hey my name is Joanne im 20 and my 2yr old leo got diagnosed with Spastic diplegia Cp when he was 16 months old.

it was a shock but now its just normal.

he has to wear AFOS every night and a abductor brace. he also walks with a walking aid.. he cant walk unaided yet.

it would be nice to speak to you all in the same sit

hiya taff

just a quick message to say i know  how u feelin cause my lil boy got diagnosed with cerebral palsy day before his first b/day and he 2 in just over a week and hes only just started to crawl and he is affected on his left side but more his arm then leg,hope all is well and if u want to know anymore then message me bk take care

Hi, my daughter also wears the piedro boots and they are brilliant a lot more stylish than they used to be, have a look at  http://www.aodmobility.com/Piedro_Shoes/body_piedro_shoes.html it shows the kinds available, HTH x

My three year old has cerebral palsy and has been wearing piedro boots since he was a year old - they are fantastic as they provide support to his ankles which enable him to walk. Don't worry too much about information on the Scope website - as other people have said CP varies so much from child to child. I was warned Owen would probably never walk as he didn't sit up until he was neaqrly fifteen months, then we were told he might be walking using a frame when her was seven or eight- he's three runs around, climbs on EVERYTHING and gives me a heart attack at least five times a day as he has no sense of danger and is completely fearless. He can't walk very far outside but he attends a main stream preschool and keeps up with the other children even if he is exhausted when he comes home! Having a child with CP is challenging, yes, but it's also rewarding and, at times, incredibly humbling when your child teaches you something about being a fighter and living life to the full. Good luck to you and your LO. Mel and Owen xxx

Hi Kelly,

Dont worry you're not sounding rude. I can understand why you don't like it being called that but it is only a medical term. Bit of medical jargon for you now......"Spastic Cerebral Palsy, here the cortex which is the outer layer of the brain and controls thought, movement and sensation is affected. Tight and sometimes jerky muscle movements result." Quadrapeligic just means arms and legs like hemaplegic is just one side of the body.

Paige has jerky movements in her legs and back, her arms have got better and are less stiff.

HTH

Nicki and Paige

P.S Paige turns one on monday nd has just begun to stand.

i dont mean to sound a little rude but i have CP... Why is it called Spastic Quadarpalegic Cerebal Palsy...... I wouldnt consider myself as a spastic im far from it.... it only effects my legs not my brain... i have a degree in Behavioural Science and just about to start a degree in Nursing....... sorry for sounding so rude but i just hate CP being called the above..... sorry again

oh the boots are great, i had them when i was little for my cp (which also only effects my legs) read CP thread i have written a little about myself in it.. feel free to ask any questions

Hi Taff,

My little bundle of love was diagnosed with CP after an MRI at birth, they've not been able to advise us of how she'll be affected and the guilt as a parent is awful, we think wow what did we do wrong, the answer is we did everything we're supposed to. It's really good that Jared is getting the treatment he needs and I bet you he's a bouncy happy baby boy.

The best thing in the world is when our little ones smile and giggle, we just have to love and enjoy them even though it's so hard not to worry.

Just remember to always smile as ther's no better look than a child gives to it's mother.

Hope this helps.

xx

Taffymum - it's great that Sarah is here to give you all the right info - I just wanted to add (in case you have read anything really scary on the internet) that CP can range from very severe to very mild - but if there is a positive thing to say about it - it's this : it won't get any worse - it isn't a condition that progressively deteriorates so your son can only make progress and improve.

When my son was born all floppy, I used to cry myself to sleep at nights wishing he had cerebral palsy!!  I thought it was either that - or muscular dystrophy (which is life limiting)

In the event - he has neither - its global learning diffs and low muscle tone.  He is nearly 9 now and doing well - as I am sure your son will.  The outlook is positive.

I don't have any experience of your situation but I wanted you to know I'm thinking about you.  I know you will be stressed out & thinking the worst at the moment.  Like everyone has said you dig your heels in & make sure you get all the support that you need for you & Jared.  My gran cares for my younger cousin who has spina bifda which is completley different from cerebral palsey but she got in touch with as many charity run organisations she could which have been her life line for meeting other carers & getting the right information for what help is out there & what they were entitled too.

Hi Taff,

          OT's will work with you / your son on fine motor skills (hand writing, feeding, reaching and grabbing type movements) and they will also look at equipment needs for now and in the furture. An OT's job is to promote independence for your son, assisting him to achieve this independence using alternative techniques, specialist equipment, adaptation etc...

 Usually referral comes from GP/ Paediatrician / and occasionally physio, it just depends on your location and local services.

But anyhing that you need to assist your son with developing his daily living skills and abilities at home, school. nursery will also be looked at by the OT.

