Parents Of Children With Hemiplegia/Mild Cerebral Palsy- Please Help

[chinchi]

DS was born 10 weeks premature and also had a small bleed on the right side of his brain. We first noticed when he was 9 months old that he favoured his right arm over his left. He kept his fist clenched most of the time, and could not straighten the middle finger on his left arm. The consultant mentioned CP, but I dismissed it at the time as did not want to believe that DS had a big problem. We were referred for physio, and thankfully over the summer, he learnt to use his left arm more, and now you can hardly tell he ever had a problem.

The problem now lies with his left leg. He is 17 months old, and has been cruising for a couple of months, yet has trouble putting his feet flat, much more preferring to go on his tiptoes. We were referred for more physio, and although he can now put his right foot flat when he wants, he has lots of stiffness in his left leg, and will only cruise around on his tiptoes. He was given AFO splints, but his push is that strong, that he is able to push out of the left splint, and so it has been decided that he will have serial casting done to see if that helps.

I have noticed that he may have a speech delay. Although he makes noises and babbles in his own language, he cannot yet say any recognisable words. We dont see the consultant again until March. The HV said it is nothing to worry about, but I feel it is. This is eating away at me so much.

Im sorry for the long essay, just this is eating at me so much. I feel Im looking for answers that I cant find, but it helps to talk to others who have gone through similar circumstances.

For thos of you whose children are or have gone through something similar, are they able to walk? If so, at what age did they start? Do you know of any groups/organisations worth contacting? What help was available to you and your child?

hiya chinchi.

my DD who is almost 5 has left sided hemi,they originally said hemiplegia but have now downgraded it to hemiparesis because it is so mild.

she had problems with her hand,definately preferring her right over her left,she would reach over with her right to pick up things that were nearer her left, she didnt start walking until she was over 2 and she used to drag herself across the floor with her left leg dragging behind.

i noticed something was wrong and it was my HV who dismissed it as me being a neurotic mother,but i insisted and asked my GP to refer her to a paed,i also noticed her speech was affected-again there was "nothing wrong" but i asked for a referral to the special needs HV and she said yes there was and she referred her for speech therapy.

DONT take any notice of anyone who tells you that you are worrying unecessarily,you are his mother and you know him best,if your HV wont listen you can self refer to SALT.

DD has been wearing peidro boots since she was one,they have helped her enormously,you wouldnt know she had it now, but she gets very tired easily and then she starts limping and we have a wheelchair cos she can only walk 5-10 mins max and then refuses to walk.

ask any questions you like and if i can help i will,i understand what a worrying time it can be and there are other mums on here with children with hemi.

HTH

Thanks so much for your reply jenk.

Without sounding ignorant, what is SALT? I would certainly feel better knowing I am doing something to help rather than sitting back and hoping everything will be ok! DH is Turkish, and so we are using both languages at home. DS certainly understands what we are saying to him, just isnt yet able to let us know what he wants!

DS certainly wants to walk from what we can tell- he is forever clambering over the furniture, pulling up and holding onto his sisters' moses basket, yet just doesnt have the ability to walk, and it breaks my heart knowing he wants it so much!

I feel guilty as I have a 6 week old DD, and I cant spend as much time helping DS as I would like. That in itself is beating me up no end

Sorry to but in SALT - speech and language therapist.#
You can self-refer.
There are a couple of SALTS on here. Start a new thread titled SALTS HELP! if you want. They always give exellnt advice and support.

HI Chinchi
My ds2 was born at 28 wks. He is 6 now & ahs a dx of mild CP, ASD & learning difficulties.

He is at mainstream school, can run around (although wobbly) but does tire very easily. He wears DAFO's on both legs & we use a wheelchair for distance.

Your ds is still very young & ds2's paed certainly encouraged us to adjust his age allowing for the prematurity until he was 2 yrs, some do take longer to make up that pre term gap.

I would however echo the others & if you are concerned request a SALT appointment. In fact it may well be benificial for you & your ds to have a multidisciplinary assessment. That way all the experts (SALT, physio, occupational therapist, paed) can all get their heads together & come up with a plan for therapy & support if they & you feel he would benifit.
Occupational therpay for my ds was/is fantastic.
Ask your HV for any local Special needs pre school groups it is the ideal place to go & chat to other parents going through similar & also can be a great source of advice & info.
Also try CEREBRA they have some helpful info.

Have you applied for DLA?? It can help with extra costs etc (eg petrol for appointments)

Thankyou so much for all the great help. Will look into contacting SALT.

