Cerebral Palsy
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Support please - 13 month old just diagnosed

BlusoopBlusoop Member Posts: 6
edited June 2014 in Cerebral Palsy
My little lad Billy was diagnosed with CP yesterday. Totally didn't see it coming and left the hospital with no information and no idea what this means for him or us at all. Feel like the ground has fallen from beneath my feet.

If you were to look at him you would never guess ther was anything wrong with him. We noticed at 6 months he was very left handed and as a lot of our family are I didn't question it too much. But he rarely uses his right hand at all. However that said he seems pretty strong everywhere else. He's been sitting since about 6 months and has just started showing an nterest in supporting his weight when standing (though there is a lot of that to bear - almost 30lbs/13kg at 13 months old) bless him.

I know only time will tell and we have to go back in 6 weeks for consultation and physio. But I understand CP has many levels, I was hoping someone could enlighten me and maybe tell me how little it could affect his life. Its all too easy to see how majorly his life could be affected but at the moment I need to hear the good news?

Please help - its good to know there are others out there who are going through the same thing. Thanks for taking the time to read this

Replies

  • AlphaAlpha Member Posts: 2
    Hi,
    It sounds like you are in a similar situation to ourselve. Our daughter (nearly 2) was diagnosed with mild CP (hemiplegia) on Monday. She has weakness on her left side but can walk, although with a limp. She talks and is as normal a 2 year old as you can get apart from this weakness. We don't know what other symptoms will present as time goes on and are obviously anxious as to what the future holds.
    As to myself, sleep has been hard to come by since, I feel a great sense of sadness both for our daughter and myself. It's not something that you plan for or envisage happening to your family. I'm doing as much research as I can and we are waiting to be contacted by the local physio department. We have contacted Scope and have someone coming to see us in March.
    Other than that, I have that slightly sick feeling in my stomach all the time and a feeling of impotence that comes from not really knowing what to do.
    I wont say "don't worry" or "everything will be ok" because you will and it won't. All I can say is that you are not alone.
    Best wishes.
  • jodie24jodie24 Member Posts: 9
    Hello, your news has brought memories back - very similar for us. Our 4 year old son Rees was diagnosed at 15 months old. He at the time was commando crawling and not sitting very well. He had been 8 weeks prem but my husband and I and our families didnt not expect any diagnosis. I will never forget the day I found out - I was expecting to go along for physio as been told by a DR and i was thinking he was just a little delayed cos of being prem! I really feel for you and know how hard it is. I must say we are lucky that he can walk. Reading your description of Billy he seems to be doing very well i.e sitting, etc. Rees is affected on his left side, can walk and wears a splint. He has spastic diplegia - did the Doctors give a firm diagnosis for the type of CP Billy has? As much as this is a day you will never forget, it is a journey that definatley will make you stronger and it enlightened us to a different and dare I say special world ! My advice is to definately contact SCOPE something we should have done but were in total shock when we found out and it took us a while to "get going!". We find the physio and OT helps and is the top priorty. But also we made sure Rees was involved in lots as every child is which has helped him to be a very social little boy. I am sure Billy will do great and he looks a gorgeous boy. No words at the moment probably help what you are feeling but I can assure you it does get better! NHS physio is not always frequent enough so we have also got private by using DLA we have for Rees. This may bombard you totally but I can totally recognise what you are feeling. Rees is going to Mainstream school this year - I have had to speak loudly over a couple of things but generally the Professionals are good. Please let me know if you want to chat more. Lots of luck in this difficult time Jodie x
  • ScopeHelplineScopeHelpline Member Posts: 210 Courageous
    Thank you for your post

    If you haven't already done so I would suggest that you contact Scope Response on freephone:
    0808 800 3333 or email [email protected] as they will be able to supply you with information and if you live in England or Wales arrange for you to have contact with a Scope Regional Response Worker for further advice and support.

    Best Wishes

    Forum Moderator
  • blueeyesblueeyes Member Posts: 2
    Hi, I am so sorry you are going through this, at first it will seem so daunting and you will likely go through a sort of grieving process, well we did when our little girl was diagnosed at 11months old, we was told she had severe cp and would not really have much of a life! But oh how wrong they were ( and have apologised since) she is now 61/2 yrs is at mainstream school, is a stunning looking girl who even venture photographers asked to use her image, to look at her you wouldnt think there was anything wrong, and is not only at the top of her year but is already doing work at junior school level! Don't get me wrong it's not all been plain sailing it has taken a lot of work through physio and ot and she is a wheelchair user but believe me this doesn't stop her doing anything, she is even hoping to do a climbing course next month!
    We was told she would not be able to read, write, talk very well, but believe me she never shuts up, she reads almost a book a day and uses a laptop for writing etc and as for social development, we have been told she is the most popular student ever at her school (she has spent the day organising valentines for Monday ha ha).
    The fact that your son Billy is already trying to support his weight is fantastic and sitting at 6months shows he has good balance (this is what our daughter doesn't have and so is unable to walk) which is an incredible start, the problem of being diagnosed with cp is that it is so different for every person affected, we was told that some ppl can have it so mild they don't know that's what's wrong and yet some are so severely affected it can take over every part of life.
    They will be able to give you a guide to how bad they think it is, but our one piece of advice to anyone who asks is never give up because our little girl has astonished everyone and I know this is through determination, her stubbornness, and hard work from everyone involved, and as hard as it is at times we wouldn't change her for the world (except for more sleep haha)!