I hope this helps ? keep in touch and keep us updated with his progress...You'll have lots of ups and downs..But isn't that parenting ?  LOL plenty of hugs ... and infinate amounts of faith and belief in anthing is possible, will get you through        x Sarah

Hi....i also have a little boy(Sion almsot 7)who has spastic quadraplegia cerebral palsy.I found a wonderful site www.specialkidsintheuk.org which is full of usefull advise from mums(and dads)of children with all sorts of different disabilities.If u ever fancy a chat,feel free to pm me xx

Thank you so much ladies for all of your replies - You have all given me great hope for Jared and I really appreciate that.  You all have very special children so please give them all a big hug from me!  Taffy xx

Hello Taffy, my 2 year old son has right sided hemiplegia, we knew about this from day one as he was so poorly when born and needed an MRI and it showed up on the scan.  He has been having physio every fortnight and now goes to a weekly physio group where he has OT and SALT as well.  He has progressed beyond all belief - the doctors at the hospital who did his MRI say they would never have matched the child he is today with his early scans!!  Our children do have a way of beating all odds against them!

They didnt think my son would crawl but he started to - like a kitten crawl about 15 months and then began to pull himself up/ stand alone and now can walk.  He does toe walk, esp on the right and the physio is talking about a referral to the feet doctor at the hospital to look at shoe inserts.  Then possibly boots as this will help keep his heel on the floor and encourage the flexion in the ankle, as the muscle is so tight it is shortening one leg.  If you are offered boots now then that is great news as the waiting list is ages!  they have to be prof fitted and checked by the physio/hospital and i think they take about 3 weeks to come. My friends son has these, you can choose colours and styles, his are nubuck tan leather and look exactly like kickers!

  I've been told to get my sons shoes from startrite now as they have a slight arch in them and this is better for his feet at the moment than the clarks ones.  We are also told to massage and flex his ankles to get the full range of movement in his feet.  the physio will give you lots of tips and suggestions about how to move your son onto his target and possibly suggest an OT, although my son got this as his arm/hand is affected too so may be different for different things.  If you want to ask anything please pm me, you are not alone.  good luck.  Lisa xx

Hi Taff, My DD has Spastic Quaudraplegic CP and was diagnosed at 11 months. She is now 13 years old. I too was told that she would never be able to do anything for her self but She never stops talking, wnet to a mainstream primary and is now in a special needs high school which deals with the national coriculum. She dose Archery, gose to the pictures with friends and has just as much attitude as any other teenager.

Physios are great sources of info and can usually answer any Qs about CP.

Kaitlin also attended Bobath which is a different type of therapy for CP and it did help her when she was 3 years. Another thing that might help is hydro therapy which is doing the physio in a warm pool.

I hope this is of some help to you. Make sure you dig your heals in to get what you need and are entitled to for your wee one. It can be a fight some times but they're worth every bit of it and just to see the smallest achivement, brings such pride!!

Please post me if you need to talk. I'll always be there.

Love, luck and hugs,

Taz

Hi Taffy,

My DD Paige has Spastic Quadarpalegic Cerebal Palsy, she was diagnosed at 6 months. I would suggest you have a look at the Scope website....we found it really informative and at least you can trust the info you are getting from there!

Its good that you are already have a physio, they are great for pointing you in the right direction. Paige doesnt have an OT, but she does see a Paedatrician - usually they will send out referalls for things if they think you need it.

My best advice is that never take no for an answer. Our consultant said that the brain damage that Paige suffered meant that she shouldnt be able to do anything - i mean a vegetable! But she is the complete opposite, shes trying to crawl and we cant shut her up

Your physio will show you exercises to do, so be thorough in doing them. We have just been referred to The Movement Centre, in Shrewsbury for standing and walking frames, so it may be worth mentioning those.

Keep your chin up and live evryday to the fullest.

Nicki and Paige

Hi Sarah - thanks for your kind words....Jared is seeing a physio - has been once a month since December as he wasn't crawling at 12 months old - he started to crawl at 17 months.  It hasn't been mentioned about an occupational therapist - would we need a referral from our paediatrician or will the physio be able to point us in the right direction? I'm just feeling a bit overwhelmed at the moment and want to make sure that I don't miss any opportunities to help Jared develop.

Thanks again

Taffy x

Hi Taff,

    I'm children's OT does your son see an Occupational Therapist (OT) they will work on play and development with your son...if I can be of any help let me know ?  keep smiling.. he's got a great life ahead of him...and so much to explore and learn.. x Sarah

Hello - I'm new to this board but not to Bounty.  My 20month old son Jared has just been diagnosed as having cerebral palsey (in his legs)  - just wondering does anyone else's LO have this and can anyone offer me any advice as it has come as a bit of a shock.  I have done a google search but it is a bit mind blowing.  Jared sees a physio who is coming next week and bringing some boots for him to try - anyone had experience of these?

Thanks in advance!

Taffy xx