Hi well we have had the community nurses out today and our GP to see Alex and it's just confirming everything really that he does have CP but they seem positive that it is mild *my fingers are crossed
We are currently waiting for an appointment for his scans to see 'how bad' it is.

Just wanted to know if anyone else is in the same boat and does your child have development delay?
We have been told so far Alex has this plus vision problems which include Nystagmus which our 2 youngest daughters have and is easy for us to cope with.

But being told he as brain damage as in CP well I'm abit miffed I didn't think you could get a diagnosis so quick TBH I don't know anything about CP and so I am limited as in what I should be expecting to happen iyswim

Does anyone have ay advice, words of wisdom or even better a way out maybe lol I really don't want to deal with it and I know how that sounds

Thanks x

hi hun, I dont really have any advice or experience in this but I just wanted to send you a big hug. I hope they are wrong for you but if not you are a really strong person and you cope brilliantly with everything that is thrown at you. xx

Sorry to hear this Joanne. It is quite early to get a diagnosis which is a good thing, it means that you can start physio and doing things to encourange movement etc. I don't have a child with CP but I am a teacher of a class of children with CP, visual impairment and profound learning difficulties. CP is one of those things that varies so much. Some children only have slight problems with balence and walking others have problems with every area of movement and one of my boys has no voluntary movement whatsoever. That's what makes it so hard- you don't know how things are going to go and no one can really predict what the future hold. We have one girl in the school who has problems coordinating movements and doesn't walk or sit up but she is really intelligent and uses eye pointing to show us what she wants. CP doesnt necessarily mean that he will have learning difficulties but they usually go in hand to some degree again ranging from mild to severe. There are different forms of CP, ones that describe which limbs are affected or how the muscle development is affected but I guess that diagnosis won't come til later on.

If you think it was caused by the birth then I would seek advice on it. One of the boys was starved of oxygen at birth because of a delay in sectioning his mum and this caused CP and visual impairment (he has little periferal vision). His mum took the hospital to court and got enough money from them to buy a bungalow and renovate it for his needs (since he doesn't walk).

If they have said it is mild then thats a good sign. What has he reached as far as milestones are concerned?

You really are a super mum and so strong. You must be proud.
Big hugs xxx

Hi Nix thanks for replying : )

We've started physio already, we have had the community nurse out from the hospital she seems nice and he smiles lol not much else really.

Oh he has still got all his sucking reflexes and rooting motion he should have lost that already apparently and he still has his hands clucthed like a newborn iyswim?
He also can't bear weight on his legs either that's all at the moment just the smiling lol not much I know there are different types of CP but I don't know what to expect as in what he has how he will 'develop' ect I am a little confused to say the least and also still feeling sorry for myself

take care x

I know, its a horrible waiting game! I'm not sure there are answers as to how he will develop from here on in. The children I care for are all so different and have developed at different paces. Not all children with CP follow a typical pattern of development. For example, they might not all learn to move around in the usual order of roll, sit, crawl, stand, walk. We had a child who walked with a zimmer but couldn't crawl. It all depends on how the muscle development is affected. It's one of these things where professionals try and treat the symptoms instead of the problem which leads to a miss match (eg. physio for limbs when its the brain that's affected not the limbs).

I have a link to a page with symptoms and shows some delays in development that signal CP.

http://www.pacwcbt.pitt.edu/Curriculum/Core%20103/Handouts/HO%205%20Early%20Signs%20of%20Cerebral%20Palsy.pdf

Good luck xxx

I have to agree with Nicx, my dad has cp and is profoundly deaf and his left limbs are affected. he turns his left foot in and walks on the out side of his foot. He was given a caliper to wear and special shoes, but it is his brain that is causes him to do this. A bit like telling a left handed person to write with their right hand. (its the brain's signals)

Massaging his limbs with baby oil or an aroma therapy oil will definately help to relax his muscles especially in the evening before bed.

With lots of encouragement and determination, your little boy will learn to live life to the full and wear you out just as much lol.
Good luck hun
Maria

Oh maira thankyou for posting it does help to know he can have a full life and live it out iyswim?
We do the massaging and strechting his limbs, arms, hands and feet too.
Nicx thankyou for the link it was very intresting to read.
Take care x

Oh jo, i've only just seen this! I'm so sorry to hear this. How are you doing? As if you haven't been through enough worries as a parent! You so don't deserve this but i know that you are strong and you are a fantastic mum so i know you can cope with everything that's thrown at you! I'm here if you need to chat. Gemma x x

Hiya i see this was written a while ago so u probably have had all the advice u need but i will tell u my story neway.Henry was diagnosed at 9 months old with cp due to a traumatic crash c-section for both us n 10 days of multiple fits for Henry which caused the damage to his brain. He is now 2 n a hlf n has significant developmental delay he is jst starting to sit on his own but cnt crawl walk or talk yet, but he is very clever and knows more than he is lettin on,:lol:
They are not normally diagnosed till there 3 yrs old so u r very lucky to get an early diagnosis. With CP every body is different so no one can tell u what the future will hold with ur son but disabled children are the most loving caring ppl u cld ever meet so just treasure ur son.
I know exactly how u feel wen u say u dnt wanna deal with it, i felt exactly the same way wen Henry was diagnosed n still do even now wen a new problem arises. I since have had a new baby and am so worried that evrything she does that he did is a sign but u jst have to stay positive, dnt think of the bad think of the good and think of the good times u will be havin with ur son from now on, Everytime he learns something new treasure those moments and remember it was all down to u
Take care and i hope u feel better about things soon xxxx

hi i am sorry to put a downer on all this but i do want to wish you all luck with your children and their futures as my best mate gave birth to a little boy 2wks ago 2wks early and he started fitting soon after birth and was rushed to a different hospital.He's since had scan after scan and after results coming back from london they have had to make a decision to let him go as they have been told he has severe cerebral palsy and will never see,hear,talk,walk or eat by himself.