We dont have an occupational therapist. I was just wondering what they would be able to provide for DS?

With regard to DLA, I looked into applying, but Im worried we weould be turned down as I guess some other 17 month old children are not able to walk- what would make DS' circumstances different? How would I be able to explain that he's not walking because because he wont, but because he cant? Do I have to show that he needs extra care from his parents?

I hope I dont soud ignorant/silly with these questions just aas you can appreciate, its all new to me!

dd2 was born term 9lbs but very poorly (5 weeks in scbu) and she was labelled developmental delay until just shy of two, when she was given a spastic quad cp dx.
she used a standing frame from 12 months, a walking frame from 18 months, and walks unaided mostly (is a pt wc user for distance and speed) at 5. we've had physio and slt from birth, and OT kicked in seriously at about 2 1/2, 3, to promote fine motor skills. at 18 months it was felt unlikely she would be verbal due to her oromotor problems, and so we were advised to start makaton. some time past 3 she decided that speech was a better alternative and is now completely verbal and has dropped signing.
all this was with really great therapy back-up, and she is now at mainstream school, with some support, but essentially doing exactly the same as her peers (with the jury still out on pencil control v keyboard, i might add ).
he sounds like he's doing really well, but might need a little more help along the way. usually if delays are thought to be significant, the community paed will arrange for a multi-disciplinary assessment and put everything in place from there - may be you could explain your concerns and request this?

Have a look at this site
It really helped me understand who was who and what help was available.
As to DLA - claim it. There are 2 components to it 'care' and 'mobility'. the mobility bit doesn't kick in till the child is 3, but the care component can be claimed from 3 months old.

OT, I would guess could be benificial to your ds. They are very good at offering advice on fine motor skills & things like using both hands & making sure you ds is sitting in the best position to be able to use both hands well.
They also assess things like visual perception & identify any difficulties your ds may have. These can be easily overlooked if a child is too young to tell you1

Most of all for DS2 he attended a weekly pre school OT group which helped his confidence immensly & helped prepare him for school.
Your ds is maybe too young & maybe not need OT in put at all, but the waiting lists can sometimes be long & it is better to get on a list & cancel if not needed.

As for DLA, yes apply. They will awar dif they feel your ds requires more care than the average child of the same age.
Things like Pyhsio exercises & certainly casting are going to take uop more time than average.
Your paed & physio or GP will normally support an application.
CEREBRA offer advice on completing the forms.. or of course Mumsnet

Thankyou so much for all your kind words of support and advice.

I was fobbed off again yesterday by the HV regarding DS's speech, and unfortunately the local hospital says we must be referred to SALT as they dont accept self referrals

Ive requested a form for DLA, so hopefully that will be here soon.

Im taking DS to orthotics this afternoon as they physio requested non-slip soles to be put on his AFOs. Hopefully she will give us a start date for the serial casting too.

Im finding it impossible for DS to keep his left shoe on. It must have dropped off at least 3 times this morning as his heel wont sit in it properly- I think because of how his foot is constantly at an angle with him being on his tiptoes.

Hopefully will have some more answers from the physio this afternoon!

sounds a naff I know, but when ds is indoors can you tie his shoe on?
Take the in sole ou so his foot is sitting down in the shoe as far as possible & then tie over the top of his foot & under the shoe.
DS2 had a pair of piedro boots with a heel retaining strap before he had splints & they were actually very good at keepng his heel down.
He did manage to tip toe by bending his knees in stead but the heel stayed flat in the boot.

just having a little chuckle at anonandlikeit's ds2. dd2 does that in her piedros too

buy the makaton nursery rhymes dvd with dave benson phillips. it will drive you up the wall but ds will love it.

Hi there. There is a specific charity/help group for hemiplegia - it is called HemiHelp it also has a website. I am sure it can help you.

Children with mild to moderate hemi, and no other Special Needs, will all learn to walk and talk so dont worry. Most walk at about age 2 although of course it will vary a little. As for speech to be honest although speech therapy will possibly be needed there is not a lot they do until about age 3. They should however be doing hearing assessments as any hearing problems such as glue hear will affect speech. If these are all okay then it is a matter of wait and see. Unfortunately in the early years it really is a matter of wait and see and I know how hard it is to worry how things will turn out.

I found that at the age of 1 to 2 the most important thing was physio. And general exercise/fun games to encourage use of both sides of the body. Even swimming if you can manage it but I know it is hard if you have other DC.

Hope this helps.