Just been diganosed with quad cp — Scope | Disability forum
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Just been diganosed with quad cp

sarahlou5678
sarahlou5678 Member Posts: 13
Hi
I have a 10 month old son and we been told he has quad cp! , I knew he had cerebral palsy ,He stopped breathing when i was in labour so i had a emergency c section and they got him out quick, He had a cool cap on him to reduce further brain damage, Its nice to find places like this because it does make u feel a bit alone, Hope to hear from somebody soon x
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Comments

  • gigglersmum
    gigglersmum Member Posts: 7 Listener
    Hi Sarahlou,
    I'm also mother to a baby with quad cp - he is nearly 11 months old now. We've known since he was born that he would have problems. He suffered significant brain damage at birth and it became apparent over the first few months that all his limbs were affected. I found it really hard in the early months but life has got a lot better since then, not least because our son is amazing, gorgeous and giggly and works so hard to learn skills that are incredibly difficult for him. He amazes me every single day. One thing that has helped me enormously has been to meet other parents who are in a similar situation. I've found many new friends through the physio, hydrotherapy and other activities that we do. I hope you find some support in your area too. Have you seen the CP thread on Mumsnet? That is also a good place for advice and company. x
  • Bongyorno
    Bongyorno Member Posts: 9
    Dear Sarahlou,

    This site is a really good forum for parents to talk about their feelings, struggles, difficulties. Also good to find new therapies, what you maybe havent heard about before. The really important thing is, to start therapy as soon as you can. I'm working as a conductor, developing children with cerebral palsy through conductive education.

    Conductive Education is a learning process not a therapy/treatment. An educational philosophy not allowing a child to be inactive, negative or uninvolved in a normal life style/ solutions to problems in life and living. Con. Ed. embraces learning & dev.of movement, speech & mental ability, based on the theory that motor disabled children learn in the same way as their peers. No matter how brain damaged a child can learn.

    there are a lot of places in the UK, where you can find COnductive Education centres, like Step and Learn in Kent.
    if you have any question, dont hesitate to ask.:)
  • imogen37
    imogen37 Member Posts: 61 Listener
    Hi

    My son Marten is 2 and has severe spastic quad CP. It's quite a shock being told your child has CP. What treatment, therapy or prognosis have they offered for your son?

    We are doing a home-based therapy called Advanced Biomechanical Rehabilitation (ABR) and Marten has progressed loads since we started. His spastic muscle spasms have now stopped, he's not in any pain and he has been off all drugs for 7 months!

    Before that we had intensive physio for 6 months from the NHS and the usual assortment of drugs, but with no progress to show for it! His spasms got stronger and stiffness increased; he used to be up all night crying (and all day sometimes too)!

    So, look around and don't rely just on NHS treatment. Even the NHS Choices video admits that they have very little to offer at the severe end of the spectrum.

    We've been working (we're volunteers) with the people in Belgium who first helpd us to bring Marten's treatment to the UK so that other children can benefit. This will happen in March. www.abrscotland.com will tell you about the therapy we are doing.

    Have a look there's a lot of information on the site.My very best wishes.

  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Thank you for your reply!!!! i will have a look what you suggest, yeh its so upsetting when they say yes your chlid has cp , Hope to hear from u all soon xxx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Hello lovely

    Our son Tom has quad CP and was also diagnosed at 10/11 months although we didn't know at all that he had any form of CP or problem - he had been diagnosed with colic (!? ha ha) which went no way at all to explaining all the problems he was having in his first 10 months. He is a twin and although they were born 2 months early by emergency c-section (I developed pre-eclampsia and his sister Iris was suffering big dips in her heartbeat) Tom did not appear to have suffered any ill effects, was breathing fine, has normal ultrasound cranial scans and was sent home after a month as a fit and healthy baby. Iris ironically is fine and developing normally.

