24year Old Mum,of A2year Old Who Has Spastic Diplegia Cp. — Scope | Disability forum
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24year Old Mum,of A2year Old Who Has Spastic Diplegia Cp.

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Guest Member Posts: 1,968
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
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Comments

  • harrysmumh
    harrysmumh 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
  • nicx
    nicx 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
  • sarahpratten
    sarahpratten Member Posts: 35 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
  • harrysmumh
    harrysmumh 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
  • harrysmumh
    harrysmumh 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
  • staceyharley
    staceyharley 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
  • Caren
    Caren 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:
  • harrysmumh
    harrysmumh 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
  • harrysmumh
    harrysmumh 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&
  • staceyharley
    staceyharley 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
  • traceyb113
    traceyb113 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



  • staceyharley
    staceyharley 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&
  • staceyharley
    staceyharley 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
  • staceyharley
    staceyharley 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
  • nicx
    nicx 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
  • nicx
    nicx 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
  • nicx
    nicx 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
  • Guest
    Guest 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
  • staceyharley
    staceyharley 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
  • harrysmumh
    harrysmumh 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

Brightness

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