Parents of young children with cerebral palsy-A few questions.

[Squiggers]

Hi everyone,

I've never posted on here before. My 3 year old daughter has very recently been diagnosed with Cerebral Palsy. I've found the last few weeks since the diagnosis quite hard. I don't know why I'm finding it difficult - she's the same amazing little girl. The label doesn't change anything, or make her anything she's not. Anyway - I'm currently not telling anybody outside of my immediate family the diagnosis. I feel there is no point as people can't see there is anything different about her. However, I'm wondering if it's odd of me to not tell people. I just don't want people to treat her differently. What do you do if your child has CP but it's not immediately obvious?

Also my DD gets very emotional and upset when she's tired. Our consultant mentioned CP children get tired alot quicker than other children. Is this true? I'm not sure what is just the expected behaviour of a 3 year old, and what's CP.

Sorry if I've waffled, or worded anything inappropriately.

I'd love to hear from anybody else with a toddler with cerebral palsy. I feel quite isolated and ignorant at the moment.

Thanks for reading.

Hi there. We all struggle with diagnosis though sometimes people find it actually helps to know.

My son is three and has cp but he can't walk or talk so I think your dd is probably quite mildly affected, not that this will make it easier for you. I have a friend who has a dd with mild cp and I'm sure she gets very tired. I'm guessing it's because ordinary tasks are harder.

Please don't worry about how you feel - all of us here are pretty much an emotional mess from time to time but usually never alone in what we're feeling.

Hi Sookie,

Thanks so much for reading and replying. You say you have a friend with a child with mild CP. Are you a member of a help group or anything like that where you meet other parents of children with CP? Where do you go for advice?

Thanks for your words of support.

Hi Sqiggers,
My DD is also 3 and hasn't been dx officially yet but is also likely to have mild CP. She does get tired and has recently started having awful tantrums - could well be perfectly normal given her age!

Most people who know her are aware she has a few physical problems but strangers can be surprised if I mention CP. We haven't told many people she gets DLA as I think it could potentially change the way they treat her.

My DD has mixed muscle tone and so varies day to day. Some days she is very tired and we rely a lot on the pushchair, others she is on the go all day!

Hi 1percentawake. Thanks for responding. If you don't mind me asking, what are your DD's physical problems? Was she a late walker?
Regarding the mixed muscle tone, is that on one side? Will you be getting a brain scan to diagnose officially? And sorry for being nosy, but does she receive DLA then? We still haven't applied for that despite a formal diagnosis. I didn't realise she might be considered for this.
It's so hard to telll the difference between what's just being a toddler and what's CP!

DD already had an MRI so we know she has damage. They've been a bit cautious to dx officially despite this - I think is often the case with mild CP.

She is affected all 4 limbs and trunk and walked just before she was 2. We only applied for DLA recently because she still falls over a lot. Is definitely worth applying for it Squiggers - helps with buying extra bits and pieces that she needs.

Does your DD have physio/OT etc?

We'll definitely look into applying for DLA. Yes she sees a physio about once a month. She has orthotic shoes and a night boot that she has been given in the last few weeks. She is also more likely to fall over than her peers. Does your DD have to wear a night boot? My DD hates hers and it's a battle to get it on and through the night. It's enormous and I can completely see why she hates it!

Ps how long did your DLA application take to process?

Sounds like you would have a strong case - the Cerebra guide is really helpful as the application form is horrid. I think we waited 3 months for decision.

www.cerebra.org.uk/Resources/Cerebra/Parent%20Support/dla_guide_nov07.pdf

It's hard to have battles over footwear
DD doesn't have any supports but has to wear certain types of shoes - trainers are best funnily enough but she always wants the pretty girly shoes with no support!

Wow that pack looks great - thanks very much.

DD also loves pretty shoes. She's a very sweet little thing though, and always surprises ,e with her adaptability to new things that I'm not sure she'll like.

Anyway - great to chat on here. I'll be back on here again now I know you're around. bed for me as up in night still with DS. Yawn.

Hi. My 2 yr old GS has CP, he is affected in all four limbs but if fairly mild. When carried he just looks like a NT, and we haven't yet had the courage to say to people we meet casually that he has CP. We'd be absolutely devestated if their look of interest in him turns to one of pity! Family are fine with it. He has all the services possible and we work on his physical movements usually daily. Your DD sounds pretty mild if she has only recently been diagnosed. It really isn't too bad in most cases of CP and the treatments are often very successful, but the initial diagnosis and shock take a long time to get over. The paed said that CP children use 20% more energy that NT so they need extra calories. We dont worry about low fat options etc. its full fat the lot .

Hi WeakandMilky. Thanks for responding. I know exactly what you mean about the look turning to one of pity - that's what I'm afraid of! I don't want anyone to feel sorry for DD or say 'poor DD'. I think until I've got used to the fact that people might well say this, i wont be telling many.

Yes my DD must be pretty mild. Basically she didn't walk until about 21 months, then was diagnosed as an idiopathic toe walker. We were later advised to have a brain scan, as it looked like her right arm was also affected. Thus the diagnosis was made. Her arm and hand are stiff, but she still uses them well. Her right foot is more of a problem. She is constantlyimproving, but struggles to run and jump etc. I know she is very very lucky though to be as mobile as she is.

