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24year Old Mum,of A2year Old Who Has Spastic Diplegia Cp.

GuestGuest Member Posts: 1,968
edited May 2014 in Parents and carers
Hi everyone.
My son Harry was diagnosed with cp less than a year ago,after more than a yr of fighting for a diagnosis or some kind of explaination for why he was having problems walking. An awful lot of things have been dealt with in a bad way since i first brought up my concerns,and all through this time till now. Which have all left me extremely frustrated,angry and upset. I wont go in2all this as this message would go on forever!!
After countless doctors appointments and going to the hospital four times,we finally got a referral to a physio in december last yr,who has been great(the only person who has been)!! After a few months she referred us to see another doctor. She told us after a few minutes that Harry had cp,spasticity affecting his legs(at this time i had already googled my thoughts and had an idea this was the case). This was both a relief(as i was being told i wasnt a overprotective mum),and a devastating blow(as no one wants to be told their child has something "wrong" with them). His cp affects his walking,balance,climbing,he cannot jump or sit on the floor easily without being uncomfortable. Probably more but its hard to think of everything!!
Since then we have been for a MRI,continued with physio,had splints made up,boots&have had an appointment to speak about botox!! Now people are bringing up SDR and negligence claims. I just feel as though there is too much to deal with. My boyfriend keeps his emotions closed,and doesnt deal with mine very well. I feel as though i have to be strong for Harry, but also for all our family and evryone else. Its natural to say "im fine",when people ask you,even when you arent.
My son is amazing,everyone adores him&hes still the same Harry as before. He is seeming to excell with his speech and learning&has a personality that draws people to him&for these things I am so proud. But now I know that his future is going to be alot different to how Id always imagined,which I still cant accept. I would love to meet other parents with children who have cp,&also for Harry to meet other children with cp,as we never have. I dont know if this is a way of making these things happen.
Sorry for such a long message,it wasnt intended,it just all came spilling out(&this is edited!!).
Thank you to anyone who reads this,I wold love to recieve a reply.
Hayley xox

Replies

  • harrysmumhharrysmumh Member Posts: 6
    Hi everyone.
    My son Harry was diagnosed with cp less than a year ago,after more than a yr of fighting for a diagnosis or some kind of explaination for why he was having problems walking. An awful lot of things have been dealt with in a bad way since i first brought up my concerns,and all through this time till now. Which have all left me extremely frustrated,angry and upset. I wont go in2all this as this message would go on forever!!
    After countless doctors appointments and going to the hospital four times,we finally got a referral to a physio in december last yr,who has been great(the only person who has been)!! After a few months she referred us to see another doctor. She told us after a few minutes that Harry had cp,spasticity affecting his legs(at this time i had already googled my thoughts and had an idea this was the case). This was both a relief(as i was being told i wasnt a overprotective mum),and a devastating blow(as no one wants to be told their child has something "wrong" with them). His cp affects his walking,balance,climbing,he cannot jump or sit on the floor easily without being uncomfortable. Probably more but its hard to think of everything!!
    Since then we have been for a MRI,continued with physio,had splints made up,boots&have had an appointment to speak about botox!! Now people are bringing up SDR and negligence claims. I just feel as though there is too much to deal with. My boyfriend keeps his emotions closed,and doesnt deal with mine very well. I feel as though i have to be strong for Harry, but also for all our family and evryone else. Its natural to say "im fine",when people ask you,even when you arent.
    My son is amazing,everyone adores him&hes still the same Harry as before. He is seeming to excell with his speech and learning&has a personality that draws people to him&for these things I am so proud. But now I know that his future is going to be alot different to how Id always imagined,which I still cant accept. I would love to meet other parents with children who have cp,&also for Harry to meet other children with cp,as we never have. I dont know if this is a way of making these things happen.
    Sorry for such a long message,it wasnt intended,it just all came spilling out(&this is edited!!).
    Thank you to anyone who reads this,I wold love to recieve a reply.
    Hayley xox
  • nicxnicx Member Posts: 4
    Hi Haley,
    I have only just registered on here as well and the first post I read (Yours) sounds almost identically to Finley's story. He is 2 now and has been diagnosed with cp begining of the year. He also suffers from Spastic Diplegia cp. his arms are just a little bit tense but his main problems are definately his legs. Finley is getting his legs in casts on Friday followed by splints. What experience have you had with splints, do they make a difference? Apart from his legs Finley is also a very bright little sweet chap. Where are you from? Botox has also been mentioned to us which I'm not too keen on to be honest, have to see what the next appointment with the paediatrician brings.

    This forum seems to be a great place to find some support

    Nic x
  • sarahprattensarahpratten Member Posts: 83 Courageous
    Dear Hayley,

    Well - you're in the right place - we have all been through it one way or another.

    My son Will is almost 9 and we still don't have a diagnosis, although he has just had another round of genetic testing. Many of his problems are similar to children with CP, although unlike Harry he has low muscle tone.

