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Newbies - Can We Introduce Ourselves?

GuestGuest Member Posts: 1,968
edited June 2014 in Parents and carers
Hello

I am still at a bit of a loss for word so please excuse me if I ramble on - I don't feel as if I'm making a lot of sense at the moment.
My beautiful daughter Emily Grace was born on May 23rd after acute trauma.
Our Story is here in full - just ignore the bottom few paragraphs - cos things have moved on a bit.
http://www.birthtraumaassociation.org.uk/birth_stories/Sal_story.pdf

After being very pleased with Em's progress initially, our physio has now said that she looks like she has athetoid CP. She is now 22 weeks old. I am devastated and although I know I should be happy that she is indeed here - I feel heartbroken at this news. We have an appointment with the paed next week and our physio said that we can probably expect a diagnosis. CP was first mentioned to us when she had been home for 2 weeks. After thinking that he was coming to see us for her aftercare, he looked us straight in the eye and said 'Well, I've got two words to say to you - Cerebral Palsy' and handed us a load of Scope printouts. As you can imagine we felt like the bottom had dropped out of our world and I don't feel as if I've enjoyed Em at all since.

But it now looks like we are going to have to face the fact that she has got athetoid - although I didnt expect such an early diagnosis. Our physio came out last Thursday and while we were talking she told me that she had only ever worked with 5 people with athetoid CP and that 'one of them was a walker and a talker'. How insensitive can you get. I am so angry with the way we have been treated by these so called professionals - and we have not once been told by the paed of this condition.

So, my questions are: Is it really as rare as they say it is? I am not concerned as much now with Em walking as much as getting some hand control and speech in the future. I would love to speak to other parents - my husband and I are stumbling around in the dark - thinking the worst case scenario and not being told of varying degrees of athetoid CP. What can we do for her now? We can see that her head control is already getting better - side to side is good - but up and down is wobbly. She isn't grasping and has trouble reaching out - but will happily bat at toys from underneath her play gym.

So thats us - hope we can become regulars,

hugs
Sal, Kevin, Dan and Emily

Replies

  • mafalamafala Member Posts: 72 Listener
    Hi Sal

    It seems that everyone reacts to the news of their child in a similar way. There is shock, grief, anger, confusion and a lot of fear. It's unknown territory for anyone as suddenly you can't take your child's development for granted and you desperately want to know how your child will be in the future. No one can really tell you what the future holds, whether your child will walk or talk. All you can do is work from the assumption that they will both walk and talk, but that your child will need extra time and attention to achieve these milestones. Right now, Emily's brain needs lots and lots of stimulation and lots and lots of opportunities to try things.

    My son is 4 with athetoid/ dystonic CP. He didn't have it from birth, but from 6 months old. It was very difficult. I always tried to do age-appropiate things with him and tried to focus on things he could do and not the things he couldn't do. We hid from the world the first few months because I was too bereaved to face it. Counselling really helped me talk about my feelings and one day the cousellor asked me who I felt most sorry for, my son or myself. That was a turning point for me, so I decided to face the world again. My son speaks with some difficulty, but when he does a lot of funny and cheeky stuff come out of his mouth. He's really bright and goes to a mainstream school with full support. He is also a full-time wheelchair user. He is accepted as himself first and foremost and his disability is secondary. I feel that I'm at the end of that torturous journey that you have just begun emotionally and that's when you reach the point of acceptance.

    Looking after a child with CP is a practical job too. There will be lots of appointments. At Emily's age she should get an OT that will assess her sitting needs, a physio to work on her gross motor and order her a standing frame, a speech and language therapist that will advice on feeding etc. Make sure that you get all the services that your daughter is entitled too. You've already had encounters with the professionals. Some are not as sensitive as they should be, but you will also encounter some amazing therapists who will teach you loads. Athetoid CP is rarer than the spastic type, but it's not that rare. I can really recommend the Nancie Finnie book "Handling the Child with Cerebral Palsy at Home".

    I hope you'll start to see the light at the end of the tunnel sooner rather than later and don't forget that Emily is a child like any other at the end of the day. She just has more needs in certain areas.
  • frenchyfrenchy Member Posts: 9
    hi to you sally and your family, i think you will find this site a real help on those bleak days when it all gets a bit much and you need some support and guidance..
    looking forward to chatting to you again..
    my daughter is eve she is 5 years old and has spastic diplegia
    kate xx
  • GuestGuest Member Posts: 1,968
    Hi Sal
    i think Mafala said it all ,not much i can add to it i'm afraid.
    all i can say is try to enjoy Emily as much as possible and just take one day at a time,no-one knows what the future holds but right now she's your beautiful little baby,who will turn into your beautiful little toddler and so on.
    My daughter Siobhan had spastic diplegia too so i can't give much advice on the athetoid type but i say just keep positive, the power of positive thought woks wonders,i always find it does anyway.
    look forward to hearing more about Emily.
    lots of love
    evelynxoxo
  • Vickie27Vickie27 Member Posts: 1
    Hi Sal

    my little girl is 3 years old in december and i was only given a diagnosis of CP about a year ago and actually read it on a report as opposed to being told by the so called professionals. i too was absolutely devastated. All i can say is that they will alaways give you worst case scenario and carys only started to commando crawl about a year ago and the same time started grasping with her left hand. carys only uses the left arm the right arm is redundant. Carys can not sit unaided or walk and i dont know whether she will.

