Cerebral Palsy
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Just diagnosed with Spastic Quad CP

hayley564hayley564 Member Posts: 6 Listener
edited May 2014 in Cerebral Palsy
Hi All,

I have twins who are 10 months (boy and girl). They were born extremely early at 25 weeks.

My little boy has today been diagnosed with Spastic Quadriplegic CP and I wondered if there was anyone out there who could share their experiences with me? I feel a little alone!

Hayley

Replies

  • ScopeHelplineScopeHelpline Member Posts: 210 Courageous
    Hello Hayley

    If you'd like to contact our helpline on 0808 800 3333 we can put you in touch with one of our regional workers who can arrange to visit you at home and hopefully answer some of the questions you are bound to have. The regional worker can also give you information about Scope services, and other services in your area.

    We look forward to hearing from you.

    Kind regards

    The Helpline Team
  • stephgreenstephgreen Member Posts: 28
    Hey it does feel like your alone at first but there is lots of support. MY son has quad dystonic cp, I take him to school for parents it has helped cos you can meet other parents too. It does feel better in time but I remember when we first found out there was a problem it's horrible and never feels like it will be ok, but it does get better. Still have bad days but who doesn't !! Just do lots of physio it's so important at this early stage , also I'm looking into baby massage to make the muscles loser it's supposed to really help. If you look on you tube at Peter walker and max it looks amazing. Jack is 19months now and we found out when he was 6months old. You take care and it does get easier xx
  • imogen37imogen37 Member Posts: 61 Listener
    Hi Hayley

    I have boy twins, now 20 months, born at 29 weeks. One of them has spastic quardluplegic CP.

    Being a mum to such child can indeed be a bit lonely. I know people with twins and people whose children have additional needs, but is not quite the same. I would love to chat to you!


    x
  • gigglersmumgigglersmum Member Posts: 7 Listener
    Hi Hayley,

    I have an 8 month old boy with spastic quad CP. I felt (and often still feel) very lonely and scared about the future but I find it easier to cope now than when my baby was first diagnosed, which was soon after birth.

    I have found getting the right physiotherapy in place and asking for support from various different places (specialist health visitor, GP, friends, family etc) essential. I've also started to meet other parents of babies with CP through the physio and activities we do, which has been a real lifeline.

    The other thing I try and do is remember that my son is still developing and his fate is not set in stone. Although I make an effort to be realistic about the future and acknowledge the challenges he faces, I also keep in mind that no one can predict exactly what he might be able to achieve or what his future holds. I also try to take pleasure from all the things he can do (e.g. giggles a LOT!) and not just worry endlessly about the things he struggles with.

    It takes time to adjust after a diagnosis but not all days will be bad. You'll have fun family days and happiness too.
  • LottieSLottieS Member Posts: 1
    Hi. I have nearly 2 year old twin girls. One is ok, but little one has had major heart surgery 3 times, kidney issues and quad cp. Every day I am sad for the things she can't do but delighted that she has made it this far. Life got better when we discovered the snowdrop foundation. Andrew, the founder, is a neuro scientist who builds specialised programmes for little ones, based on techniques to improve brain plasticity. He is amazing and it's great to have someone on your side. we have seen such a difference in H's abilities and can only put it down to Snowdrop x
    T
    You feel like you are actually doing something productive to help x. Good luck everyone.
  • mollymoobarnesmollymoobarnes Member Posts: 107
    Hi Hayley

    I aalso have boy/girl twins, Tom and Iris. Mine were born at 32 weeks and were sent home fit and healthy after a month is special care to fatten them up.

    Tom has quad CP (we don't know why or how - we'll never know) and Iris is able-bodied. Tom is bright (can count to 10), chatty (this morning - "sit down daddy and read Peppa Pig now please" as clear as a bell. This is his longest sentence to date!), eats well with help, able to sit a little independently (although he still falls over a lot), walks with his hands held or with a ladderback chair, can cycle in a special trike all on his own (we found this out just yesterday when he pedalled across our decking, leaving me sobbing so hard with joy that I couldnt breathe!) Miracles do happen - we can't make the CP go away but your little boy will do things you never thought he would and with your love and support he will come to terms with the things that aren't possible.

    It seems five minutes ago that we were where you are now - Tom was 11 months old and we just knew that things weren't right at all, even though the docs all said it was colic (COLIC?!?) We got started with Conductive Education as soon as he was diagnosed and its been just fabulous. He has gone from strength to strength - in tiny tiny little steps. You will learn to celebrate these little steps in a way that no other parents do and you will have different celebrations with his twin.

    Thinking of you and your family. You are on an emotional rollercoaster - right at the top of the scary drop, feeling your heart in your throat and you heart racing, but later in this ride come the highs too - fun, laughter and joy.

    You are not alone - I'm here if you need me! I'm on the same rollercoaster, just a little bit further down the track.

    Maria xxx
  • silanshsilansh Member Posts: 1
    HI
    MYSELF IS DEEPAK TAK A REHABILITATION PRACTITIONER IN INDIA AND HAVE BEEN PRACTICING FOR 15 YEARS AND MORE THAN APRX.15500 CASES HAVE BEEN REGISTERED IN MY CLINIC TILL DATE ,WITH MY PROPER GUIDANCE AND TREATMENT MOST OF THEM HAVE ACHIEVED THEIR GOAL.LET ME SUGGEST FEW THINGS FOR YOUR CHILD
    (a) AVOID MASSAGE OF OIL,IF THE CHILD IS HYPERTONIC.
    (b) GO FOR EARLY INTERVENTION IF NEEDED.
    (c) AQUATIC THERAPY IN A LUKE WARM WATER ADDED WITH A BIT OF SALT IN SUPERVISION OF LOCAL THERAPIST MAY HELP.
    (D)BE IN TOUCH OF NEUROPHYSICIAN IF THE CHILD GETS FITS.
    (E) MONITOR THE DEVELOPMENT OF CHILD .
    REGARDS
  • elf198elf198 Member Posts: 2
    Hi Hayley,