    In terms of therapies, don't forget the health service professionals generally only recommend therapies that are available on the NHS, but there are some good "alternative" therapies available that may be better for Harry and are certainly worth looking into - I think Scope has a list. I know this will bombard you with more information, but it is well worth looking into. I would reccommend you look at Advance - they teach neurorespiratory exercises and provide hyperbaric oxygen. They have a good web-site: www.advancecentres.com with some short videos and some case histories on the blog.

    I know what you mean about being strong, but don't forget you don't have to be strong all of the time. It is okay to sit down and have a good cry now and then! And if you feel you need more support, you can always have a chat to your doctor to see if it can be arranged for you to see a counsellor.

    Very best wishes,
    Sarah
  • harrysmumhharrysmumh Member Posts: 6
    Thank you for your message Sarah.
    I will definately have a look at that site. Late lastnight I spoke to my boyfriend properly about how Im feeling(I think writing things down made me realise how much I did need to get off my chest)and Im feeling a lot better for it.
    I cant imagine how you must feel,not having a diagnosis,as although it isnt nice for your child to have cp,at least you know what the problem is,and can then move down the route of trying to improve things. I hope you get some answers soon.
    Hayley xox
  • harrysmumhharrysmumh Member Posts: 6
    Hi Nik.

    Harry has had two sets of splints so far,he has picked a blue football design both times. :) In my opinion the splints definately make a difference. We have had quite a few problems with the hospitals,and Between Harrys two sets,we had a gap of over2months where he was out of splints completely,and he tightened up an awful lot. We have also gotten some piedro boots this week,to wear with the splints,but it will take a while for him2walk in them properly.

    Does finley have to have his legs in cast,or be cast for splints?! Harry hasnt had to be in casts yet,but we have been told it will definately be needed in the future. We are extremely lucky as Harrys cp is quite "mild". It only affects his legs,but his left arm comes up when he is walking and we have been told it is just a reaction to his balance problems. This is now becoming more noticeable.so we will need2have this looked at again. We met a specialist a few weeks ago,regarding botox,but we left knowing less than we had already found out ourselves(the net can be a blessing and a curse!!). We now also think that we will not go ahead with the treatment as they have offered us a slot in feb,meaning Harry will have to take time out of his pre school&the results may not be worth the possible three weeks in casts. So we are going to see how the next few monts go,&then decide nearer to the time.

    We live in Enfield,North London. Where are you from?! Its nice to be able to communicate with people who are in the same/similar position as yourself. Especially as I dont know anyone else with a child with disabilities.

    Hayley xox
  • staceyharleystaceyharley Member Posts: 6
    [font="Arial Narrow"][/font][color="#FF0000"][/color]
    Hi i have just been reading some of the things you have wrote and thought would sign up for this forum, im 22 and from west midlands and my 2 and a half year old daughter was diagnosed with cerebral palsy 2 weeks ago, and just like harrysmumh i have been back and forth to birmingham childrens hospital for the last 14 months expressing my concerns and seeing different docs when her diagnosis has only just been made (long story wont go into it)
    Any way im waiting to see physio therapists and pediatricians ect now but i was just wondering if anyone could answer a question for me?
    My daughter has spastic diplegia and cannot walk her feet are bent which is classed as rolling inwards..(does anyone elses children have the same prob?)
    she was misdiagnosed and the docs said she had flat feet, so they put her in splints, she had them on for about 4 or 5 days and could hardly get around with them on so i took them off, but since she can hardly do anything anyway such as crawl, get up on the sofa climb the stairs etc which are all things she could do before, her legs seem so stiff and weak at the same time and because i have not been able to speak to any specialists i dont no if there could be anything else wrong as i no that cerebral palsy is not progressive... any advice would be great thanks
    stacey x
  • CarenCaren Member Posts: 5
    Hi,

    I am also new to this site, having on occasion used another more general site, and don't know why I never thought of this one! Reading your stories, is almost like reading my own! I have a 2 yr old daughter with CP (PVL specifically). I think by the sounds of it she is probably a bit more severe (although difficult to quantify as their needs are all so variable) than your little ones, but also has an amazing loving personality, loved by all she meets! I have been 'glued' to my seat reading all the posts tonight as can relate to so much that is said, and think this is going to be a great place to get a lot of support and advice!

    Hayley, do you have portage services locally? Although our therapists have been wonderful, we have found the greatest support from portage and our local one runs a parent support group, through which we have met families and children with special needs, not just CP. As said before I think there is a lot out there for children with CP and other conditions, but we are not always told about them, and I suppose that's why sites like this are wonderful!

    Take care
    Caren xx :rolleyes:
  • harrysmumhharrysmumh Member Posts: 6
    Im so pleased that there has been response from so many people,I wasnt expecting much feedback.

