weeks, I hope everyone and their little ones are well.

I had a question about scooters - I wondered if anyone's DC get on with one? He had a go on one over the weekend and I couldn't believe he could actually work it. It was quite a narrow one, the bit you stand on, and I wondered if a wider base would be good so he can stand if I want to pull him along? Not sure he could balance with one foot in front of the other in a line like that. We had one of those bug trike things, can't remember the name now, but he could never work it when it was the right size for him. Am astonished he can propel the scooter though but wondered if there might be one which was more suitable. I don't think he could cope with standing feet one behind the other and going over any pavement bumps etc, i think he'd fall off.