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

Blimey learned lots of new things today from this thread. for summerdaydreams hope you get that MRI soon and start getting some answers xx

Another night of panic , when does this ease of. I went to boot camp tonight to try and clear my head. The minute I've got home it's barring down on me again. It's also causing aggro between me and hubby he's totally positive and won't enter into the CP discussion until it's diagnosed. I'm annoying him by harping on about it and breathing heavy???? (His words). I feel like I've got CP terrettes. I'm telling anyone who will listen. I need to calm down just don't know how.

Hi Summerdaydreams thank you for the reply, sorry you've had such a horrid day I hope you get some answers soon.

Ds was delivered by c section at 37 weeks as they had concerns about how he we cope with a natural delivery. I also forgot to mention that he has some difficulty breathing and is on 24hour oxygen, I didn't know if this could also be related or one of his separate issues?

Sorry, also meant to say that we don't have physiotherapy yet. Hopefully getting that organised at paed appointment tomorrow.

Bedsheets I do remember those moments of utter desperation about DD and the not knowing in the early days. I think men can be in denial as a coping mechanism. Hope you've got supportive friends/family around you..

Louisajane hope you can get physio sorted out tomorrow - made such a difference for my DD and I'm sure you'll already know the younger they get started with it, the better.

Summerday 're speech - DD has really good speech which can just be a little slurry when she gets excited but I was also more worried about this than anything else given the nature of her CP. Keeping fingers crossed for you about the mri x

would anyone mind if i post pictures of my daughters feet. ive noticed this today while doing physio and would really appreciate someone taking a look.

Thanks for the links everyone x

Hi everyone, thank you for the help. I had a good app with paed this morning. He agrees that ds2 is very floppy and is suffering from spasms but its too early to tell what the cause is. He has made a referral to physio so hopefully that will start soon.

Glad to hear the appointment went well today louisa and that you have been referred to physio.

bedsheets - don't feel you have to calm down, that is just your way of coping and processing what is happening just as DH's way is to be positive and not talk about it. I was very is similar. I had two amazing friends in RL who would listen to me and let me cry and go on and on and obviously this forum was a godsend too.

Post the picture - someone might be able to help.

Hello :-) i decided not to post any photos , it's more torment and until diagnosis I actualy know nothing concrete.
Hope everyone has had a good day, it's been sunny here in Essex .
I had a breakdown today it had been bubbling away and now it's out I feel stronger. Sudden realisation that it didn't matter to me having a child slightly wonky is ok, she's so bloody funny I'd take her over anyone anyday. Glad I'm here in the acceptance of whats coming and not in the frantic worrying mess I was in.
I have found over the last 9 days that I've neglected dc1 my son .
His needs havnt been met and my anxiety has probably added to his challenging behaviour. Dd is still so very young she naps 3 hours in day and 12 hours at night. Keeping up the physio is taking up a large chunk of her awake time and annoying my son. When we are not doing physio I seen to be giving her so many cuddles because I've caused her discomfort during physio I feel horrendous guilt .
This is such a learning curve. How do your other children adjust to having a CP sibling??

Free to good home! I have 2 neckerchief bibs (unisex) from Fledglings. Brand new, but too small for DD2 (who is aged 3 - I need to order the Size 2). Both are Size 1 (dimensions are given in the brochure) - one navy (waterproof reversible) and the other red gingham (waterproof). Featured on page 11 of their brochure:

fledglings.org.uk/docs/pdf/brochure

Happy to post them on to someone who like us might have a little drooler :) If you are happy to pm me an address (don't need name, I can just put to the Mumsnetter if you like), I'll send them on.

It's funny how sometimes things just hit you. My dh sent me a photo by phone today, I am at work. It was a group picture of preschoolers at their last day of a craft group that they go to. All the other children were standing there in shorts and t-shirts and nice dresses and sandals looking cute and looking like typical two and three year olds. Then there is my dd at the front being held by a staff member and wearing afos. She just stood out as being different.