    Stacey,
    Im so sorry you have been through similar problems to myself,with regards to getting a diagnosis,its such a shame but it doesnt seem to be as rare as I had believed. The process is extremely draining and stressful. As far as cp being progressive,Im sure it isnt,but the tightness can get worse if nothing is being done,such as using splints/physio etc. I am assuming that your daughter may not have been having the intensity of these things that she may have needed,if she hadnt been diagnosed?! This was the same with Harry,although now he can climb alot better than before&his balance while walking has improved slightly. Harry's toes turn outwards,which we were told was less common than the feet turning inwards so I cant comment on that question,but Im sure some others may be able to. But I would say,that if you are feeling as though your daughters problema are worsening or you are worried in anyway,go back to your doctors,as I did many times. Once you have a physio&pediatrition,you should be able to contact them rather than going through your doctors,which will give you quicker results.
    I really hope things improve for you and your daughter. Keep in touch if you would like to?!
    Hayley xox

    Caren,
    I was so pleased when I read your message,as I had absolutely no idea about Portage,I have looked it up online and there is a service in my area,so I am going to call them tomorrow and get some more information. I have been so set on sorting out all of the medical problems and making sure everything is being done for Harry,that I havnt thought about myself or trying to find groups etc,until I signed up on here a few nights ago. So thank you for bringing this to my attention.

    I have already gotten a lot of information,and just general comfort in hearing other peoples situations(in such a short time). Like I said,although you know youre not the only person with a child with cp,or any other problems,it can sometimes feel that way when you dont have contact with parents or children dealing with cp!!
    This is definately going to be a good place to find any info or support I may need.
    Hayley xox
  • harrysmumhharrysmumh Member Posts: 6
    Hi Stacey,

    I thought that may have been the reason for your daughters tightness getting worse,but its great that you have now started physio,it really has made a major difference to Harry.

    I have had some similar problems with taking harry to play areas and playgroup. We attend a stay and play session every week at a school,and he is fitting in well!! He falls alot if he tries to run about with the other children,one thing he doesnt acually think he cant do is run!! But now I have accepted that there are certain things,only physically,that Harry cant do as well as other children,but I do prefer him to be in a mainstream school. He is starting pre-school there in January,he cant wait. We also go to ball pool and soft play areas with friends and their children,and Harry now realises which parts he can go in2&which he cant(although it is heart breaking when friends children,much younger than Harry can do so much more)!! He gets left out sometimes because he cant do as much&isnt as fast,so I just go in with him&make sure he has as much fun as he possibly can!! We do have problems in all these places,but I think its better for them to have interaction with other children,than to be stuck with us boring adults all the time!! As far as places to meet other children with disabilities,this is what I am currently looking in to,as I would like for Harry to actually meet other children,similar to himself.

    The scan can be daunting,I was so nervous,my mum came with me as my boyfriend had just started a new job and couldnt take that particular day off,my aunt&cousin also came&we were all in a room with Harry trying to keep him occupied as he knew something was going on(&they were keeping me occupied,so i didnt worry so much,way2many ppl i know,but we know them on the ward as I had Harry there). They gave him two medicines orally,which made him very sleepy,they connected a heart monitor onto Harrys toe(just to keep an eye,as they are asleep),then we took him2the mri room. You can sit in the room next to your child if you want to(with earphones and a lead coat on),or I chose to sit with the scanners and wach him through a window(mostly because I wanted to listen to what they said,ask questions and wach the scan on the screen). They look so small in the machine,but it is completely safe. Once the scan is over you just have to wait until they are awake,then can go home. Harry was groggy all evening,went to bed early&woke up back to normal. The results really only confirmed the cp&what type. But honestly,there is nothing to worry about. I know thats easier said than done,but you always expect the worse. Just try to have someone there,to support you and help keep your little one calm. Make the whole hospital experience as "fun" as possible for her, Fave toy, play games etc. Then the next day a treat,for being so brave(Harry picked a happy meal&
  • staceyharleystaceyharley Member Posts: 6
    hi harrysmumh, i have now seen a physio therapist and the fact that my daughter has been having problems for over a year with no treatment looks like the cause of her mobility getting worse, she has gone backwards and now it will take months for her to regain all the strenght in her legs and back to how it was before, i just hope that we can get some proper help now she's been diagnosed.
    I asked the physio if there was anywhere i could take my daughter such as play group where there are other children with disabilities , she said that she should go to a normal play group like everyone else, but the thing is i have took her to these as well as the whacky warehouses during toddler time and with other children running around and and pulling my daughter about, can sometimes do more harm than good...i no kids like to play but my daughter looks like any normal kid but other children do not realise that she cannot crawl stabily or balance on her own and tend to pull her about a bit to play so i was wondering if anyone new of any websites which tells you about special toddler groups etc?
    thanks for the info so far...the worse part of the brain scan has got to come yet...dreading it !!! :(
    Stacey x
  • traceyb113traceyb113 Member Posts: 2
    Hi Hayley,
    I read your post today, and was touched by your honesty and obvious love for your son.
    He sounds like a fantastic little boy.
    I really relate as my son Chris has Spastic Diplegia and was diagnosed just before his 2nd birthday.
    Every morning when I wake up, sometimes I can accept the disability and sometimes I find it very hard, and still get angry that he has to put up with it. (He is now 5).
    Chris is also a driven, determined little boy - brimming with character and cheekiness.
    We took Chris to CPPC in Bedford when he was 2, where they do very intensive physio.
    They managed to get him walking, whereas the NHS were nowhere near as hopeful for him. Polish and other Eastern European methods can be very effective - no matter what NHS doctors say. I think there could be some Professional Pride problems there perhaps!
    Chris walked just before his 3rd birthday, and I cried with disbelief when it happened.
    Now he still uses his Kaye-Walker some of the time, and he can manage to walk around for a while before his legs get tired. I know we'll need a Wheelchair at some point but I know I'll be given the strength to deal with that when the time comes.
    I find that keeping it in the day really helps me, and every time I find myself projecting and going down the "What if" route, I do something to get me back into the moment (maybe sharing my feelings with a friend, walking in the park etc). It doesn't make the pain go away, but somehow it seems to help a bit. I even do gratitude lists too (though sometimes through gritted teeth at the start!).
    Chris is now at mainstream school with a statement, and is making lots of friends. Watching him grow in his independence and hold his own around his brother and sister is wonderful.
    Keep sharing your feelings, you're not alone. For me, sharing is half the battle, then I can be there for Chris and my other children too.