    Now, at 2 and a half, he's just about to start mainstream playgroup with his sister and is doing fantastically well. His language and cognitive functions are all unaffected but physically he is very stiff and tight and is unable to sit unaided for long, not crawling, standing and walking but only with help.

    Conductive Education has been brilliant for Tom and we feel that much of his positive mental attitude comes from being given the chance to do as much for himself as he can - something that conductive Education really actively encourages. They call it Orthofunction. He's really doing very well - lots to still work on but he's working really hard. He's gobby, strong-willed, temperamental - all perfectly normal for a 2 year old! He's loving, affectionate (he tells me he loves me at least a handful of times every day) and has a lovely relationship with his sisters. He gets very frustrated that he can't do all the things Iris can do but we get him through it.

    He knows he has Cerebral Palsy and that's why he finds movement hard and we've always made sure that he spends times with other kids his age with CP so that he's always got friends who have the same sorts of difficulties. This month he's getting to meet David Stone, the Paralympian cyclist with 4 golds under his belt (he used to be one of our social work students when I worked at a university) because I thought it would do him good to have a sporting hero who has the same problems as him. Tom can cycle a specialist trike and gets a lot of pleasure and is gaining physical strength through cycling.

    I'm here any time if you want to contact me - I'd love to hear from you to find out how things are going.

    Much love

    Maria xxx
  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Hiya!!
    Thanks for your reply!! it is so lovely to hear how Tom is doing!!! it kinds of gives me hope that Lewis can or be albe to do all this when he is older!!, I think its great he goes to mainstream playgroup, Lewis is going to start one in a couple of weeks, to be truthfull i am so worried, it is a main stream but because he cant sit up or anything so he will be on the floor and there is other kids running around, i am worried that he will get stood on, but i guess they should keep a eye on him ,Did Tom when he was younger hate the sound of other kids or babys crying?? Lewis seemed to be scared of the sound of other babys crying and even the sight,I hope he will get used to it, Funny enough u saying about a trike we looked at one in mother care lol, Where did you get it? ,I have never heard of Orthofunction, i will mention that to my physio and the ot when we get one,Where do u get to meet other kids with cp? Its so nice to talk to someome that is going though the same thing as wel, Lewis has a standing frame but waiting for the ot to come out so we can use it.I just want him to be albe to lift his head up, he trys, Did it take Tom ages to lift his head up?? xxxx
  • BeausMum
    BeausMum Member Posts: 1
    Hi, my daughter was diagnosed at 1 with quadriplegia with diper imposed right hemiplegia, but was first seen at 11 months & we knew it was CP but so horrible to hear it officially. My daughter attends a main stream nursery & loves it. The other children adore her & treat her like a doll. Beau has just turned 4 & is doing really well. Her language & cognitive skills are unaffected, it's just physical! However she has just started pulling herself along on her tummy & also does a funny shuffle on her back like a snake. It's amazing how they find their own unique ways of doing things that most take for granted. She still is quite jumpy & hates loud noises. She also used to hate strangers & would scream at anybody who would talk to her but since joining nursery she has really grown up & we can explain to her about things she doesn't like.
    I still get emotional & upset when I think about her condition & the future but then I look at her & realise I'm so blessed as she really is a joy. I've been told that special children are given to special mums. X
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Hi lovely

    Yes, it did take ages for Tom to be able to lift his head - especially when he was lying on the floor on his front. His head didn't flop when he was upright too much but Tom's weakness has always been his trunk rather than his neck so he flopped sideways when he was sitting because his muscles round his sides, back and tummy couldn't keep him upright. He's still not all that strong round that area but it's a work in progress!

    Tom hates any loud noises - he had and still has an exaggerated startle reflex so loud noises made his arms fling out and he'd jump really badly. It's something a lot of kids with CP do - it's to do with retained infantile reflexes due to the brain injury they have.