I think that we kid ourselves that she is doing well and is just a bit behind but it was when I saw her with a typical group of 2 & 3 year old she is different and she does stand out as being different. Even more cruel when she has a twin with no special needs. It just struck me all the appointments and stress and worry, that most people don't have that. Most children just meet their milestones effortlessly were as for my dd everything is an effort and a struggle.

Albaba how old are your daughters. I understand about thinking they are doing ok then something stumps you . My friend had her second son 7 months after my daughter was born . He's now walking about whereas my daughter is still knee walking. I see my friend about 3 times a week and it smacks me in the face everytime x

bedsheets, my dd with CP is 2, I have another dd who is 5. It can be a juggling act, and i do feel guilty i give dd2 more time than dd1 but then i think that is the case with all families with more than one child, regardless of additional needs.

She does need more time, and I think dd1 gets that, but I do try to have some one-on-one time for dd1 too. Usually when DH gets home.

With the physio we try to incorporate it into our daily lives, stretches whilst getting dressed, before bath. Exercises through play whether that be at home, round friends or in the park.

You'll work out what suits you.

Alabab I understand you. life isn't fair, it is bloody crap. I know I too kid myself that dd will catch up, she is delayed etc, etc and so seeing it in front of you in a picture hits home. It's natural. But also natural that you will notice the differences more than anyone else, because you know her difficulties. Others will probably barely notice.

Sometimes I feel like shit, particularly seeing dd with her cousins who are younger and already whizzing past, often hit like a dagger. Dd can't crawl or walk and i think why cant she be like that toddling around without any effort?? It's not fair, but on a good day, and more often, lately, I see dd who is different but only because her body can't move normally and with ease like others, in every other way she is a normal little girl loves her dolly, buggy, peppa pig and toy dogs. Sending you . This CP journey can suck at times.

Albaba my ds is older I think, and I just wanted to tell you that this year we are buying a nursery picture because ds who cannot walk is half way up the climbing frame (I have absolutely no idea how he got there) In a group of his friends. It the leavers picture and yes he is different with his Afos and his walker but he fits in, in a funny way, but he is one of the group and doing something I have never seen. He still won't catch up but believe me it does somehow get easier.

Summer funnily enough I did physio today whilst out and about . We did it at the park. I've using an ironing board with toys on to stand dd against.(it's annoying become part of the furniture) it meant ds could run around and climb an dd and I stretched to pick Daisy's . It actualy felt better to not be stuck at home. Xx

BEDSHEETS. My daughters are two years and eight months old. Her twin has been walking since she was 19 months old, 17 months corrected age. There is now no stopping her. She is running, climbing and jumping!

I think when we are at home I think that my dd with cp is progressing well. She hardly ever crawls now. If she does I say "X feet only please" and she gets on to her feet. Her personal best is 40 unaided steps but she still looks quite awkward and has to use her arms for balance. Its only when I go to the like of play groups that I realise she is miles behind, I reckon she is at least a year behind were she should be. It is especially hard when children who are younger than her are up on their feet and doing more than she is. Her twin is now refusing to use her pram and wants to walk everywhere. We were in a shopping centre last weekend with our double pram. When my dd with cp saw her sister out walking she was "me want out to walk too" which of course we couldn't do. So even though they are twins they are at different stages which makes things difficult.

SUMMER. My dd is intellectually very clever. I feel so sorry for her that she wants to do things but her body won't comply. It just seems very cruel and unfair. She is the same loves her toys, dollys, cartoons. It's just hard when yours is the only child in nursery, classes etc who can't walk by a mile. Most of the time we have accepted it but just when put with peers of her own age it is so difficult because I think you should be doing all that too.

Hello , hope you've all had a good day. Has anyone's little one had to have a blood test to rule out muscle disease?? We have 1 booked for Monday.. Surely muscle disease would show all over body ??