    Tracey
    x



  • staceyharleystaceyharley Member Posts: 6
    [quote name='harrysmumh' date='Nov 10 2009, 03:58 PM' post='33917']
    Hi Stacey,

    I thought that may have been the reason for your daughters tightness getting worse,but its great that you have now started physio,it really has made a major difference to Harry.

    I have had some similar problems with taking harry to play areas and playgroup. We attend a stay and play session every week at a school,and he is fitting in well!! He falls alot if he tries to run about with the other children,one thing he doesnt acually think he cant do is run!! But now I have accepted that there are certain things,only physically,that Harry cant do as well as other children,but I do prefer him to be in a mainstream school. He is starting pre-school there in January,he cant wait. We also go to ball pool and soft play areas with friends and their children,and Harry now realises which parts he can go in2&which he cant(although it is heart breaking when friends children,much younger than Harry can do so much more)!! He gets left out sometimes because he cant do as much&isnt as fast,so I just go in with him&make sure he has as much fun as he possibly can!! We do have problems in all these places,but I think its better for them to have interaction with other children,than to be stuck with us boring adults all the time!! As far as places to meet other children with disabilities,this is what I am currently looking in to,as I would like for Harry to actually meet other children,similar to himself.

    The scan can be daunting,I was so nervous,my mum came with me as my boyfriend had just started a new job and couldnt take that particular day off,my aunt&cousin also came&we were all in a room with Harry trying to keep him occupied as he knew something was going on(&they were keeping me occupied,so i didnt worry so much,way2many ppl i know,but we know them on the ward as I had Harry there). They gave him two medicines orally,which made him very sleepy,they connected a heart monitor onto Harrys toe(just to keep an eye,as they are asleep),then we took him2the mri room. You can sit in the room next to your child if you want to(with earphones and a lead coat on),or I chose to sit with the scanners and wach him through a window(mostly because I wanted to listen to what they said,ask questions and wach the scan on the screen). They look so small in the machine,but it is completely safe. Once the scan is over you just have to wait until they are awake,then can go home. Harry was groggy all evening,went to bed early&woke up back to normal. The results really only confirmed the cp&what type. But honestly,there is nothing to worry about. I know thats easier said than done,but you always expect the worse. Just try to have someone there,to support you and help keep your little one calm. Make the whole hospital experience as "fun" as possible for her, Fave toy, play games etc. Then the next day a treat,for being so brave(Harry picked a happy meal&
  • staceyharleystaceyharley Member Posts: 6
    Hi Harrysmumh,
    Thanks for your reply,its great that your son is doing do well... yes i hope physio helps, they showed me a couple of exercises to do, its going to be really hard at the minute though...she cannot even sit up alone without holding herself up anymore so i just hope that the exercises make a difference.

    I think i will take her to a normal play group when she is more stable sitting up and crawling a bit more.
    I also was under the impression that they would have given my daughter an injection for the sedation as that what it says on my letter? perhaps it may be different in different areas of the country i dont no but i hope an oral medicine is available as its obviously less distressing!
    Well i dont really have much else to say im sure ill think of something in the near future though lol!
    This sites great as well by the way to communicate with other people who are having similar problems.
    Thanks for the relpy!!
    Stacey x
  • staceyharleystaceyharley Member Posts: 6
    hi tracey, you mentioned that your son has a kaye walker....was just wondering where you got it from and did the physio's give it to you when they thought he was at a stage to learn to walk?
    My daughters got spastic diplegia and not at that walking stage yet but ive seen them on the net and didnt know where people had them from?
    Thanks Stacey x
  • nicxnicx Member Posts: 4
    [quote name='staceyharley' date='Nov 12 2009, 11:24 AM' post='33939']
    hi tracey, you mentioned that your son has a kaye walker....was just wondering where you got it from and did the physio's give it to you when they thought he was at a stage to learn to walk?
    My daughters got spastic diplegia and not at that walking stage yet but ive seen them on the net and didnt know where people had them from?
    Thanks Stacey x
    [/quote]


    Hi Stacey,

    our physio ordered a Kaye walker for Finley, he tried it but it was the wrong one for him as he hasn't got enough upper body strength yet and simply couldn't hold himself up in it. They looked into a different walker for him now. Unfortunately ordering all the special equipment always takes ages.

