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

BabsUnited Have you tried the ozbozz converta scooters? They go from 3 wheels to 2 and are quite good for helping to get used to the balance. My DD still likes her 3 wheeler toddler scooter which is far too small for her but very solid and helps her with balance! She still finds scooting hard going and changes legs constantly! Is great for building trunk strength though..

The hardest for her were the move and groove ones with the tilting handlebars - really difficult for kids with impaired balance to feel unsteady I think..

Hi Ladies. I was just wondering if anyone has any experience with this. My dd 3 and a twin has cp. I have read up on a link between cp and behavioural problems. I am starting to think her behaviour is more than just being a three year old and is related to her having cp. We have enough to deal with her having cp and I dread her possibly getting a label of maybe autism or adhd too.

For example. We took them to soft play this morning. She usually goes there too on a Tuesday and there is a music and movement session on. So we went today and it wasn't on and she had a complete meltdown screaming and nothing we could do would console her. So we ended up leaving after half an hour. Don't get me wrong my other dd cries too but this seems different like she gets something in to her head and if she doesn't get it she throws a complete tantrum and nothing will calm her down.

An other example we were at physio last week. The room is cordoned off in to two halves. We were in one side and another child in the other. My dd wanted to go over to the other side and the physio and I explained that she couldn't. She kept insisting on going over and when not allowed cried inconsolably and wouldn't do any of her physio work.

It just seems that it is happening more often. I am just so frustrated with her. After this mornings incident I know she is my dd but I didn't even like her.

In other ways she is very clever, knows her numbers, alphabet, nursery rhymes etc and she takes things in and remembers them. I know she doesn't have issues intellectually but I think she gets frustrated as she can't do as much physically as her sister and wonder if this is a part of things? Her MRI said that she had white matter loss of prematurity so maybe she can't help being like this.

Its just frustrating though. Nobody else's children seem to behave like this. Sometimes I feel like a bit of a freak with the child who doesn't walk properly and is badly behaved. It just makes things so difficult as a family as a whole to go places and do things. Anyone any experience?

Hi, my ds is 5 in a couple of weeks, and he definitely has phases where he is like this, and more tantrummy than his peers. In his case it is definitely frustration/envy as he wants to do things he can't. He is also bright, but quirky, but for what it is worth 1, it got a lot better when he went to school, and he could concentrate on age appropriate things which were not physical. He's average at reading for the moment, writing is poor due to cp, but last ot assessment had him scoring very highly for social skills/ responsibility etc. it was weird. It is also made worse when he is tired/ hungry. I can't say that your dd is the same but she is still little, and ds has sort of grown out of this but later. I would also add that premature children develop these types of skills later, and often asd/adhd is even harder to diagnose early with some ex prems as the developmental track stays spiky. However if there is something else too, it will be ok, one way or another......

Hi everyone. I hope you don't mind me hijacking to ask advice. My 9m old daughter has a very rare form of epilepsy that often causes brain damage/ developmental delay, so not CP but leading to similar issues that your children face. She was only diagnosed 5 weeks ago after starting seizures suddenly but we'd noticed delays from about 2 months ago. She can't sit independently, has lost her rolling (common for children to lose previous skills whilst they are having spasms) and is v poor at self feeding. It's been crisis management up to now, but we're starting to look in to what help we can get with supporting her development. I'd really appreciate a steer on what we might be entitled to and timescales for getting help. We are seeing her consultant this week but need to know what to ask. Thanks!

Hi Bakingtins . I'm no expert, but if you've not had an MRI scan, you could ask about whether this would be of value in your DD circumstances. We had an EEG to check for epilepsy too.

We got referrals from the consultant for:

1. Birth to Five service (not all regions have this but you may have something similar - they're the pre-school education folks); They provided a support chair in DD's nursery setting.

1. Portage (learning through play delivered at home and had a swimming group that we enjoyed). Pronounced as spelt: 'port' as in the drink, and 'age' as in '21 again' lol. I pronounced it wrong for ages until someone told me!

1. Physiotherapy (help with gross motor skills. They can help with the rolling over issues and will check development of core strength, hip alignment etc);

1. Occupational Therapy (OT) (help with fine motor skills and enabling your DD's environment - so we have an adapted highchair from them and have had various seating solutions, handrails etc. They can help with your feeding issues.)

