Support/Information sharing thread for parents of children with CP - part 3

[itsnothingoriginal]

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, please may I join? (thanks for the welcome everyday )

DD is 3 and recently dx with "very slight" hemiplegia affecting right side esp leg and core strength. Born premature and not breathing. Awaiting MRI results to confirm but seems v likely. She is very slightly affected - she hit all milestones on time, I think the average person would just notice she walks a bit funny and falls a lot. She does get very tired which leads to, um, challenging behaviour mega tantrums. So far I think it's due to tiredness (and inherent stubborn personality) rather than a behavioural issue as such but we'll see.

I will mostly lurk if that's ok...

high-fives the mega tantrums and stubborn personality, I recognise those traits . Lurk away (I did for ages before I got hooked and started posting lol). Nice to have you onboard Minipie.

Hello minipie welcome!
I recognise the stubborn behaviour too

Had a very very proud moment on Friday. It was DDs nativity at preschool and she was an angel. Seeing her walk down with her Kaye walker down the little isle to the stage, with a massive grin from ear to ear on her face her frame was truly amazing. The emotions took over and I was in tears. I never thought this time last year she would be able to do this!
Incredibly proud.
It was the first time most of the parents had seen that she was slightly different from the others in terms of her mobility. With all positive reactions.

I like this time of year to compare what dd can now do compared to what she couldn't this time last year. It helps, on the days that I am feeling worried and overwhelmed about dd and her future etc. as sadly even nearly 4 years down the line i still have these days....

So maybe we can share our little ones achievements here in time for Christmas, so we can celebrate their progress no matter how big or small......

Its time to take a break from lurking to say hi to you all! Sharing this years achievements sounds like a lovely idea.
DS has reached new levels with mega tantrums, anxiety and stubborn behaviour, but has also learnt to use an open cup without a straw, is trying to use a knife as well as his fork, and said his line in his nativity so everyone could hear!
Next year will hopefully bring loads of confidence, a shiny new wheelchair instead of buggy, improved standing (please make progress), and a happy little boy. I'd like to skip the inevitable tears, jealousy when his little sister (who he loves) learns to walk soon.
I hope you're all well and enjoying the build up to Christmas!

thanks for the welcome, glad I don't have the only stubborn one, I guess the upside is they are determined to do what they want and that may help in terms of mobility etc... the downside is they are determined about everything else as well

What lovely positive stories Summer and Holiday

Smashing progress Summer and Holiday, these small moments mean so much to we parents This year our DD2 'ran' in all her 3 races for school sports day. Her run is a slow walk, but with a high knees technique. She wasn't just last, she was waaaaaaay behind after everyone else had finished. But she got the biggest cheers from the crowd and finished with the biggest grin!! Cue masses of teary-eyed parents

Great achievements holiday and everyday. Such proud moments!
Who knows what our lo will be doing this time next year!

Today, we met friends at a restaurant with a children's play area/corner. DD walked around proudly playing with the other DC in her walker whilst I was able to sit and natter with my friends. This is the first time I have been able to observe rather than be at her side. Another proud moment. And step towards her being an independent lady!

We did have to rise above the stares we got from other diners though . I know people are probably just curious but dd only has a walker not two heads!!!!

Anyway I hope everyone is getting excited for Christmas. The excitement levels are rising by the hour in our house as santas visit gets closer and closer

Woo hoo! Cheers to having a 'normal' visit with friends in everyday surroundings doing everyday stuff. I think we sometimes never thought we'd get to this stage too - it's great, isn't it? Glad you had a good day Summer

I find some of the 'starers' are people who want to engage but don't know what to say. So maybe say how well your DD uses her walker, but then thinks that might be rude to be so forward, so say nothing at all. So then their stare on it's own is actually quite offensive lol. I catch starer's eyes and smile, and then they usually have the confidence to say something nice. Of course you do get the numpties too .

We are getting stupidly excited in our house too, all ready for the big man's visit .

Merry Christmas, friends. Hope you're all enjoying the season.

Merry Christmas!! and A Happy New Year to you all.