    What a shame that we all can't just get together with our children.
    Nic x
  • nicxnicx Member Posts: 4
    [quote name='harrysmumh' date='Nov 5 2009, 05:16 PM' post='33894']
    Hi Nik.

    Harry has had two sets of splints so far,he has picked a blue football design both times. :) In my opinion the splints definately make a difference. We have had quite a few problems with the hospitals,and Between Harrys two sets,we had a gap of over2months where he was out of splints completely,and he tightened up an awful lot. We have also gotten some piedro boots this week,to wear with the splints,but it will take a while for him2walk in them properly.

    Does finley have to have his legs in cast,or be cast for splints?! Harry hasnt had to be in casts yet,but we have been told it will definately be needed in the future. We are extremely lucky as Harrys cp is quite "mild". It only affects his legs,but his left arm comes up when he is walking and we have been told it is just a reaction to his balance problems. This is now becoming more noticeable.so we will need2have this looked at again. We met a specialist a few weeks ago,regarding botox,but we left knowing less than we had already found out ourselves(the net can be a blessing and a curse!!). We now also think that we will not go ahead with the treatment as they have offered us a slot in feb,meaning Harry will have to take time out of his pre school&the results may not be worth the possible three weeks in casts. So we are going to see how the next few monts go,&then decide nearer to the time.

    We live in Enfield,North London. Where are you from?! Its nice to be able to communicate with people who are in the same/similar position as yourself. Especially as I dont know anyone else with a child with disabilities.

    Hayley xox

    Hi Haley,
    how old was Harry when he started walking? Finley is 2 now and only walks a little bit when I hold him but he isn't too keen on it. His casts don't seem to bother him, thank god, he is getting serial casting before he gets his splints, so they will be on for about 6 weeks I suppose. At the moment Finley seems to get very easily frustrated when he is stuck in his buggy whilst his sister and brother are running around outside. In the house he gets around easily, usually bunny hopping, he used to be able to climb up the stairs but for some reason doesn't want to do it anymore. He had a growth spurt recently and in my opinion his muscle tone has gone worse, the physio said it's normal when they grow .
    The lady from Scope was here yesterday, I hoped to find a playgroup or parent group for cp children round here (Catterick/North Yorkshire) but unfortunately there doesn;t seem to be anything nearby.

    Just good that this forum exists :-)

    Nic x
  • nicxnicx Member Posts: 4
    [quote name='staceyharley' date='Nov 10 2009, 11:33 AM' post='33916']
    hi harrysmumh, i have now seen a physio therapist and the fact that my daughter has been having problems for over a year with no treatment looks like the cause of her mobility getting worse, she has gone backwards and now it will take months for her to regain all the strenght in her legs and back to how it was before, i just hope that we can get some proper help now she's been diagnosed.
    I asked the physio if there was anywhere i could take my daughter such as play group where there are other children with disabilities , she said that she should go to a normal play group like everyone else, but the thing is i have took her to these as well as the whacky warehouses during toddler time and with other children running around and and pulling my daughter about, can sometimes do more harm than good...i no kids like to play but my daughter looks like any normal kid but other children do not realise that she cannot crawl stabily or balance on her own and tend to pull her about a bit to play so i was wondering if anyone new of any websites which tells you about special toddler groups etc?
    thanks for the info so far...the worse part of the brain scan has got to come yet...dreading it !!! :(
    Stacey x
    [/quote]
    Hi stacey,

    I've only just read your concens about the MRI scan. I was also dreading it and thought there is no way they can get Finley to keep still for the anaesthatic injection but they put a local anaestathic gel on hs hands, wrapped them up so it stays on and wen the time came for the injection he didn't feel a thing and went to sleep on my arm within seconds.
    Have you already got a date for the scan?

    Nic x
  • GuestGuest Member Posts: 1,968
    It takes a long time to get your head around it all. We are two years on from the intital diagnosis and I am only now adjusting to life with my daughter's CP.

    For those of you who have mentioned botox I know how daunting it it and ultimately your decision. However from my personal experience, Chloe had botox about three weeks ago now and the difference already is massive! I was really unsure about it also but it has been extremely beneficial for us.

    The Kaye walker will be from your physio. Chloe cannot walk or even stand unaided yet but she uses a Kaye walker in nursery and is able to get around with the other children quite happily in it.