1. Opthamology - DD has an eye squint, so this one might not be relevant for you. It's an eye doctor.

Timescales wise has been fairly quick for therapies, all within 2-3 weeks. However waiting list for wheelchair services was 9 months . I'd guess waiting times will vary from region to region depending where their pinch points are. Good luck with the consultant appointment - ours has been very friendly and worthwhile.

Thank you everyday

She's had a MRI and several EEGs, plus a gazillion blood and urine tests, but no underlying cause found as yet, which is frustrating but a good thing as all the causes are bad, the children that are idiopathic do best in the long run.
We are due to see an ophthalmologist at some point to check her retinas, but will ask about the other services.

Hello bakingtins welcome. everyday has given you a really good list of inputs you can receive. We have had all of the above but also SPeech and language.
Portage has been invaluable, you can self refer, so do not need a doctor to do this for you. Really recommend this, there is often a waiting list so the earlier you put your name down the sooner you will be allocated a play worker.

Additionally to those provided by the NHS we do Bowen and MAES therapy privately. Dd is doing amazingly well.
Don't be fobbed off with the 'wait and see line' either that they may give you. I always believed that we act now and if there turns out to be no problem then great, but the more you can give in the earlier days the better.

Waves to Summer

We do Bowen privately too, and have seen an exponential improvement in DD's balance and movement. The physio even asked about what we were doing, as the improvement was so effective and prominent she noticed it.

I'm not an easy-believer in holistic / complimentary medicine etc and while I don't fully understand how Bowen works, I'm a firm believer that it alone has increased DD opportunities through increased mobility. I see a softening in DD's arms (where her spasticity is most prominent) straight after the treatment. As she is a little older now (3.5) she is able to tell us that she enjoys the treatment and it feels good.

Our practitioner does not charge for children, so we have got free treatment (20 min appt) every 2 weeks for the past 18 months. That's not a scam; they have nothing to gain. I'm not sure all practitioners offer this though.

Albaba We have had inconsolable crying too. And frustration tantrums.

I had to collect her from nursery setting at school one day, as the teachers were so worried about how upset she was - breaking her heart (and those around her) because she had no mittens with her . It took me an hour at home with cuddles to calm her down, she had worked herself into such a state :(

It's happening more often too, because of minor inconveniences :(

Thank you Everyday. I have just had a particularly difficult weekend with her. The soft play incident on Saturday then on Sunday we took them to a shopping centre which was a complete disaster. Her wanting to get out of the trolley and walk when her walking is poor. Then people looking at us with the funny walking child. Wanting to go to the toilet and wash her hands, not wanting to come out of the toilet, wanting to go on rides and not wanting to get of them. It resulted again in a complete meltdown and us having to cut short our shopping trip and carry a screaming child out as fast as we could.

I sat in the car crying on the way home and last night I poured my heart out to my dh about how I was finding it really hard to cope with her. The physical issues are hard enough but now the tantrums over minor things mean I don't even want to take her out and do things with her as I'm afraid of her making a scene.

I still feel quite teary today. I was at her physio session this morning which we have now been going to for two flipping years! I didn't even attempt to make conversation or interact because I thought if anyone said anything to me the tears would appear. It's just so hard seeing her struggle to do seemingly simple things like climbing and balance.

Don't get me wrong at times she can be lovely but it is a path in life I wasn't expecting to take and it is constant hard work which most people in rl don't understand.

Anyway back to work tomorrow for a break and to keep myself sane!

Albaba I think my DD wants to exercise some control of her environment. I have exactly the same issues:

Wanting out of the trolley and to walk. So I let her. I just have to factor a (much) longer trip to the shop than I'd normally do. Then engage her in 'finding the milk' etc and helping to put things in the basket. She hates being forced to be passive, so although it's more work to engage her in the activity and give her a little autonomy, it works. People do clock that she has a gait, but usually its the 'good on you girl' type looks she gets as she determinedly toddles round the shop. I consider that gait is showing the world what a determined little warrior I have .

Oh goodness the whole toilet and hand washing extravaganza. Right with this one I chivvy along by making the next activity sound so blooming brilliant, I get her out the bathroom in a reasonable timescale. If the next activity could involve her making a decision or doing a (grown up) task for me, this is the most motivating! Carrying her out the toilet against her will is the worst thing I could do. I have to make her think it's her decision.

