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

[minipie]

Hello! I haven't posted for a while ages. Hope everyone is doing well.

How are you finding the botox Everyday?

We are having some issues with DD... Physically she is doing amazingly well, you would barely know she has CP, she is down to 6 monthly physio and that's it. I'm so proud of her, I know it must be very hard work for her compared with her friends.

Behaviour is another matter though. She's being hyper and silly a lot (blowing raspberries, running away) and it's so hard to get her to do anything like brush teeth or get dressed. If you push her or impose consequences she ends up having a huge tantrum and she can't seem to calm down. I'm beginning to wonder about some kind of autism/PDA alongside the CP though it's hard to know how much is just extreme tiredness (because of the CP/being very active/not sleeping enough) combined with being 4 and how much might be something else. Anyway just venting really. We have an appointment with her paed in March so I guess I'll raise it then.

[Everydayaschoolday]

Hi mini! Glad to hear the physical side is going well. We have similar behavioural issues.

While DD2 is very motivated and asserts her independence, she also tires quickly. School concur. However, if she gets upset about anything, she goes into a disproportionate level of upset for whatever the issue is, and it takes a disproportionately long time to calm her down again. I don't think meltdown is too strong a descriptor. It is as if she feels emotions stronger than the typical child. But the same is true for her happiness and lovingness: disproportionately strong in comparison to her peers IMO.

Minipie, the botox did facilitate some improvements in arm movements, but we did do tons of physio afterwards, and it's really the physio that's the important piece. She now has botox scheduled for her hamstrings this monday, and again I've arranged with the physio to have another 6-week block of treatment afterwards. So alternate arms and legs botox. Following the success we've had with her first round of botox in her arms, I'm glad we did it, but I don't think it will be a long term venture, as they say the earlier injections of botox have the most effect and then they become gradually less effective the more you have. And of course, the botox injection itself only lasts about 6 weeks so its really intense physio to make the most of that window before the effects start to wear off. But it's good for us now in the early years.

Good luck with your Paed review in March (we're 3 months overdue our annual and no mention of it yet). Glad you are well matey. Nice to see a familiar face x

[Everydayaschoolday]

I'm going to post this on the main SN Children's board for advice about Disapplying for Key Stage 1 SATS, in order to catch a wider audience. But if any of you guys have any experience, feel free to jump on in!

School have asked us to consider if we want DD2 to sit her KS1 Sats next year. If we want them to Disapply for her, we need to let them know around Nov 17. Current scores are 'Working Within' for all criteria except writing which is "Working Towards". I'm trying to gauge pro's and con's for Disapplying so we can make an informed choice.

[B1rdonawire]

Looking for advice please My DD (5) has mild CP and is independently mobile with orthotics, albeit with very precarious balance. Over the past few months her legs have started to be more wobbly and one in particular just "goes from under her" fairly often sending her crashing down. It's connected to a big twist in her knee, we think. She also often reports "tired legs". She likes to come out for a walk and really wants to do everything for herself, but nearly always ends up being too tired and needing to be carried for part of it. She's getting heavy now and my back is complaining. We do have a two-person trike I can pedal and she can ride, but she gets bored if on there for too long. Does anyone have any solutions to how I can "transport" her after she gets tired, without breaking my back? I was considering pulling her along on a scooter but she would still have to stand and retain her balance, so not sure how much that would help. I'm a bit stumped! Would be very grateful for any ideas.

[mumsnit]

Gosh B1rdonawire that takes me back to my dd at age 5!! I still carried her a lot (piggy back) at that age and it did become an issue for a while. Do you have physio that can advise? What about a Mac Major just for those times she's getting really weary?

We do pull dd along on a scooter when she gets tired. We have a large sturdy 3 wheeler scooter which is quite easy for her to balance on.