    The Smart Trike in Mothercare might be a good start but the trike that Tom actually cycles is a specialist disabled trike called a TomCat Tiger. We bought it 2nd hand from a friend but new its about
  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Thank you both for your reply, So much u have to take it etc, We got Lewis in his standing frame today, as long as he could see the tv he was fine lol. We are having someone coming from portage next week, so that wil be intresting,Its just waiting to see how bad he will be, horrible waiting game xxxx
  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Did last message get sent??
  • imogen37
    imogen37 Member Posts: 61 Listener
    Hi

    I wouldn't recommend "wait and see" as a strategy. You'd only see things getting worse. Get into the internet and explore all the options, don't assume that NHS physio would be the best thing for your child. Act now. Standing frame won't do anything for Lewis, he is pretty much tied in so the body does not need to work in being upright.

    After getting the diagnosis we spend a week on the computer, decided to go for Advanced Biomechanical Rehabilitation (www.abrscotland.com) as it offered the best results. We spend 2h a day doing it and thanks to that we are now in a fortunate position of watching our son getting stronger, straighter and more mobile month after month.

    x
  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Hiya!!

    Is the Advanced Bimoechanical Rehablition here in the uk? i have not heard of it but it sounds good!! Anything which helps really!! i will mention it to the physcios as well see if they have heard or if
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Thanks for that lovely positive post Imogen...

    I disagree that a standing frame is useless - I know that the standing is not 'active' but a) your child gets an upright view of the world and can interact with other children in play, b) the legs muscles are getting stretched and the heels brought down to the floor c) the child in the frame can work on playing well with their arms because the legs are secure and they aren't having to concentrate on not falling down or over. It can't be all about therapy all the time - isn't it also about just playing?

    We all ultimately choose what we think is right for OUR child - some people chose ABR, some Conductive Education, some Scotson, some Footsteps or CPPC or Bobath. Some combine a bit of a few different ones. I agree that NHS physio alone doesn't adequately address our kids needs. We all research what is out there, look at Scope to see what they say, scour the Internet for 'miracles' and then realise that there are none - just lots of different places offering hope and (hopefully!) positive results and lots of hard work ahead for our kids. Some people can't afford expensive treatment programmes, some can't travel away from home too far or too often because they have other young kids who also need them. We all do our best for our kids.

    Anyway, I have to go and phone British Gas now as the boiler has packed up and we have 6 cm of snow outside and another 10cm forecast.... Eeek! Talking of snow, there's a fab sledge with a back rest perfect for kids who need a bit of help staying upright (http://www.supertrampdirect.co.uk/colint-davos-120-wooden-sledge-with-back-rest/p647) - I got it because we have twins so it's big enough for 2 backrests and we can fit both of them on but as they get older this one will be Tom's and he can have her own. We're off out tomorrow for some fun in the snow!

    Maria xxxx
  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Thank you!! Maria
    Yeah like u say i think the standing frame will help lewis ,its just nice to see him in a standing position instead of the floor, i will ask about ABC and see what they say, oh i seen on the news today about a boy who had a operation to help him walk, gives me hope just incase lewis does not walk he could have that!! well get his head up first!! thank you all for your advice its so nice to talk to ppl in the same position as me and know what we are going though!!! xx oh does anyone have a swing??? i want one for lewis and wonderd if u knew where i would get on?xx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    There is a cheap baby swing that goes outdoors which we had for a while but I reckon it only fitted the babes for their first 18 months and then their feet scraped on the floor! It's
  • imogen37
    imogen37 Member Posts: 61 Listener
    Hi

    sorry I'm a bit late with a reply, have 3 job interviews this week (2 down, one to go) so all my time has gone to preparing for these.

    Thank you for the link for the sledge!
    Read through my post and I think I could have worded my comments about standing frame better. Yes, it does give the child a different view of the world and lets him use his hands, but does not help with independent standing or walking as it needs core strength and good interabdominal pressure and standing frame does not improve these.