Happy New Year, everyone! DD2 has received an orthotics appointment for Friday. This is unusual because I normally phone them for an appointment whenever I feel she needs the next size up on her moulded insoles. So I'm guessing the physio's referral for splints has gone through and DD2's being assessed on Friday as to whether they think she needs them. I feel really sad about the thought of splints, someone come on here and give me a slap share your splints advice and experience please [santa]

What sort of splints, every? Dd2 had leg splints for long sitting for a year or two (they were fine, her first pair had crazy zoo animals everywhere) and later she toyed with AFOs for six months. This year probably going to get wrist splints for support so her wrists don't tire as much when she is typing - how things change over the years! I tend to look at all these things in terms of support and functionality. If they are likely to promote independence/ increase functionality then give it a whirl. Nothing is irreversible. We binned the AFOs relatively quickly as while they were useful in terms of foot placement and stability, they decreased functionality in other ways (getting up from floor independently etc).

Happy New Year, everyone - and thank you for the little walk down memory lane with the nativity scenes . It's been a few years since dd2 gave up her walker, but it was the absolute bees knees in terms of independence and autonomy! Yay for all the self-propelled Angels!

Hi Madwoman, thanks for replying. The physio only talked about referring for a 'splints assessment'. I have no idea what kind, or indeed that there were different kinds. It's to do with getting the heel strike on the ground first, before the rest of the foot. I think I'm apprehensive as the physio said it might slow her walking down further, so I just know DD2 isn't going to like this. Yes, as you've said, I'm worried by possible decrease in functionality in other areas too (getting to a standing position etc). Physio also said she might not have to wear them full time - but I've no idea what sort of time they're going to recommend for wear.

You are absolutely right, we'll give it a whirl (if they recommend them) and hope that this is something else that will help support DD2.

Sounds like AFOs. They can be really helpful, but weren't right for dd2 here. We are interestingly looking at some other orthotics at the mo, as her gait pattern is causing some malformation with her toes, and the AFOs would have prevented that but sometimes you have to suck it and see.

If she toe-walks because of tight tendons, have they discussed Botox? We had a fantastic orthotist who was the only one ever to consistently get a right angle on her ankles - but he was super-pragmatic and offered a range of different things, as he acknowledged that you sometimes need different functionality... And that growing gals do eventually decide that wearing clunky boots is not a full time option

Yes, she's been referred for botox too, but for her arms rather than legs. We're waiting for that appointment to come through. I'm off for a google of AFO's - thanks Madwoman

Happy New Year all !
everyday we are only just going down the AFO route, well waiting our appointment. So not in much of a position to advise, My knowledge is very limited but I am not sure if I want them for my dd. as I can't really see how they will help her. The general aim is to improve/correct function (like madwoman has said) but for my dd I still think we need to work more on function and independence before trying to 'normalise' it and I kind of feel they are being given to us so that the health care proffessionals can tick a box and look like they are doing something?
I will however give them a go because it's worth trying anything if it means gaining a little more function/independence. Let us know how you get on everyday

will do, Summer

Hello all, happy new year!

Ok so what was a provisional diagnosis of CP (pending MRI) is now a confirmed diagnosis post MRI, clear brain damage on one side. No surprise really and now I can get on with telling her nursery, getting her into the NHS system (diagnosis was done privately via insurance) etc. I am very thankful it seems to be very mild. So far.

Feel like I have just entered a whole new world. A few questions I was hoping you lovely lot could help with:

1. Pain. DD complains her (stiff right) leg hurts sometimes, especially if she's been on her feet for a bit. Guess this is common? hate the idea of her being in pain regularly.

2. Sleep. She's always been a rubbish sleeper, wakes frequently. Might this be connected to the CP? If so, anything we can do about it? She needs the sleep so badly.

3. Treatments. Ok so I know the conventional ones, physio, OT, splints, orthotics, botox, baclofen, sdr. What about less conventional stuff? I keep reading about therapies - Bowen? Bobath? Anat Baniel? Is there a list somewhere of all the possible treatments... Probably unlikely to try these things, at least at the moment, but I feel I should at least read about them.
   Also - any small things I can do at home to help? For example I just read online a tip to put magnesium salts in the bath to help relax muscles. Anyone tried that?