[B1rdonawire]

Thank you! I'm going to give the scooter a try then, I feel encouraged and do a lot of squats to try and get strong enough to keep carrying her

I'll keep an eye out for a mac major, thank you

[Everydayaschoolday]

Hi B1 😀. Our wheelchair services gave us the choice of a SN buggy or a wheelchair. Long waiting list, but worth it. Our DD is also 5 and uses her wheelchair only occasionally - days out usually. Our DD sounds like she is much the same as yours: can walk with orthotic support, but tires quickly.

[melmo26]

Hi all, just a wee update on my DD.
She is 4.4 now, has a leg and had splint now, managed to fully toilet train her at about 3 and a half, doing amazing at nursery, even done the whole sports day.

She has 1 more year of nursery before starting p1, we're doing loads of work with her 'helping' hand for things like writing and cutting, she gets so frustrated that the paper moves away from her and that she can't hold it to cut. Been given some ideas to help her but she has no control over her R hand so is quite difficult.

Her eating is still hit and miss, she was dropping weight so giving her loads of high fat food.

She is desperate to ride a bike so we bought her a trike, not much joy with it but we will keep persevering, fingers crossed she gets the hang of it over the summer.

Hope everyone is well and looking forward to the school holidays, we are already on ours :)

[whereonthestair]

Hi. My Ds is now 7 just finishing end of year 2. Still can't walk, but increasingly that doesn't matter. Does swimming, riding, drama and dance.

We are however looking for an ed pysch on processing issues if anyone knows one?

[icantbelieveijoined]

Melmo26 can I ask what, specifically, your daughters struggles are with eating? My DS is 16 months and still no where near being weaned. He can eat solid food but has 1-3 bites of anything and then stops. He has 3-4 spoonfuls of chunky baby food and then stops. If he has 200ml of milk in one sitting I feel like I have won the lottery I am that happy. He has mild hemi CP but I can't see why this stops him eating as when he wants to he can. Does your daughter just have limited appetite? DS is under a dietitian and on all sorts of extra calorie supplements but still struggles to put on weight. I just wish I could get him to eat more and enjoy eating x

[melmo26]

icant my DD will just refuse to eat if she doesn't like the look of it, even if she hasn't ate anything for hours. Or if she has ate it before and liked it, she won't/ can't eat anything chewy ie meat, it just seems to be too much work for her.

We seen a SALT for her eating who said it's not that she can't eat food due to gagging or swallow reflex etc it is psychological. We were then referred to a psychologist to help, she asked loads of questions about DD eating and how she reacts and how we react, at the moment we are to give her her food and then completely ignore her, she screams cries throws her plate then won't eat

We have to continue giving high fat food, so she has cheese, cream, oil added to food, she hates any kind of sauce on food or any kind of tomato based food so it's quite hard.

We see her consultant soon to check weight and growth, if she keeps loosing weight then we will have to give her the shakes too.

Who have you seen to help? Have you been referred to SALT to see if there is a reason, I guess he has a really small stomach and needs built up to hold more at a time, just my guess tho.

It's so hard when they won't eat, I feel so helpless, my DD has 3 big sisters who are all good eaters. Ignoring her and just letting her eat what she wants is helping a little but if she doesn't want it she just wont eat. Not saying you should ignore him as my DD is 4.4 so a bit safer to be left with food

Good luck

[icantbelieveijoined]

melmo I agree it does make you feel so helpless. We have seen SALT twice now and he has been discharged but with open access for self referral if we feel we need them again. The lady from SALT was amazing and she said, like your DD, a lot of it will be psychological as he is food averse. We have to just keep plodding on at it. He is on the build up shakes but it's OK to get them on prescription, it's getting him to drink them that's the problem. A few months ago he went on total hunger strike and wouldn't eat and barely drank milk, I begged for the Doctors to consider PEG feeding for him but they wouldn't. In a way I'm pleased they didn't as he is slowly improving but if he could take his calories via a PEG then it would lessen the pressure of trying to get more food in him. Even on all the supplements he only gains about an ounce a week and is just on the 2nd percentile, before we got the supplements he wasn't even on the charts for weight and he looked emancipated. (One lovely health visitor even asked me if I was actually feeding him!