    Gemma x
  • staceyharleystaceyharley Member Posts: 6
    Nic... Yes my daughters scan is the on 9th december, waited 8 weeks for the appointment.
    I was just wondering about the anasthetic because it doesnt mention how they do it on the letter they sent me.
    I'd just like to ask another question too lol im full of them!!...Does anyone elses children have
    these like gazing spells? my daughter just stairs into space from anythin from 10seconds to a minute.. i talk to her and she just ignores me untill she 'comes out of it'.
    I dont know whether they are abscent seizures or what.. just wondered if any one had the same experience with their children?
    Thanks for reading again!
    Stacey x
  • harrysmumhharrysmumh Member Posts: 6
    Its great that there are so many of us on this thread,it really is nice to hear everyone elses experiences,and see that people are getting some answers to questions they have.

    Nic,
    Harry took a few steps alone when he was around 11months,then stopped till after his 1st birthday. he then had stages of taking a few steps then falling and it stayed that way for a while. I first thought something was wrong about 2months after his 1st birthday,and that is where the "fight",to get someone to take notice of my worries started!!! Luckily,Harry does walk unaided,and can sometimes do so for quite some time, depending on how tight he gets. I do realise just how lucky we are,as i know this isnt the case for a lot of other children. He goes through stages of what I call "1step forward,2steps back",he sometimes just insists he cant do something,even when he has done it before,and then takes a long while to get back to the point he was at originally. He also gets extremely frustrated when he has to sit in the pram,when my friends children(ofthen younger),are running around,and not evn using prams anymore. The last few months he has started commenting on the tightness in his legs,so he is becoming more aware of the problems he is facing,which will obviously become more of an issue as he grows older. Also,his frustration is causing him to have extreme temper changes,starting about2months ago,which is hard to deal with as he is a big boy,and I already have a trapped nerve in my back from lifting him!!

    It really is a shame that we all arent closer to eachother,would be lovely to meet all the parents,and the amazing children we all have!!

    Hayley xox
  • paucatpaucat Member Posts: 1
    hi haley,
    i was reading your post, as ive just joined in the last 5 mins, to cut a very long story short, my son will be 6 in feb, after a difficult birth etc, we were told he has a very rare genetic dysorder, beckwith weidermann syndrome, that was bad enough, then we went on because he looked as if he had black eyes, we found out he had a brain abnormalitiy another extremely rare one, his plumbing in his brain was back to front his blood drained down the front of his face and not down the back as a normal person, due to a blockage at the base of his kneck and skull, any way he started to develope and had problems he didnt walk until he was over 2yrs and he didnt speak either, everything was put down to his conditions, we will now jump forward a few very estremly difficult years,he now had a wheel chair as he couldnt walk far,pedro boots they tried splints etc, was at a special needs school,and tipie toed walked etc, couldnt talk, now signing and using a talker,but now starting to use words,found out years back he had slight brain damage due to hpoglysemia unniticed at birth,which if i hadnt noticed my son would have been dead, wellhe has been plodding along with all his difficulties,and making good progress,then we were told about botox injections in his legs, he was access,and he got his injections on 23rd and it went well, goes back in jan for his casting,but it wasnt till i was given a blooklet on treating children with cp with botox , so many things stared to go ping, and i asked the consultant does paul have cp, and she stood and looked at me hesitated then said yes it all comes under cp, doing more reaserch going by what the doc said it is spastic diplegia, to be honest im not going to stress out over things as it only really names what has been wrong with his legs, but would i have be told if i didnt start asking questions or is everything going to be kept getting put down to his "other conditions" im sorry aout going on once starting i just cant stop, but i really want to know who else has had the botox done to their kids with casting and what has the outcomes been and thier opinions, given everythin though regardless to how hard things ahve been and they have been difficult, as he has problems sleeping as well i wouldnt change him for the world he is one cheeky, funny strong mimded individual, who has just had one more medical name added to his list michellexx
  • WicksyWicksy Member Posts: 1
    Hello everybody

    I am new here, my 2 1/2 year old daughter has just been diagnosed with CP. She seems to have it very mildly, and can walk just holding onto my finger. (and has taken a couple of steps on her own) She can jump up and down if holding onto something. She only has spasticity in her lower legs, her upper body seems to be unaffected as she can eat with a knife and fork, drink from a glass with no problem. She talks for England and is far more advanced than her sisters were at her age.

    I just wanted to say thank heavens for this forum and everyone sharing their and their children s experiences, It has been an enormous help to find that there are others in my and my daughters position willing to help others.