That's very useful about the extra energy they use and the extra calories. I'll remember that!

Hi Squig. Try www.hemihelp.org.uk/

You might find some useful info on that for your DD.

DGS seems to be a very wobbly boy and lacks balance and coordination so not a hemi I think. CP is very strange and no two children are alike, but as time goes on and with understanding their behaviour and movements seem to be more understandable. If you cannot find a book specifically for hemi CP this book www.amazon.co.uk/Teaching-Children-Cerebral-Movement-Disorders/dp/1890627720/ref=sr_1_1?ie=UTF8&qid=1288042419&sr=1-1-spell

is brilliant for all CP and has lots of easy to follow photos to maximise your childs potential using accepted physiotherapy methods, and will certainly help with hemi as well.

Hello Squiggers

Our ds2 has severe cp affecting all 4 limbs) and is 4 in December. I don't think you'd necessarily know from just seeing him in the pushchair though. It's just when he doesn't hop out and start running around like his NT peers. I guess that's slightly different to your situation though.

I tend to be quite matter of fact about it and explain that he has cp to anyone we meet quite early on to get it out of the way. Most people don't have a clue what that means. It's only when I explain he can't sit up straight, is still learning to crawl (started bunny hopping last September) and can't stand / walk that the penny drops.

He is a lovely boy though and most people say this after I've told them (as if cp would turn him into a monster).

Dh has said he used to really worry about having a disabled child before we had one and now couldn't give a stuff about it as you just get on with it.

I've armed myself with as much information as possible. We've also got the full gamut of private therapists and am convinced that I know my son best and don't tolerate too much nonsense from NHS and school. I think it's very much down to the parents to fight their child's corner and prevent them from being sidelined because of their problems.

Ds still gets quite tired, though stopped napping at 2.5 yrs. Have learnt to pace the day with down-time in the pushchair mornings (on way to town and back for example) and afternoons (walks) to give him some time out. Is typical boy and very active.

Hi,
I am in a hurry, but I just wanted to say that my 3.3 dd had brain trauma at birth therefore we knew something could happen. She has a sort of dx, mild hemiplagia. She is very active and walked at 17 months, but has gdd. So language is behind, fine motricity, she wears glasses.
One if the things we find the hardest is her behavior, she is like a teenager on a sugar rush sometimes! I am hoping she will outgrow it, or that her language will help her communicate more thus be less frustrated.

Hope you have all the help you need

dd2 is 7 now, and has what would now be described as reasonably mild athetoid cp (she was dx spastic quad originally and we were told she probably would not walk or talk). she does both, attends ballet lessons, and is learning to ski.

her whole body is affected though, so although she can do pretty much everything, she does it in her own way. she had lots of feeding problems and was ng fed to start with.

she had lots of interventions before school, and has blocks of physio and ot now. she's been discharged from slt. oh, and she's scarily brainy lol. she had squint surgery this summer and has worn glasses since teeny tiny. was awarded high rate dla at 6mos, went down to middle rate a while ago.

like the other poster - we are very matter of fact and get the cp thing out of the way. tbh, it's pretty obvious when she's running around or talking, and i'd rather everyone know i'm not embarassed by it and neither should they be - and i don't want my daughter growing up thinking i'm ashamed of her disability, or that there's any reason she needs to hide it. over the years it has been obvious that people are wondering what's 'wrong' with her, and don't want to ask, so i find it best to be a bit up front.

she does everything, goes to brownie camp, whatever. but she does need some extra help, so it's important that her friend's mums or whoever know how to help her. otherwise they are too worried to invite her to tea, or on a playdate.

Hi again everyone,

Thanks somuch for posting yomellamoHelly, wasunderthirthy and nickoftime. You have all helped no end. It's good to hear from other people in a similar boat.

I agree with you nickoftime, in that I would never want my daughter to think that her disabilty has been hidden, or kept a secret, or that it's something to be ashamed of. You've said some very helpful things.

wasunderthirthy - my DD can ber very very excitable too! The littlest thing can cause her to totally freak out! This may be just the behaviour of a 3 year old though, as she doesn't seem too different to her friends inthis.

The night boot still isn't going down very well. She lets us put it on her now with no fuss, but wakes crying from 9 pm onwards and we eventually take it off around 11 as she needs sleep. Any tips on this? At the minute we're not too bothered it's not onall night, as 4 hours and putting it on with no fuss is a start and she's only had it 2 weeks.

Hope all you and your lovely little ones are having a fun half term!

Hiya - my ds is 2.8 and was diagnosed with mild hemiplegic cp at 6months and has had physio ever since.

He cannot walk unaided, but he can tear around in his walking frame (Rifton small pacer, with a waistband due to him not using right hand to hold on)altohugh he is rubbish at steering.

I take him out and about in his frame, to the library and shops as he can walk quite far in it. People always look and smile and comment that they haven't seen anything like that before and I hear regularly from the physio and portage worker that most parents don't really take their kids out in these walkers. My attitude is like well this is ds, he's disabled, and cute, and clever.