    I really wish you every luck in the world and hope all your news is good, and don't forget everyone who is on here has been in your place at some point and so this is a great place for advice or even just to sound off, take care and enjoy your gorgeous little boy xxx
  • renacahillrenacahill Member Posts: 145
    Hi there, physiotherapy is a very specialist area and it is always best to be shown the techniques needed by a trained physio. There are private physios but I am not sure about costs involved but even a few sessions to show you some stretching techniques and what you are aiming for would be good. The easiest book for parents is on Amazon ' Teaching motor skills to children with cerebral palsy'' by siegelinde martin, is full of easy to follow pictures and explains CP in a very non scary way. Look at the 'brainwave' site. We are going there in March and it is a very friendly place that focuses on your child and what you want to achieve, giving clear instruction DVDs booklets etc so you can do the techniques at home. It is a lot of hard work as CP children wont learn skills that just come naturally to other children, but they can be taught them and the achievements are so much more because of all that hard work! No to internet!. It paints the worse possible picture for every type of CP.
    You need to look at DLA for Billy. He should qualify for DLA if he requires more supervision, physical help etc than a child of similar age. The Cerebra website tells you how to fill in the forms most appropriately and I'm sure you will also get help via Scope. The money has made the difference between my daughter having to continue to work full time to part time so that between us we can give my grandson daily physio.
  • BlusoopBlusoop Member Posts: 6
    Thank you all so much for your replies. I cannot tell you how they have helped - though you will no doubt understand. I have been through such a wide range of emotions the last few days. I am feeling a lot more positive and grateful that things are not worse. The Doctor seemed to think it could have been a result of a Menengitus scare we had when Billy was just 11 weeks. If mild CP is all he comes away with after that then I should consider us to be very lucky!

    I have just got off the phone from the Scope Response Team - something I couldn't have entertained doing last Friday. Thank you for encouraging me to do it. I realise I will probably get limited help from the NHS so it is up to me to follow up on what help is out there.

    We don't get physio for 6 weeks but want to get started asap - is there anywhere I can get basic physio instruction from online perhaps? Will I be able to get any financial help at all? My husband works but currently I am a full time Mum to Billy and his 3 year old Brother.

    Many many thanks on your wonderful words of support and encouragement.
  • BlusoopBlusoop Member Posts: 6
    Thank you again for all your advise. I really want to make the most of these 6 weeks before we see te consultant or whatever they are. Do you think it would be a help or hinderance to get Billy a baby walker? He is really interested in getting himself upright and I wondered if it might help him start using his legs in an upright position. I have never bothered with them before but if it helps him I don't mind. There is a lot of contraversy surrounding baby walkers I know.
  • BlusoopBlusoop Member Posts: 6
    Just wanted to say an extra thnk you for your message as it made me realise that you guys really understand how I am feeling - your discription of emotion was absolutely spot on. I have a nervous knot in my tummy that makes me feels queasy all day long, almost like the feeling you get when you know you haveforgotten something really important but you can't remember what. I lie in bed at night and all I hear are the words 'Cerebal Palsy' going round and round and round. Occasionally I loose the facade and bravery and I melt into tears for a few minutes then I pull myself back together again. I know I have to be proactive. Scope are coming to see us next week - can't believe how fast they have fitted us in! And I have found our village school (which I used to go to) has two children with CP and they have a Physio and sensory room! I have also found we know one of the childrens Grandma who is introducing me to her Daughter so we can get talk to someone who knows us and what the area has to provide. Hopefully by the time I get to physio we'll be a lot more clued up.

    Thank you from the bottom of my heart!
  • renacahillrenacahill Member Posts: 145
    Oh My! Just reading about the knotted stomach, constant nausea, 3am fears and tears!! My daughter (Elibearbum) and myself used to call it the Elli diet as lbs in weight would just drop off us because of the constant sickness and loss of appetite! Suffice to say that now we have both put on weight over the past year, rarely have 'wobbly' moments, and are looking at a swimsuit diet for the Summer months when we'll have Els out and about swimming and playing!

    You will be fine

    Kate
    x
  • There is hope for your son and for help and support for CP, SCOPE is a great place to start.