I hope when you see the consultant your DD has gained weight and that feeding becomes easier. It, for me anyway, feels like a lonely position trying to feed a child who doesn't want to eat so you have my full sympathies and admiration because it is a daily battle that not many people understand

[minipie]

Hi everyone, hope you are all well. DD is still doing very well physically but not so well emotionally and behaviourally (though better than last time I posted). She's starting school in Sep and I am worried, she's already tired out by half days at nursery and is horrible exhausted by 1pm.

icant is it possible he has reflux as I just read that is quite common with CP? Might make him reluctant to take much at once?

B1rd did you find a solution to getting tired half way through a walk? We have been using a buggy board for DD1 in that scenario but DD2 will be out of the buggy soon so will need another option...

[leccybill]

Hello - sorry to bring up an old(ish) thread but just wanted to pass on a warning.
You may know of some families who have fundraised to pay for SDR in America and further treatment and physio back at home. It is common (required even?) to use a charitable trust/foundation to handle the funds raised and distribute them as and when.
One of those trusts is the Darren Wright Foundation. It has come to light that many families using this foundation have had trouble with invoices not being paid, cheques bouncing, deadlines not being met, communication being ignored, requests to move their own money away being ignored. To date, the foundation trustees refuse to acknowledge any problems, and refuse to give new timescales for money they hold to be released, and have deleted all complaints or requests for info from their social media pages and/or blocked families.
The thought of any further families suffering at the hands of this foundation is awful. Just wanted to warn people to steer clear and spread the word.
(The police, Action Fraud and the Charities Commission seem uninterested sadly). Thanks x

[leccybill]

Just bumping out of frustration and hopelessness - see post above. Thanks x

[melmo26]

leccybill are you ok?
Has something happened?
Here if you need to talk

[leccybill]

I'm fine thank you melmo, it's kind of you to ask. I turned to mumsnet as a last resort in raising awareness of this rogue charity but it looks like the story has made the press now so hopefully the truth will come out and everybody can gain access to their own money.

[melmo26]

Great it’s made the news.
Awful a charity is doing that to people, knowing that all people are doing is trying to help their child. Awful

[MyMorningHasBroken]

My children do not have CP. I work with SEN and about to start a new role in a special school for PMLD. I think you parents are amazing and have to be so strong. I don't think other parents realise what you go through to help your children.

[Albaba]

Hi I was just wondering if we could get this thread going again? I am just feeling very sad about things at the moment. My dd is 6 and has diplegic cp. She also has a twin who is not affected. I think generally I have accepted things and in the house she doesn't get treated that she is different. She is an independent walker. She had botox last week for the first time in to her right leg as they say that she has tightness in it and are waiting to see if it has any effect. I saw her physio today for the first time since the botox and she was talking about how she thought that she should go back to wearing afos and about how things would worsen as she got older and heavier. The afos make her walk really awkwardly while she seems to manage ok while wearing her piedros. I thought she was doing well going to mainstream school and managing well. She really is a sweet little girl, really enjoys her work and going to school. It was just hard to hear what the physio was saying.

Sometimes things really get to you. I was at their school play this week and she walked in with her ta and you could see her walking differently while the rest of them all skipped in. Also I know several sets of twins all round the same age all perfectly normal. There are girl twins that have just joined a group that they go to and they skip in together and sometimes it just feels so unfair that that has been taken away from me. That's what I should have. Not millions of appointments to go to and an uncertain future. I feel as well that I can see the girls in their class growing independent where I am always like hold my hand, walk with me and she cant do that forever can she?

I done everything right in my pregnancy. I don't smoke or drink and took care of myself and had loads of scans. Yes they were born early but a wee boy we know was in NICU at the same time as them, just over a 1lb weight, now perfectly normal. Not that I would wish anything on him. Just having a bit of a pity party tonight. I don't talk to people in rl about it. I am a bit of a bottler but I know people on here understand were most people in rl don't.