Yip, doesn't want to leave the ride. Either play the 'taking turns' card and encouraging her to let another (waiting) child to have a turn, or her to 'help' the next child onto the ride, or do the 'exciting next activity' talk, encouraging her to make her own decision to part from the ride. Again, meltdown if I just lift her away.

What doesn't work for us are: not allowing her to exercise personal freedoms and choices (so I have to enable her to be out the trolley etc); me being task-focussed and not taking the time to engage her at her level (so me making everyday tasks interesting for her and allow her to participate in them with me).

It is hard work though. Some might think this looks like pandering, but to me it's a win-win as be both get what we want. You do need to schedule more time for any activity to make this happen. I also remember DD tires quickly, so her brain wants to do more than the body is capable of = frustration. OK at this point, the coffee shop for a rest and refreshment (caffeine + cake for you!) is your best friend.

Have you thought about getting some support in RL? Counselling might be helpful just to have someone listen to you, and to allow you to talk through all your feelings. A dedicated piece of you-time that might be helpful. I think your GP could refer if that's something you might find worthwhile. Stay with us on here too xx

Thanks summer
We saw the consultant today and he was very much 'wait and see' on the development stuff, but he did talk about referral to community paediatrics if we are not seeing progress on that score by her 1st birthday. He is referring us to an epilepsy nurse and it looks like she could refer us to Portage etc (seems to need a HP referral but nurse/HV etc can refer in our area) so I will pursue that.
thanks both for taking the time to reply

Glad to have helped bake, certainly pursue portage and if you feel dd would benefit from any alternative therapies go for it, the NHS will never promote anything other than NHS!

Hi everyday we love Bowen too, our private physio has noticed such a difference in it, that she has enrolled herself in a training course

Albaba - - I love work too, a well earned break , sorry to read you are having a tough time. I think largely the tantrums are an age thing, boy do we have them and some BIG public ones too!

I guess in your dd's eyes she can walk, she probably has no awareness that she walks differently from anyone else, so wanting to get out of the trolley seems like the most obvious thing to do. For example, My DD cannot stand alone, let alone walk, but holding her hands she can, so as far as she is concerned that is how she walks, she will tell me "I walk mummy" so that is what we do. We get looks you describe and stares but to those people, I now, feel strong enough, to think f* you, yes my dd can't walk, but truth is it is a miricle she can do what she can do! It isn't the road we chose, you are right, its bloody tough, I found counselling helped me massively and also anti-depressants, something I never ever in my life thought I would need, but they gave me a thicker skin and really helped me in coming to terms with this whole situation. Keep posting and talking, I really understand.

I think we went over to community paediatrics at about 12 months too. We saw the consultant there every 6 months; now annually. I found the community paediatrics consultant is more engaged with the various therapy services and this is who did all our referrals, not the hospital consultant.

Could someone sum up what the differences are between Bowen and MAES therapy? I’ve had a look online but descriptions of what they actually do sound quite vague. This conversation has reminded me that we still have DS’s DLA to spend and our private physio has just gone on mat leave, so it would be good to investigate another sort of therapy. And it sounds like some of you have had good results from Bowen? Thanks

Sorry I don't know what MAES is either.

Hi everyone and a hi to all the new :)

It been a while since I posted, there hasn't been much going on here until the last few weeks.
We met dd's surgeon a few weeks ago, it was am appointment just to meet her really and so she could see dd. Anyway she asked us to go to xray for dd's hips. We will get the results on the 13th march when we go for a CPIPS appointment.
At this one she wants to do a measurement of dds legs, as her right leg is noticeably shorter than the left, same as muscle tone etc.
Recently dds foot is turning out and on her toes, thinking she will need splints after all, and they want to have a cobbler make her shoes thicker on her right foot to try and make her walking more even.
Everything seems to have come at once.

On the bright side we got dds day hand splint. Had to have a new one made as original got lost in post. She tolerates it for a good few hours, especially with the tuby (sp) grip we put over it :)

Hi Melmo Nice to see you again; I too go for periods of not posting for a while. Just depends what's happening in life really .

Glad the hand splint is going well . Is it the same type as the pic I posted? We do the hip x-ray as well on an annual basis now. Sorry to hear of the toe walking, hopefully the splints will be a big help. Can I ask for a reminder of your DD's age please? Ours is 3.5 and she's being watched for muscle tightening/toe walking etc as she's going through a growth spurt. Apparently the muscle lengthening might not keep up with the bone growth and that's when the tightening kicks in. She's doing fine at the moment though. Nice to see you again :)

I have a conundrum. I've just applied for a Tomcat trike so we're in the process of someone coming out to measure DD up and take note of her needs, then they'll give us a quote.