    One thing i do know is that children with special needs are angels. They are born for a reason to people who will trluy love them no matter what. You dont see bad parents with children who have disabilities. I used to get angry when i saw girls smoking, drinking some on drugs having perfectly normal babies but then it dawned on me. If they had children who needed alot of love and attention and encouragement they wouldn't look after them as well as us parents do.

    So see your little girl as the angel she is and treasure every moment. every little thing she does is an amazing milestone not to be taken for granted. She is special. The more love you give the more you get out.

    Stay strong and look at what she can do not what she can't do. i have had to learn to accept carys for who she is and by doing that i am enjoying her so much, i no longer look at other children longinigly. i just think my baby girl is amazing she has achieved so much. If she never walks then so be it. Like i say i feel blessed to have an angel as my daughter.

    I am looking into spiritual healing at the moment. Children with special needs are the angels in this world.

    xx


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  • NicciNicci Member Posts: 1
    Hi Sal & family, Can't offer you any advice I'm afraid as I am new to this as well. Lucy was born 10th may this year suffering from a viral infection that has damaged her brain. Just wanted to say I know exactly where you are emotionally it's very hard to accept that your precious child has such health problems. I think it's like a grieving process, Lucy too has fought so hard to stay here nearly lost her 3 times so I owe it to her to be positive & I do try, just wish we had a crystal ball coz it's the not knowing how she'll be when shes older that hurts the most. Love to you all, this site is a huge support to me, hope you find it like that too. x x
  • jennyhjennyh Member Posts: 4
    I would just like to echo Mafala. My son is 8 and was diagnosed with athetoid CP at 7 months - but we were expecting that. Athetosis is supposedly about 10% of all CPs but in a way it is a spectrum. It is certainly true in our expereince that many physios are not expereinced with how athetosis affects differently from spasticity and in our case this meant that the physio actually painted far too bright a picture when he was young ("oh yes he'll walk cos he's not very severly affected..") This was because she was looking for tight stiff limbs (spasticity) and so when she found loose floppy ones she thought he was OK!
    I don't want to be negative - my son can stand and weight bear but he can't walk unaided as his balance is too poor and he wobbles a lot. He has used a power chair well for 4 years and also uses a communication aid as he can't speak. He has trouble with eating and we have to feed him but he is a really adventurous eater and likes loads of things my older son won't even look at!
    He is at local mainstream school doing well (with a good package of support) and is one of the most active, dare devil kids I know! (yesterday skiing at Xscape in Leeds with instructor from Disability Snowsport - fantastic!)

    Finally I do want to add that we don't all believe that disabled kids are angels! Personally, and intending no offence to those who find comfort in the sorts of beliefs posted above, I believe that disabilty happens - sometimes because of negligence and sometimes not. I do not believe that I am in any way a special parent - I just muddle along like everyone else. My disabled son is a child first and foremost - he can be happy, naughty, clever, rude just like any other child and I hope that we and others treat him accordingly! I do agree with the poster above however that you should enjoy your child and do be proud of her achievements, just as you would be proud of any other children you may have now or in the future.
    With best wishes, Jenny
  • lisacurtis2lisacurtis2 Member Posts: 1
    Hi Sal & family,

    I also had a uterine rupture in August 2005. My Daughter Ruby is now 14 months old. She has been diagnosed with CP and they think it's dystonic, the basal ganglia is the part of the brain that's damaged. Basically her tone fluctuates between tense and floppy and she can't control the gradiant. She doesn't appear to make involuntary movements or seem restless but extends and acrhes quite a bit. It was a massive shock for us, you don't think these things can happen to you, you'll know all this. I don't think I'm over the whole birth thing it was awful!

    Emily sounds quite similar to Ruby at that age with the grasping etc but it will come over time. Ruby isn't sitting independantly yet but has got a little bit of sitting balance and her head control is quite good but still needs to improve, however her hand function is pretty good although nowhere near age appropriate, she can't transfer from hand to hand but can play with toys in either hand. She's a very bright little girl and has a big personality, she trys very hard to do things and is very determined but most importantly she has a beautiful smile and is a very happy little girl. Thank you for sharing your story on the Birth Trauma website, it was my first visit I may even put on my story.