    Neil
  • shanieharrysmumshanieharrysmum Member Posts: 2
    hi to all you wonderful parents,reading all your posts just touches my heart so much,i wanted to register then ask for some parental advice on my son harry,hes my 3rd child and is 15months old ,was 2wks prem no probs at birth,but i did notice a eye squint,then noticed harry wasnt even trying to crawl or very flexible in his knees he was late to sit up at 11months old,and now drags his legs behind him like hes got a tail(commando crawling)ive been told and lots of rolling,he doesnt talk either well screams out alot and always moaning,hes started pointing and babbles alot and does say what we can make out "all gone,nanny,ba ba,! no mum or dad like my girls did,his ankles are stiff and from knees down seem tight too,when you try too walk him along he has no balance at all he cant even hold himself in standing position hed just fall,and on tiptoes completly,his memory is great and he seems to understand what we say to him but just communicates back by squealing at us! please could you let me know your opinions!! my doctor has mentioned an mri when harry is 18months old and did mention spastic diplegia but said we have to wait!!! i feel like ive been smacked in the face and in shock,,but after reading other posts it has helped to think were not alone!! shaniex
  • traceyb113traceyb113 Member Posts: 2
    Hi Stacey,
    Sorry it has taken me a long while to reply, I don't get onto this forum very often. Being a mum of 3 seems to sweep me away for weeks at a time!
    We were given Chris's Kaye walker on long-term loan from our local Special Needs Centre (White Lodge Centre at Chertsey), this is where he regularly visited his physiotherapist until he started at mainstream school last September.
    We have still got a frame from there, and they seem ok about it at the moment. I don't think you will need to buy one, your physio should be able to source one for you.
    Tracey
    x
  • JohnSuddesJohnSuddes Member Posts: 1
    Hi Shainie

    This sounds very much like our little boy who is now just over 3 years old. We have just received his diagnosis this week after an MRI revealed Spastic Diplegia. It had been suspected for the last 4 months since our last visit to the hospital when a different doctor mentioned it. We then had to wai 4 months for the scan!!! Up until that time i had never entered our heads and the previous doctors had not mentioned it either.
    Rio has had problems from birth due to his parents both being drug users and had to spend time in SCBU when he was born as he was withdrawing from Heroin addiction, therefore he has always been playing catch up with his development and we had always just put it down to that. He also had a squint in both eyes and had an op to correct this at 10 months old the op was not 100% succesful however there is a huge improvement and he now wears glasses for his eyesight and to help straighten his eyes. Like your baby Rio did not sit up unaided until he was 10 months old and did not make any effort to crawl. When he finally did crawl it was commando style dragging his legs behind him however he did have very strong legs and was always trying to jump if you hel both of his hands he never tried to make stepping movements he jump everywhere lol
    His attention span was non existant and has a foul temper, he had very poor fine motor skills. He has a portage worker now that comes to the house and works on his motor skills and tries to improve hiw attention which I have to say seems to be working. He sees speah and language although as yet they are only monitoring him not really working with him but his speech is improving slowly he can say a number of words now and with effort can say two words together like 'yes please' 'more please'. He took his first stes at 22 month 3 days after our first visit to hospital about his not walking, he took 4 steps then did nothing for a while then tok 8 stpes then nothing for months. He is walking now but is very unsteady and falls all the time. He has Piedro boots which at first were like miracle boots and he was up on his feet straight away but now he walks just the same in normal shoes the boots were meant to correct very flat feet but don't seem to have had any impact on that at all. Anyway what I was going to say to you before my long rant was your child sounds very similar to mine and although no two kids are the same I am sure it will come it just takes them a little longer and a bit more effort. Rio is only mildly affected and I am devasted about that but he is happy and healthy and a joy to be around (most of the time) :rolleyes:
  • shanieharrysmumshanieharrysmum Member Posts: 2
    Hi many thanks for replying to me,its been nice to hear such simmalarities with rio an harry,harrys mri scan cant be done until 18months plus old and hes only 15mths so its just a waiting game at the moment,were suppose to be having the squint op on 10th march but our consultant for the legs says the consultant for the eyes may want to wait to see what the diagnosis is before doing the squint op,,,not sure we"ll find out at pre op appt!! thanks again. shanie
  • katiemfletcherkatiemfletcher Member Posts: 1
    hi there
    i am also a 24 year old mother, with a 2 year old who has been diagnosed with cp spastic diplegia.
    at the moment only her lower body seems to be affected..hips, legs and ankles. she can walk in her piedro boots but often falls, with her legs collapsing beneath her. when out of the house she is not so confident and needs to hold onto someone, or i put her in her reigns and keep her balance by holding them real tight.
    she is refusing to wear night splints anymore, so now without her shoes on she is fully on tiptoes again and has terrible balance.

    this website and forum has been so much help, just reading about people in similar situations, and people feeling the same emotions, makes me feel like im not the only one!

    i am currently moving house from cornwall to the midlands (where im originally from) as i cant settle here and feel very unhappy, even though all my family are here). my daughter is very close to her grandparents here, so i am worried about how this will affect her? but i feel the medical care and attention she will get in the midlands will be better than in cornwall as i know there is more available. i am hoping to get her into mainstream nursery. can anyone offer any advice?