Can anyone advise me as to how to support my friends through this awful time??

((((()))))
kelly I'm so sorry for your friends loss it's the worst thing that could ever happen.

All I can say is give them time but let them know you are there for them whether it is to cleaning/making them tea/shopping/screaming/crying or to just sit there in silence.

hi hun dont take what the hospital says as gossple my little boy was born 10 weeks early his heart stopped 11 times in the first few weeks of his life they said to me that he will never walk talk feed himself or even no who i was and that i was beta off turning his life support off if i wasnt willing to deal with that i took the decision of keeping him alive no person has the right to play god . He is 3 now he is just starting to walk he talks hes fed through a tube and has lung desease and a hell of alot of hospital appointments and guess whot his first words were mummy please tell them not to give up hope hes such a happy little boy so full of life eventhow hes got a sevear disability it dont stop him sometimes i can talk to him beta thn my other half lol its been a long haule and alot of tears shed but i wudnt change it 4 the world just imagine if i had of listend to the docs they ent got a clue and they ent got any rite to say the future cos look at ty he prooved them all wrong xxx

Hi, i've crept in from the pregnancy forum, hope you dont mind! I wanted to tell you my experience of CP. My little sister was born at 26 weeks, and i remember my Mum and Dad telling me that i shouldnt expect her to come home because the doctors said she would die. 3 months later she did come home. It wasnt until she was about 9 months old that the doctor finally accepted what my Mum had been saying and that she wasnt right (she still couldnt even hold her own head up, nevermind rolling over, sitting etc) She was a year old before the diagnosis was made. We were told she would never walk, talk, feed herself, and would need 24 hour care for the rest of her life. At 18 months old, she still could sit, roll over, was potty trained, and could have a conversation with you! By the time she was 3, she had learned to walk on her knees. At 5 she started at a mainstream school, and was one of the most intelligent children in the class. I'm not saying any of this was easy, she had physio and hydro therapy at least twice a week, my mum and dad did it all with her every other day at home. My brothers and i took her every where with us (within reason lol) and we always made sure she never missed out on any oppotunities. She's had numerous surgeries, she used to have botchelin (sp) injections into her muscles to loosen them, and she was actually able to walk for a short time, untill she became too heavy for her muscles to hold her. She took her first steps at 7 years old, but was in a wheelchair full time by the time she was 9. She also had surgery to have a baclofen pump fitted, which is in her stomach, with a tube going up her spine pumping a chemical into her brain to keep her muscles loose. I'm afraid i dont know the full ins and outs, but google should help with that!
Amanda is now 19 years old. She got all A-C's in her GCSE's, went on to college and completed her A levels. She now works full time. She has an amazing group of friends, who have named her skills, (skills on wheels) she gets drunk every weekend, she's stroppy, moody, her bedroom is a complete pigsty, she's in love with a different boy every few weeks, she's got a ton of tattoos, piercings, and her hair is the strangest shade of red i've ever seen, basically all the normal things a teenage girl is, and for that we are immensely proud. She still has troubles, her muscles ache a lot, especially in the cold weather, and she still has hospital appointments to check on her, make sure she's healthy etc. But she never complains, never feels sorry for herself, and gets on with her life. She once said to me that because this is the way its always been, its normal for her, and so theres no need to feel bad for her.
I know i didnt give much advice about the physical side of things, or the practicalities, but basically i just wanted to say to you that CP is not the end of life as we know it, just another way of life. Amanda has never let her disabilities stand in her way, and i'm sure that whatever life has in store for your son, you'll find ways around it together. Always make sure that you ask your doctor whatever questions pop in to your head, however silly you think it might sound, because if its important to you, then its important full stop. I cant tell you that it will always be easy, because it wont, but you get through it. I hope that what i've written will be of some help, I just wish you could meet my sister yourself, as she would answer your questions far more eloquently than i ever could! She's truly an inspiration. Please give your son a big cuddle from me, and feel free to PM me if you want to ask anything else, i'm sure if i dont have an answer i can call my mum or sister and get back to you xx

My twin boys born pre at 31+3 weeks now nearly 11 months or 9 corrected have today been diagnosed ith Cerebral Palsy (Dystonic cerebral palsy affects body tension or tone and diplegic affecting mainly the legs) hopefully they will walk if they are sitting before the age of 2 just a shock really as never expected this thought it may be reflux?!?!? They smile and have good hand coordination both have squints which are getting checked soon and heart murmour. Not sure what else to say as it just sinking in.

Max nd Milo 8 months corrected and Luke nearly 2.

hello, im new to this but really wantd to respond to you, i hope things are going well with your little boy, and say that it is really hard to find out about cp, please try 'www.scope.co.uk' its all about cp and there is some helpfull things on it as well.

i hav mild cp, i we didnt find out untill i was 14 but we kinda always new ther was something amiss and had an idea it was cerebral palsy. (mum had taken me to hosptails since i was 3wks old, i was born 4wks early and mum had a 72hour labor-i was breach and they done nothing to help)
my legs and left arm are affected but it has never held me back, i walkd when i was 3and a half, went to mainstream school*( needed a helper in high sch' thow), have a partner and a son (natuaral birth). also i drive a manual car(was told i never would)without any adaptions to it. i know everyone affected by cp is different, ive had two op's on my left foot, lots of physio and been in and out of hosptail loads but i really hope this helps. Things will work out and please be stong, takecare dx

[Modified by: dee258 on September 18, 2009 11:34 PM]