    Keep in touch.

    Love Lisa, Steve, Michael and Ruby.
  • GuestGuest Member Posts: 1,968
    Hi Sal and family,

    Reading your entries has brought a lot of memories back for me of those first few years. My son is 11 with athetoid/dystonic CP which was caused by a birth injury (full-time wheelchair user, very poor hand function, and speech that you can't always tell what he's saying - v handy for swearing!). I know that it's almost impossible not to.., but you will drive yourself mad thinking about the future and what your children will and won't be able to do physically/socially. Nobody can predict precisely what effect the brain-damage Emily has suffered will have on her, but in time you'll find what approach you as a family want to take with physio and all the rest of it. The professionals will give you plenty of advice - whether or not you take it is up to you - sometimes you just know when they're giving you duff info.

    Don't allow this to take over your life, I know it's hard but try and get out on your own once in a while. We took a legal action against the hospital where our son was born and that gave us something else to focus on.

    It is a totally different experience of parenting and Emily will test you in new and unusual ways, but it is all the more rewarding when you reach a milestone and you will be so proud of both her and yourselves. It takes a long time to get over something so traumatic, give yourselves time.

    Best wishes

    SJ
  • stephgreenstephgreen Member Posts: 28
    Hi there we are in a similar situation, although we think Jack has quad cp. We are still going through different tests genetic etc as they dont want to diagnose jack. Although he has great head control, laughs, smiles, babbles eats solids which are all posotive. But Jack is not reaching out at 8months it feels like he may never do this and we feel very scared for Jacks future. Some days i cope others i cant believe this is our life now and its very grim. I really wanna get to know other mums and dads who are goin through the same as its becoming very hard to be around "normal" babies. Hope to hear from u soon xx
  • stephgreenstephgreen Member Posts: 28
    we had exactly the same colic, reflux crazy paranoid mum no one listened. Jack used to scream at feeds sick the whole lot back up, he didnt put on weight for ages. Then when we couldnt take it anymore we left him in hospital and the nurses noticed his unusual muscle tone. Prob the hardest thing to deal with so far in my life and like u say does get easier but some days are horrible and u just wana hide away.It has made me stronger tho. Jack is def happier he is on baclofen which has most def helped. He does show interest in toys i just wanna help him become indepenent x
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hiya

    Our son Tom is 17 months old and has quad spastic cp. Tom is a twin and was born 2 months early as his sister Iris was struggling when I developed pre-eclampsia. Nothing traumatic happened at birth or in special care to explain his brain injury (PVL in both hemispheres of the brain damaging the lateral ventricles). It seems likely that something happened to the blood flow or oxygen supply during my pregnancy. We'll never know.

    Like Steph's Jack, Tom had real problems opening his hands (he suddenly started opening thumb and forefinger at about 9 months, then a couple of fingers and now can use his whole hand although his little fingers don't really like to uncurl). His hand function really has improved amazingly quickly in the last 6 months and he can now eat Cheerios with a pincer grip and also cross the midline to swap a toy from hand to hand. It takes time but I'm sure Jack will get there.

    Tom was diagnosed with colic for the first 11 months of his life - this diagnosis did not explain away all of Tom's problems and we, as his parents, spent 11 desperate months just knowing something else was wrong but being told by so-called experts that he was just fine. We was diagnosed with quad cp at 11 months. Tom also has a bilateral convergent squint which has been corrected with botox. He has some issues with drinking milk and swallowing air (we use Thick & Easy in his milk) but does really well with his solid food, and is really starting to use some words and vocalise a lot.

    He's such a smiley happy chappy and we're so lucky to have him (and his sisters). We've been through a lot as a family - such worry and distress before his diagnosis and more of the same after we were told he has cp but I'm just getting to a point now where I cry less, feel less worried and am really enjoying just hanging out with him and seeing him progress. I worry for the future but I know we'll have the strength between us to make the right decisions, help him with the things we has the capacity to learn and help him come to terms with the things that he can't do.

    I'd love to chat with any of you - this is all so new and I'm really feeling my way through it as well as being torn in a billion directions because I have 2 small babies and a 3 year old who all need me.

    Much love to you all

    Maria x
  • kaziankazian Member Posts: 2
    hiya my name is karen and i have a 7 year old who we think has mild cerebral palsy we have had a long hard road to go down with him as he has epilepsy ,rotary nystagmus and global developmental delay and is currently attending a special school .we recently applied to a charity for franklin to recieve a specialised bike and in doing so have had to get a letter from his physio and in the letter has put he has spastic daplegic cerebral palsy which we were never told he had so if there is anyone out there who has a child with similar symptoms please let me know as i have no faith in proffesionals that we have seen since he was a baby.thankyou for taking the time to read this .
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