    It is good that you have got an early diagnosis and identifcation of the problem.

    Your son's brain will be developing at full speed now until the age of around 4 years old and you should encourage as much sensory and physcial stimulation as possible during this time.

    Getting him to use his weaker limbs as much as possible will help with this sensory and physcial stimulation.

    Encouraging him to reach and grab with his weaker hand will help with co-ordination and grip strength as will encouraging two-handed activities such as holding a light football or soft toy. Singing to him and getting him to clap along will also help with this brain development.

    We treat many CP children at our Centre in Newry, Northern Ireland, some as young as 3 months old and we continually see children making great improvements using this motor re-learning and cortical retraining approach.

    Please feel to contact us for more information or see our website http://www.first-step-therapy.com
  • onwardandupwardonwardandupward Member Posts: 1
    Hello

    I have just read this and felt I must reply. It was this bit in particular that caught my attention:

    "If you were to look at him you would never guess ther was anything wrong with him. We noticed at 6 months he was very left handed and as a lot of our family are I didn't question it too much. But he rarely uses his right hand at all. However that said he seems pretty strong everywhere else"

    This could have been me writing about my daughter when she was at the same age - I couldn't believe that there was anything wrong. I put it down to 'extreme left-handedness' because there were lots of left-handers in the family, just like you.

    Mild CP on one side like this is known as hemiplegia. Not to take anything away from Scope, who are fantastic, but there is a website/charity specifically for this called Hemihelp, who have been fantastic for us. When you are ready I recommend you google it, it's a small organisation but they organise meet-ups where you can meet others in the same situation. Their website also offers clear information and a message board.

    Notice that I said 'when you are ready' because you might not feel like it just yet; it took me a while to feel up to doing anything . All the feelings that you are having now are normal in your situation. That's easy for me to say now (12 years down the road) but you will get through it. :)




  • chloesmummychloesmummy Member Posts: 4
    hey Blusoop
    my little girl chloe is 2yrs old and we only got a diganosis on the 7th feb.
    you are very lucky they have picked it up so early.
    we have been trying for over a year to fidn out what was wrong, my little girl couldnt sit by her self at 6months and didnt pull to stand untill she was 14 months old.
    i would totaly agree with you if u looked at her you wouldnt think there was anything wrong untill she is with a other child who is the same age or even younger than her and you can see she cant play with them as they are running around and she cant.
    i no your pain about waiting for appointments we had to make a complaint to the hospital before we could get the results from her MRI scan to confrim her condition.
    we were left totaly in the dark. we thought just like you we would be told she would justr need physio but then our consulant dropped a massive bomb shell and we was devastated. we left there with no information and it wasnt untill i made an offical complaint to our hospital for the delay in diagnosis that they told us to contact scope and we have a regional supporet worker coming out tomorrow and im really nervous now.
    my little girl has 3 excercises from the physio to do and she hates them but we no that is the only way we can get her walking.
    i feel for you as we are in the same postion
    hoping for the best for you
    xxx
  • AJBellAJBell Member Posts: 2
    hi, not been on here for a long time, but your first post, and all the comments that have followed are exactly as we were when my son, Luke, was diagnosed at 23 months. Again the paragraph about 'extreme left-handedness' hit home, cos that was how we were. I know it will be hard to hear, but it will get easier to live with, and your son sounds very like my luke, especially the 'you can't tell' part. In our case Luke is now 9, and is/has always been one of the brightest pupils in his mainstream school, and is a fighter. Yes, unfortunately, we have had splint problems, and some surgery, (and facing more) - but remember all cases are unique, you may not have to go through this. All I can say about it is, it's actually harder for us to cope than him most of the time. To him, and to all his friends he is just Luke, one of their friends, who just happens to have a bit of a dicky leg/foot/arm which needs sorting out every now and then!
    My mum once said to me, which keeps me going in the difficult moments, "special children are given to special parents!" Think of yourselves like that. Best of luck for the future xx
  • AlphaAlpha Member Posts: 2
    Hi,
    as our children were diagnosed at about the same time, I thought I'd let you know what has happened to us since.
    From first being referred to the hospital to a confirmed diagnosis was about six months ( everyone was sure of her condition, MRI confirmed it ). The neurologist then told us that our child would need physio and he would refer us to a therapist. After over a months wait we received a letter telling us that we had to see the local paediatrician and the wait to see her would be 8 months. That's before we get referred for any treatment. Then we will go on another waiting list.
    We applied for DLA.
    We were refused.
    Makes you proud to be British.
  • LeilasmumLeilasmum Member Posts: 8
    Hi Blusoop,

    My daughter was diagnosed with spastic diplegia when she was 1yr3mths old. We knew something was wrong as she still couldn't sit and only commando crawl. When we were first told, I was in shock for a few weeks and everytime I looked at my gorgeous little girl I could only think "Her brain is broken". It took me a while to get over that and see her again for what she had always been to me, my lovely, adorable daughter who has been enriching our lives sooooo much since she was born.
    She started crawling as soon as physio started and started sitting after the first few weeks of it. She started walking at 1yr10mths and has just started to walk around outside and other public places (e.g. supermarket) without wanting to hold my hand (though she's been able to do this inside our own house, where she feels much more secure, for several months already). She is now 2yrs4mths old.