    katie xx
  • AustinsmumAustinsmum Member Posts: 2

    Hi All,

    Our little boy Austin was diagnosed with cp spastic diplegia just after Christmas.He will be 2 in April.It all semed to be fairly quick from raising my concerns, yet again, with the health visitor regarding his not walking to hospital appointments and all sorts of tests, including an MRI. They gave Austin his sedative by mouth for his MRI just like calpol and he was out within minutes.His actual diagnosis was PVL.He was already attending a regular nursery as I returned to work full time when he was 10 months and they have been really great.His Physio is done at home and at nursery.He had his casts done for his splints last week and he gets those on the 15th.He chose a pink pattern from the chart but we decided that cars would be a better option!!! Bless.I am actually looking forward to him getting his splints as I know that will be the first step in getting him up and walking,like other mums I worry that he feels left out when all the other kids are running (even walking) around.He is a beutiful,bright little boy and always makes me smile.I would love him to meet other kids with similar problems just so that he knows he is not the only one but there are no groups locally.Maybe one day! Anyway I am so glad that I decided to have a look on here today,it is nice to hear other peoples experiences and gives a good insight in the Austins future.

    Emma x
  • AustinsmumAustinsmum Member Posts: 2
    Hi All, Forgot to say that we are in Warwickshire, just outside Leamington Spa, if there is anyone else local it would be nice!

    Emma x
  • edoveyedovey Member Posts: 10 Listener
    Hi Austinsmum,

    My son has just been diagnosed with mild diplegia. I don't know any other child with this condition, but I'm not fat from you, I live near Stratford on Avon. My son Oscar is 3 years old, talking and learning really well. He can walk and kind of run, but he is unstable and falls frequently. He also walks on tiptoes on his left foot constantly. W eshould be having a cast soon, and the doctors were also mentioning botox. He had a CT scan earlier this year which didn't show anything, but apparently a mild case can go undetected. Feeling both relieved and shocked at the moment.
    How is Austin getting on?

    Liz
  • PennyBPennyB Member Posts: 4
    Hi,
    Though at present I am living in Africa, I sent my son to a Montessori Pre-school (here in Swaziland) and the results were/are nothing short of miraculous. The Montessori method was originally developed for CP sufferes in Hungary by a Proff. Montessori and if i hadnt seen the results for myself i would not have believed it.
    I understand there is a good Montessori School somewhere near Leamington so before you decide to send your little one into Pre-school go n have a look. Penny B.
  • curliesue2curliesue2 Member Posts: 6
    Hi all
    I have a two and a half year old daughter who has spastic diplegia. She cannot stand or walk at all, slightly affected left arm and delayed speech. She is my 3rd child and i noticed something was't right with her legs when she was 10 months prior to this she could'nt sit properly,very quiet as a baby and did'nt really try to do much as a baby. It took me two vists to health visitors,doctors, two visits to local hospital back to the doctors and asking for a refeferal to Birmingham Childrens Hospital for them to tell me staright away what was wrong with her. Its been nearly a year since her diagnosis and i feel everythings been slow. She wears splints of a day time and splints and gaitors of a night time.

    It was such a shock when we had her diagnosis as i never even thought of cerebral palsy. Me and my partner took it quiet bad and just could'nt get our heads round why she has it as there was no problems with my pregnancy or when i had her. The doctor said unfortunatley "god only knows why she has it".

    I find it hard as my partner works longs hours and comes home when all the kids are in bed. My other children are 7 and 5. I did get diagnosed with depression in December but i've tried to beat it on my own.

    Shes on the waiting list for Botox and has just had a walking frame and absolutley loves it. She keeps telling us that shes walking. It just makes your heart melt. She sees physio once a month, a play worker every other week and a speech therapist once a month. It is a bit overwhelming at times with all the appointments and she does get really distressed when going to hospitals but i keep telling her it is for er own good.

    She is due to start nursery in September which i must admit i have been worrying myself to death over mainly how she was going to get around and how other children are going to react to her. I did talk to another mum who has a daughter with hemi cp. Although no two people with cp are the same it can help talking, i got little bits of helpful information from her.

    I have a beautiful little girl who is extremley happy and a joy to be around and i would'nt change her for the world xxxx
  • jenniricejennirice Member Posts: 2
    Hi. I have only just joined the forum and was reassured to read so many similar stories. I have a 9 year old daughter with CP spastic diplegia. She wasnt diagnosed until almost 7 as she had excelled in school and only suffered with her legs, which began to deteriate rapidly. Now at nine they are still unsure of her diagnosis beleiving there may be a genetic limp as i have suffered with my legs from a child and my father cant walk, (though niether of us ever had a diagnosis) She has been through botox, casts, calipers and 3 different types of splint and things are still deteriorating. They are now looking at medication which i am very reluctant about. I have not had support from any other people other than the medical staff involved and no genetic research or councellor. The school she attends are not very supportivr either ( only today did she get shouted at for not keeping up with the others walking to the local swimming pool!) It can be very difficult at times as, because she is bright and doesnt display any other symptoms, people do not realise what she goes through and she has become quite an emotional little girl. Any help, advice support groups would be greatly received. Thanks. I hope the treatment and support you have received has gone well over the last few years.
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