Summerdays.. Don't panic about the diagnosis of athetoid cp there are as many variations along this dx as there are with spastic cp. Ranging from very mild to very severe. DGS is GMFCS 4 so very much at the high end but he also does not do the writhing movements! He is dystonic choreoathetosis quad. I know far more about this than spastic but it is very difficult to grasp as DGS does not conform much to the dystonic or the athetoid descriptions. However he was dxd as spastic quad for 2-3 years! We knew he wasn't but who are we? He does have slightly tight adductors but nothing major. This type of cp shows itself more between the ages 2-3 but they do not deteriorate. They just show more clearly the things you have noted like the fluctuating tone.

I know via fb of children walking, talking and so on and google always paints the worse case scenario. Although DGS doesn't speak very clearly. Again basal ganglia damage, which is the type that happens with a traumatic birth rather than prematurity.

The good side is that intelligence is usually normal or above. Epilepsy is less usual especially with mild children. You don't get contractures or hip displacement and ROM is usually normal. Operations like SDR and tendon lengthening are not usually on the cards (though every child is different and you can get mixed pictures). There are drugs that can help. The worse part is the extension pattern of movement and the speech problems and the poor fine motor skills. But a lot can be done to remedy these so it's just a different set of problems to work on!

Probably your upset is because you thought it was all mapped out and you just could get on with it and now you are thrown into unknown territory! If you want to pm me or ask questions on this thread, I have a few research articles and can do what we all do so well which is to pass on information we have gathered athetoid cp is much less common (around 10% I think) so much harder to get the information you need and physios and OT are more clued up to the spastic type of cp and you can end up with exercises and equipment not suitable

Hi there, I wonder if you can help.
Dd1 is 5 years old and has spastic diplegia. She walks unaided and can scoot well. At our last physio session, we've set ourselves the goal to get dd to ride a bike. The plan is to have her on a normal kid's bike and attach toe clips to the pedals (without straps, so she can easily take her feet off the pedals at any time).
My problem is, I cannot find toe clips for children anywhere online! Has anyone else needed to stop their kids' feet from sliding off the pedals and found some toe clips or another good solution?

Can you attach a pair of crocs to the pedals the type with the back strap then she carry her shoes in a little rucksack.

Hi again Jokat :) Sorry, I don't know about children's toe clips.

However the brilliant charity Cerebra have an innovation department and might be able to help out with a bespoke design or find a suitable product for you. I'm sure there are lots of parents out there (me included) who would also be interested xx

www.cerebra.org.uk/CIC/Pages/default.aspx

Does any ones child have issues with their feet? My dd has quite small feet but they are quite chubby. She has what is known as a valgus foot deformity. When she is standing her feet roll in and she just looks really uncomfortable and I think "how on earth can you possibly walk on feet like those?" We have seen an orthopaedic surgeon who says she may need surgery when she is older something to do with a fusion of the bones. She is passable when she is wearing her piedro boots or afos.

I just feel really sorry for her and think about the future. Will she be able to take part in sports or will her feet always hold her back? Will she also always have to wear afos or piedros or will she ever be able to wear normal shoes? Her physio suggested that once you had afos they would usually be long term but some children get downgraded to shoe inserts. It probably sounds silly but we were in the park yesterday and there were wee girls running about in pretty sandals and my dd had a pair of clumpy afos on, on a lovely summers day.

If you children had foot issues have they been resolved or what did you do about them. Thanks Albaba.

Agh just phoned docs to see if dd bloods were back, they've tested for muscle disease. Receptionist told me they are back but her doctor is yet to comment on them. I don't often moan about the NHS I'm thankful we have 1 but this is so bloody frightening and huge . She asked if she wanted a note sent to him to hurry it through. Errrrrr YES!!!

Thank you everyday!
I've told our physio about this issue and she will do some research as well. My plan B is to get hold of size Small adult half toe clips (they are less enclosing than proper toe clips and don't have a strap attached) and see if we can attach those to her pedals somehow. If that doesn't work, I'll contact that charity. I shall let you know about any progress!