    I know what you mean reg. the slightly sick feeling, I had that as well but it's gone away. Someone else said she can't tell you it'll be alright. I can. At least, it might well become alright. I've gone from feeling immeasurably sad for my daughter to feeling very very lucky. Leila was born at 29 weeks and the bleed that caused the abruption of my placenta as well as her cp could have caused her brain a lot more damage than it did. Considering our circumstances and the problems many premature babies have to battle with, I honestly feel very very grateful that we are only dealing with her spastic diplegia. I am fully aware that at times this will be challenging for her (and us), e.g. perhaps in school etc, but she has achieved so much already and is a very motivated and happy little girl, I'm not scared for her. Some kids wear glasses, others are clumsy, my daughter wears splints and isn't as fast or stable as others. She will cope and thankfully we have a lovely circle of friends and family who will all support her and us in this.

    The amount of physio he'll get will be largely up to yourself (at home), and while you might always feel you're not doing enough (I still feel that way), it gives you a lot of power over how much progress he'll make. Do your best and know that he'll be the best he can be. I really hope you'll get to a place where you can just enjoy your son again and focus on his progress rather than on what he can't do. Try not to compare his abilites to those of typical children his age, just enjoy his chievements in their own right. He will make you sooo proud and happy! I wish you all the best and hope your heart will be at peace one day. Mine is now, so it is possible!
  • LRawleyLRawley Member Posts: 2
    Hi
    I just thought that I would reply to you to let you know what is possible for children with CP to achieve. I am 38 years old and at 3 days old was written off by the medical profession as only having 24/48 hours to live. Also at three days old the same medics put a diagnosis on my records of 'spastic diplegia - cerebral palsy' although no one had the decency to inform my parents. I grew up with problems with my sight (squint and vision loss to my right eye), hearing loss in my left ear and a 'bad' left leg. Up until the age of 5 I had several casting operations in a bid to stretch the leg and hold the foot in a better position. I would lie with my feet at ten past two instead of ten to two, if you know what I mean so the casting held it in an outward pointing position. When that didn't work and I was still toe-walking with my left foot, I had my achilles tendon cut and stretched to bring the heel down. At 12 I was discharged from all the consultants and jokingly told by the orthpaedic surgeon to "never darken his doorstep again". At 16 however I did just that when it was found that I had scholiosis and was re-referred to him. We were told that because of muscle wastage on my 'bad' side, my spine was being pulled over to the right and the only way to correct it would be to have a rigid metal pole inserted. I refused as I knew that I wanted to work with children at at 38 I am doing just that. Never once in those 16 years was the term Cerebral Palsy mentioned at any consultatant meeting. At 34 I began studying for a Foundation Degree and found that when sitting for long periods of time, I began to have real problems with my hip and knee joints. After going around the houses via phsio and podiatry, I found myself back in an orthopaedic consultants office. He looked at my legs, immediately told me that I had a club foot (something else that was never mentioned before) and sent me for Xrays. When I returned he was pouring over my records. He then matter of factly told me that I had in fact got spastic diplegia and that was the root cause of all my problems. It was like the missing pieces of the jigsaw that was me had finally been found and given their rightful place. Turns out because I was above average intelligence, Doctors wrote off the CP diagnosis over the years and it was never mentioned. I was officially diagnosed with mild spastic diplegia at 34 years old.

    I'm not saying that my childhood was easy - I was often picked on because I walked slightly differently to everyone else, and I learned at an early age that standing with my arms curled up towards my chest wasn't how my peers naturally stood, and I trained myself to keep them down by my sides....

    The best thing was that my mum and dad never treated me differently because they never knew that I WAS different to my friends. I was always made to have a go at things, sometimes I could do it, sometimes I couldn't, sometimes I found that I could do something - I just needed to find a different way of going about it! Even now I struggle to put socks on, take shoes off or put trousers on without sitting down - if I stand up as soon as I raise my right foot off the floor I keel over....

    Your son sounds like he is doing very well, always encourage him to have a go, he will be able to do something if he wants to, he'll just adapt it to his way.

    The world is his oyster - ok so we may have weakness to our side, or our legs don't work but it doesn't mean that our brains don't.

    I graduated last year with a First class BA hons degree, I drive a manual car, I'm married and bringing up two beautiful children - I often wonder how much I would have achieved if my life had worked out differently

    Good luck with you son - he looks a little star!!
    Louise
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