He doesn't tire easily at all - in fact he is a non stop machine that even moves around in his bed! He dropped naps early and only grabs a quick daytime sleep if really shattered. Always on the go, indoors he commando crawls at great speed generally dragging some toy or other with him.

He does startle/panic easily and doesn't like big noisy things - I feel he knows he can't turn and run if he needs to.

He has about a 9 month delay in expressive language but is coming on nicely. We can't find anything else wrong despite the nearly unstoppable neonatal seizures and warnings about epilepsy and blindness.

Can you tell how proud I am of my little man

There are some pics on my profile of ds in his walker. They are from the spring.

Oh and he combines mainstream nursery and special school nursery and uses his walker in both places.

Hi I've just joined because I really feel for you and totally understand how you are feeling. My son was diagnosed at 22 months. with CP and I had no knowledge. We were told he may not walk or talk..... He is 12 now .... He didn't start talkin till he was nearly 5, he was always wobbly unstable on his feet.got very tired and I found feeding him little and often sometimes pureeing his food helped to build his energy . Some professionals did not believe he was cognitively all there!! And I was scared that everyone else knew more about my son than me ( as his mum) .... Well 10 years on he has had speech therapy physic and O T. attended the child development units and been to nursery , mainstream primary and is currently in mainstream secondary..... I look back and realize all the help had been a crutch of support for my son and us . I began to slowly tell people my son had Cerebral palsy when he was nearly 3 then felt I had to treat it as our normal and ask if they knew what it meant and then explained it was a stroke which happened before or during his birth. What is more important is he is a happy lad with a loving family and he's in top sets for science and history . It's so important to look beyond the label and realise your daughter will achieve and each milestone will be 100 times more significant and very emotional .... You know your daughter best and all the love and care she gets from you will be the backbone of her development x

Just popping in to say 'hi' - my dd is 4 and has just started mainstream school full-time. She walks independently sometimes or uses her walking frame and wheelchair for any distance. She does ballet and has been in shows and competitions. She has CP and is affected in both legs and arms with her right side being much more affected than her leg. I would say that the over--riding concern in the medical profession is to get children with CP moving and walking if they can but as a parent it is the behaviour stuff that is hardest to deal with. Dd is a little love and is mcuh better than she was - the tantrums and screaming were awful for years.

I would second the Cerebra DLA info - follow it to the letter and it has been successful for us two times so far. Hemihelp has very good info and a nice message board. At some point you might want to look at Conductive Education - not going to influence you either way as you'll get bomb-barded with opinions but something to look into at some point

Just found out today my 3 year old has mixed up still kinda in shock.but I want to hit this head on he doesn't walk or talk but can army crawl.his little butt across the house anything I can do to work on his walking and talking he's already in lots of therepy and I been reading about stem cells money isn't a issue I will pay whatever it takes let me know and thanks

I meant mixed CP

HI gonzo,
This thread is 8 years old (I posted on it as nickoftime and these 3yos are all 11yos now.) You might find it more helpful to start your own thread if you are specifically interested in finding parents of pre-schoolers with cp.
My dd wasn't walking or talking at 3, but by 8 was pretty independent. Most families with kids with cp find that their physio is the most valuable. I know our consultant told me that when dd was a newborn.

Good luck with your hunt - and be kind to yourself. Things do get easier xx

(At three dd had a walking frame btw, so she was walking and running around with her peers - she couldn't stand independently at the time. We were using some makaton for comms, but due to her atrocious fine motor skills, it wasn't much use! By 7 she had been discharged from SLT and was fully verbal. The years between 3 and 6 saw the biggest changes in function).

Hi OP I just wanted to leave a message of support. I’m an adult with CP myself and while it has affected my life in some ways, life is what you make it. I’ve been lucky enough to only be affected in my legs. I attended mainstream schooling and went on to higher education. I am now a SAHP and a carer and live as full a life as I possibly can. Good luck

Hi,
My daughter was diagnoses with pending mile CP at the stat of the year. She had a difficult birth and a brain injury confirmed with an MRI scan.

Her intellect, sight, hearing, fine motor skills and cognitive skills are not affected at the moment. It is her gross motor skills that appear problematic.

She is near 13 months and can only sit for a few minutes before she topples over. She will happily do tummy time and roll and loves to stand on her legs and bounce. She loves books and is very noisy. She's cheeky and amazing.

It's been hard though waiting for her to sit and crawl. I feel like we've been monitored from the moment she was born. I know we will get her where she needs to be as there is no reason she can't go to mainstream school.

She is receiving physical therapy to help strengthen her trunk. It is believed that if and when her core is stronger everything else will come together. Like a lot of other people I worry about how other people, including nursery, will treat her once I tell them she has CP.

Her dad and I are so proud of her. I know she will be whatever she wants to be in the future and an advocate for other people with disabilities but right now I feel like the world has crashed down on us a little and that I might need to fight her corner for the foreseeable future to ensure she gets the right support and that people do not define her by her physical delays.

Hearing from other parents or people with CP would be very helpful to me as I do feel isolated. It's been a tough start to 2019.