I know there are lots of charities out there who'll help with the cost, but I'm reluctant to approach them as we could save up or pay in instalments. I'm very cognisant that we're not a 'struggling' family and therefore I wouldn't want to take from charity if it meant others would lose out. Does anyone have any experience - do the charities 'means-test' your circumstances etc and happy to hear what others would or have done.

DD gets DLA and I get CA, but we don't qualify (rightly) for any other benefits. I've used the DLA money recently to buy handrails, steps, wedge cushion etc for DD from an online disability products retailer, rather than wait or approach the OT/physio for these, as I feel we have had loads of support (NHS have been great). Happy for your thoughts x

Hi everyday thanks for answering and glad to see you too :)

DD will be 2 next month. The day splint is the exact same as yours, she managed to take it off this morning and bin it

How did your dd cope with the xray? I had to literally pin mine down. OT signed dd off as she is so reluctant when OT goes near her, she stiffens when any of them go near her. I'm dreading the CPIPS app, we are most likely going to have to pin her down again :(

Did your daughter get used to the physio,ot, consultant etc touching her? I'm hoping its an age thing but she has never liked it and throws herself to the floor crying as soon as she sees any of them. She knows who they are, as its been the same ones for over a year.

We took dd swimming and she hated It :)
We are waiting on an app for ( ompth something) eye check as she is really scared of being up high. She won't go near the top of the stairs

Hi Melmo

lol at 'binning it' :) :) I like her style :)

DD2 coped fine with the x-ray. However, she is mostly compliant across the board (with the exception of massive tantrums recently - see my posts to Albaba lol). She is happy to be compliant for 'professionals' probably because they ask her to do things in a light, cajoling way, and never just manhandle her without her 'permission'. So they get her 'on-side' straightaway. There is always the expected promise of a sticker afterwards as well lol. (Do not understate the power of the sticker lol).

I use the names of the professionals with her so say, 'ooh Karen (whoever) is coming to see you today to see your fantastic walking' etc. So we get all excited about the 'visitor' and she has something to tell them or show them that she's proud of (new shoes, a drawing - anything that encourages the meeting). We're a bit of a show-off, so I play to that!

If your DD doesn't like being touched, and doesn't like swimming, could the 2 be related? Maybe she doesn't like the feel of the water? I think there's a condition that relates to not liking a sensation or touch on the skin. Also, swimming pools smell funny (chlorine) and sound strange and noisy because of the echo in most pools. We go to a small pool in the gym I'm a member of. We're fine in there, but when I took DD2 to the bigger Leisure Centre pool (open to the public) she was really clingy and didn't like it - it was the noise and the splashing etc. Is there a smaller/quieter pool you could try? We go during the day when there are no school age kids around so it's a bit quieter.

We go to the opthamologist (sp) too. Eye doctor for DD's squint. We see them every 6 months for checks. It's a bit like going to the optician, but be prepared for your DD getting a drop in each eye to make her pupil bigger so the doctor can see in the eye easier. It doesn't hurt or anything and my DD hardly flinches, but yours might not like the personal intrusion - just giving you a heads-up .

Hi hectic few days here. I hate Fri and Sat. So much to do with not alot of time.

Anyway, thanks for the tip about talking dd through her apps first, telling her who she is seeing and what for.

The pool we went to was at dh gym. There wasn't anyone else there, we had dd3 (3) with us too. We walked out changing room door to pool side, as soon as the door opened she panicked, got to have a search about the touch thing as she hates her nappy being changed with wet wipes. Loves the bath now tho!

Thank you for the heads up about the eye drops, might double check dh can get the day off.

Iv also stuck a wee stitch in dds splint so she can't pull it off and bin it again.

Also meant to say everyday I don't know anything about applying for things I didn't even know you could

Maybe someone with an older lo will be along with some idea sorry

Melmo you hate Fri & Sat. Tuesday's are my nemesis! Frickin stupid day with far too much to do x Good idea with the stitch in the splint :)

Does anyone have an idea for a birthday present for my dd who will be 2 in 2 weeks time?

We are completely stuck for ideas. DD is our fourth dd so she has everything you can think of, ride on cars, dolls, buggys etc

She doesn't use her right hand at all so two handed toys are no good for her.

Help :)