    It can be very isolating when you first get diagnosed, and especially difficult with multiples I think because you have a child who is also developing normally.
    But on the positive there is lots that can be done eg therapies. Like LottieS (I know who you are :-)) my daughter (one of triplets born at 26 weeks) has been on the snowdrop programme and has done extremely well on it. She is amazing, we also did swimming/hydrotherapy from 5 months corrected age which has been enormously beneficial.
    Imogen37 I think I have seen you on the bliss forums too.
    Its always good to meet parents in a similar position, this I have found to be really good, just to share experiences and know you are not alone. But also you find out about therapies and equipment. Not sure where you are but if you can't find a local group why not set one up, thats what we did.
  • Nina55Nina55 Member Posts: 1
    I also have twins born problems at 28 weeks and both have cp. Severe Spastic quad and the other is a hemi plegic, both boys will be 20 in october. I am new to this site but am willing to answer any questions you may have because I know how scary and alone you feel right now. It does get better.
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Yes, I use Bliss forums too as my 2 entered this world at 29 weeks. :-)

    x
  • hayley564hayley564 Member Posts: 6 Listener
    Thanks so much for your replies - I wondered if there was a way of getting in touch a little easier than on this forum? I am happy to provide me e-mail if possible? I would also be interested in meeting people in my area? Is anyone near to East Anglia?

    (note from forum moderator- the rules of this forum do not permit users to publish their personal email addresses. However, there are forums that do, such as: http://www.specialkidsintheuk.org/forum/forum.php )
  • imogen37imogen37 Member Posts: 61 Listener
    Hi Hayley

    Just wondered how you are getting on. I had asked the moderator to pass my e-mail address on to you, but obviously they didn't. Are you a member of Tamba? I am; they allow PMs so if you wish you can contact me through PM in tamba.

    Thinking of you x
  • hayley564hayley564 Member Posts: 6 Listener
    Hi Imogen,

    Apologies for not coming back to you - I have asked the guys on Tamba to allow me access to the special needs are of the forum so that I can contact you there. Do you still have the same username on Tamba as you do on Scope?

    How are you getting on?

    h
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Good to hear from you! Yes, I have the same username in Tamba. Marten is doing very well, he is gaining head control and wriggling, and we think we can feel him getting stronger almost on a weekly basis. We were in Belgium around 5 weeks ago, seeing his therapy team and they were very pleased with his progress!

    How's thongs with you?

    x
  • SinskiSinski Member Posts: 16 Listener
    Hi Hayley. I had twins boys at 28 weeks and sadly our smallest passed away after a month. His surviving brother has hydropcephalus and CP and was diagnoised very early. Nico is now 2 and has quite severe developmental delay. The hardest part for me was not knowing how severe he would be effected. If i knew, I could manage it but the wait and see was very hard. The way i coped was researching all the different complimentary therapies I could to to maximise his potential. Not everything will be for you and you but it will feel like to you are doing something. Physio is really important to keep the range of motion in the limbs, conductive education we love, (we do it twice a week), the BIBIC centre has good strategies and most recently, we have seen a bio energy healer. Never give up on him, believe he will surpass your expections. Nico has. The Drs had pretty much written him off but he is so alert now and most importantly, has the will to succeed. For CP kids, you have to brind the world to them so finding new ways to do this kept me positive.

    I want to assure you that you cry less, the world looks less bleak and there is more laughter in time. But it is a painful journey, the one of acceptance. And meeting other parents who know how you feel brings you some comfort. Also, read Blue Sky July. A beautiful story by a mother who feels like she lived your life. Get the tissues ready.

    Stay positive. Lots of love and hope x
  • MartinpettMartinpett Member Posts: 1
    Hello,
    My name is Martin Pett I am currently a student at the University of Greenwich, for my final year project I am researching the benefits of exercise for children with Cerebral Palsy. I have created an online questionnaire for the parents of the children to fill out. I hope that many of you take 5-10 minutes of your time to answer this questionnaire,
    I am very passionate about this area and hopefully with you I will be able to gain excellent evidence and share with you and others what potential benefits exercise and physical activities has for children and also adults with Cerebral Palsy.

    the link for my questionnaire is: https://qtrial.qualtrics.com/SE/?SID=SV_508ecIA1bzrxVU9
    ...
    Any questions please do not hesitate and email me.
    I hope to hear from you soon.

    :)
  • TripletmomTripletmom Member Posts: 37
    Hi Hayley,

    I have triplets who are 3 in Jan. Born at 27 weeks the youngest has spastic quadriplegic CP. i do conductive education, nhs physio and he goes to a private nursery one day a week with his siblings and i would say nursery and his siblings are bringing him on so much. He loves being round other children. He rolls now and again, doesn't sit and weak head control but Fridays after nursery he rolls like mad!

    I had a surprise pregnancy and now have a 9 week old, and was very scared in case it happened again. All i can say is don't treat him any different and you will have many days where you look at your little girl and think i wish he was doing the same.

    But chin up and keep pushing him, I've meet other moms with multiples and born very very early and now walk with a good physio xx
  • sarahlou5678sarahlou5678 Member Posts: 13
    Hi Hayley

    Hope you dont mind me messaging you,My son who is 10 months got diagnosed with quad cp few days ago!, i knew he had cp, He stopped breathing for some reason while i was in labor, i know what you mean you kinda of feel alone and people mean to be nice but say the wrong things, Hope to hear from you soon x
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