I know these threads probably contain a load of answers... I am reading back slowly!!

Thank you

Hi Minipie. Happy New Year. Hope you're doing OK since your DD's confirmed diagnosis . Sorry I can't help with your Q's as our DD2 doesn't have any CP-related pain and is a good sleeper. I guess all kids are different, and I'm sure someone will be along shortly who can identify with those issues and pass on some words of experience x.

I haven't found anywhere that consolidates a list of holistic and complementary treatments. Lots of surfing on the web is where I found Bowen.

For us it's the everyday normal activities that help - DD2 is a member of the local gymnastics club, and that is a great workout for her. She is a member of the school craft club and that is great for her fine motor skills. We do gentle stretching at bedtime.

I like to keep her active and engaged and, above all else, involved. I am aware of her mental health (feeling included, valued, succeeding etc) as much as her physical disability.

Aaargh! Feel like such a dunce. Friday's appointment was 'Orthopaedics' not 'orthotics'. Not that I would have been much the wiser….

So it was our consultation for botox. DD2 is getting it for both her arms (she can't turn her hands palms up). So I expect lots of physio is coming our way and hopefully we'll see some improvement in her range of arm movement .

Still waiting for splints consultation then...

Thanks Everyday. Yes I'm ok. I get a bit sad when I think about DD in the future realising there are things she can't do or do as well as others (she will hate that) and I worry about her getting picked on for walking funny (and she also dribbles a bit/eats messily which might get her picked on too) ... but we'll cross those bridges if and when we come to them.

Glad your DD doesn't have pain and sleeps well - DD has always been a rubbish sleeper (and her sister is terrible too!) I suspect it's mostly not CP related but just wondered.

Interested to hear how you find Botox! When will she be getting it? Did they talk about any risks or downsides from having it?

Question for everyone - when did your DC realise they were different? And how did they react...?

We were told 3-4 month waiting list for botox, but it will be sooner if they can fit us between other surgeries at short notice. Risks are mitigated: she will have a general anaesthetic to ensure she doesn't flinch/jump during the injections, and she'll have an ultrasound to identify precisely which muscles need to be injected. No overnight stay; out the same day. I'll post again to let you know how we get on, but there are lots on this thread with botox experience too.

DD2 (age 4) first noticed she was different when she started nursery (age 2) and was in amongst her peer group. She was fine with it, very pragmatic. 'I need help to get up, but my friends don't' type thing. She would be sad or upset if she was excluded, but seems to be fine both with joining in with assistance, and lagging behind her peer group. For example, she loved being part of the team in school sports day and super-proud of finishing all her races, but didn't want her 'start-line' to be ahead of her peers, and didn't care she was last by a long way in every race. She has such a bright outlook on life and is more determined than anyone I know. I don't know if this is a CP trait, but it makes her quite a magnetic personality.

Dribbling & messy eating: Our DD2 does this too. I take a change of clothing every morning to school so she has her jumper and polo top changed at lunchtime by her 1:1. The extra washing is worth her neither getting a sore neck nor wearing a bib. Paediatrician has just given us Glycopyrronium Bromide to administer 3 times per day to help dry her mouth, so we'll see how that works.

Bullying: We've experienced the opposite. Everyone in the primary school knows who she is, and she's remarkably popular. She even has a 'boyfriend' in her class who dotes on her . I know this won't be the same for everyone, and might change on going to high school. But my step daughters had a class mate with CP at 2 different high schools and they said both were very much 'protected' (if that's the right word) by their close friends and both were fully integrated, accepted and had a good schooling experience. Now that DD2 is in primary and we have seen how well she gets on with others, I have little fear of what the future holds for her. I chose wisely (IMO) with her state primary though, and we don't go to our local one, but travel 8 miles away. They are chuffing excellent and its so worth the car journey every day. Ours welcomes parental visits before you submit your applications, so I'm sure others will too.

oops sorry, that was a bit long