    Maria, you are so right about playing and I am looking forward to the day Marten is able to play independently. You are also right about there being no miracles, just hard work. And it is hard to give enough time to everybody in the family, like yourself we also have twins and Marten's brother has his own needs. He too gets ABR (for chronic lung disease) and has hearing problems. By the way, we can't afford expensive therapies either and constantly fundraise to pay for his treatment; all the other families starting ABR in March are also fundraising.

    Saralou

    ABR will be available in UK from March, the centre for it will be just outside Glasgow. Don't know where you live, but the programme only needs 3 visits per year, so hopefully it would be manageable. If you are otherwise interested and money is an issue(it has been for everybody else), help is available with establishing a fundraising programme. If you go to www.abrscotland.com, you'll get all the details.

    of course mention it to your physio, but I doubt she has heard of it. So far we are the only family in UK doing it. If she is forward thinking and does not care about rules much, she'll tell you to make up your own mind (or something like that). If not, she'll tell you to stick with the physio - NHS pays its staff to promote NHS treatments, just like Vodafone.

    Anyway, hope you both had fun in the snow, not a flake of this white stuff here!

    x


  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Thank you!!! i will mention it anyway, but like u all say them more help the better!! Also another question!! sorry i got a few lol, My little one is really fussy with food and only likes powered food, Has anyone come across this/?xx
  • imogen37
    imogen37 Member Posts: 61 Listener
    Hi

    What do you mean by powered food?

    If you mean pureed or mashed(or something like that) it would be because as part of CP the joints and muscles in the jaw and throat are not aligned properly, so biting, chewing and swallowing is too much of hard work. Also as part of CP the digestive system is weaker and digesting dense food is too hard.

    We are still using realtively soft foods as it's more important that Marten gets enough calories to grow and strenghten his body and renew all the poor quality cells.

    Any questions, just ask - this is why we are all here.
    x
  • sarahlou5678
    sarahlou5678 Member Posts: 13
    Lewis only likes porridge, oat and apple and cheese and brocile powerd food, u mix then with water and milk, what you said makes sense, So i wonder why they are keeping on at me to change his food then, It makes sense what you say, I have tried chicken, mince, veg, smash, savage and nope he wont eat it, , i guess least he is still eating ,just hope they never run out of the powder lol xxx
  • mollymoobarnes
    mollymoobarnes Member Posts: 107
    Tom does have a go at solid food like pizza etc but it rolls round and round in his mouth and he sucks and sucks until he gets as much of it it down as he can and then he ejects all the bits he cant manage but he is happiest eating stuff he doesn't have to process much. He can't manage meat well, although he can do minced meat as long as I break it down with a spoon while I cook it. You can get a cast iron mincer that clamps on the worktop and you can bung any meat through it and turn it into fine mince. I have invented a tomato sauce which has got every veg under the sun (carrot, spinach, sweetcorn, red and yellow pepper, mushroom, onion, garlic, tin of toms, whole tube of tom puree, and a good slug of olive oil. I sweat it all up in a pan with the olive oil for 10 mins on a low heat with the lid on until its all soft, chuck in the tin toms and tomato puree, whizz it up smooth and then serve it with the tiny pasta stars you can get in most supermarkets (I think it's used as soup pasta) with loads of cheese on the top. Tom really likes that. Sometimes I make a cheese sauce too and then mix the tomato sauce with the cheese sauce to make a creamy cheesy version of the tomato pasta. All 3 of my kids like that one. You can whack a tin of finely crumbled tuna in it too. Might be worth a try? It's hard to keep the calorie content high enough for our kids - Tom uses so much energy so even though he eats twice what his fussy twin sister eats he's a full kilo lighter and so tiny round the waist that his trousers fall down!

    Porridge is really good as its slow burning and very filling but you'd need to always make it with full fat milk, and maybe put a big slug of double cream and a mashed banana in it to get lots of calories in it. I used to mash ripe avocado and banana together for Tom as both are high cal and although it sounds gross its really not! Its sweet and creamy. Custard from a carton is also good with fruit puree stirred in.

    Let me know if you try any of them!

    Maria xxx



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