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New Diagnosis - Help!

GuestGuest Member Posts: 1,968
Hi Everyone,

Having just read some of the posts on this forum I feel a little embarrassed to be posting up about our troubles - which are minor in comparison to some of your heartbreaking tales. However, we are struggling in our own way and would love to talk to anyone else going through similar things.

Our 6-month (corrected) baby, Daniel, has just been diagnosed with quadriplegic (excuse my spelling!) CP. He was born at 30 weeks after we lost his twin brother at 19 weeks gestation. Miraculously, although his little brother was delivered, Daniel stayed inside me for another 11 weeks.

We are blessed to have Daniel, and he is a contented, smiley, chatty, lovely little boy. However I think we've got tough times ahead. He barely moves his legs, and although he's developing deliberate movement in his arms, they are still stiff and jerky. He's getting head control although it's not brilliant yet.

The physio has just started talking about assisted seating and later a standing frame. It's all a really scary dose of reality. Although we knew that CP was on the cards for a while, we've all been hoping that he'll make a miracle recovery.

We are getting physio and portage each week which is wonderful, and we feel both ladies are lovely and experienced, so at least we feel that we are doing what we can. I can cope with the short term - and we can see new abilities coming all the time.....but when we look into the long term it all seems so bleak and scary.

I'd love to hear from anyone else going through a similar experience or who has been through and coped.
Any tips?

Thanks for reading-
Catherine

Replies

  • 605emmaa605emmaa Member Posts: 1

    Hi

    I have a 9month old daughter who has just been diagnosed with spastic quadripligia. She had intense physio for a week and within 3days she learnt to roll over by herself, so im hoping that the physio will continue to improve her posture. She cant yet sit up by herself, and she doesn't reach out or play with her toys.

    I understand how scared and nervous you're feeling, I have been there for a while now. My daughter has just been given a special chair for her to sit upright in to assist with her feeding. She cant eat anything with lumps in so is still on stage one food. Apparantly its all to do with muscle tone. When her chair arrived, it looked really frightening, but once it was all set up and she was sitting in it, it looked so much better.

    I completely understand how you're feeling, and i really sympathise, if you want to talk more, then i'm on here daily.

  • ValVal Member Posts: 15

    My daughter also has CP spastic quadriplegia. I too lost a twin at about the same gestation. I carried on with the pregnancy though and Laura was born at 29 weeks. I tried many non invasive therapies for my daughter, before finally falling on G-Therapy when Laura was entering her teens years. The therapy where we noticed more change than with any other was G-Therapy http://www.g-therapy.org  If interested check Case Studies spastic quadriplegia on this link. Also check Testimonials on the same link, there are photos here showing a distinct change in my daughter. Some very quick changes I noticed in Laura on G was she started to use her right hand more, Her dreadful startle reflex began to clear up. She also began to drink much more. She had dribbled in bed at night time that too cleared up. Her swallowing also improved, she told me her tongue could roll after she took G, she said before it could not. Maybe that helped, hert speech also became stronger.

    A Clinical Trial of G-Therapy has recently been announced, it is due to be held in Asia, apparently it is more cost effective today (Wall Street Journal supplied that info).

    We have an International Support Group. It is on http://health.groups.yahoo.com/group/g-therapy/ Dr. Oswal has patients from all over the world. He is treating all ages.

    So I have been down this road and through this experience, it has not always been easy, but it was what happened in your pregnancy that I felt the need to reply.

    We do sometimes wonder what Laura's lost twin would have been like. I was told that it would have been non identical, because I held onto Laura they would have been in two different placentas. I was told as well losing one twin is not that unusual. In a previous generation we had twins in my family.

    A professional in the USA also has a daughter with CP spastic quadriplegia. He has noticed she has also shown some change on G, check http://huletsmith.com

    All the very best which ever route you take on this journey. That is the road we took at least you can store it in the back of your mind. Prior to trying G, we had physio, OT, Conductive Education, orthotic walkers, HBOT, patterning, splints etc.

    Val

     

     

     

  • wenderswenders Member Posts: 2

    hi catherine

    I too have a Daniel, he'll be 5 in sept and just about to start school, when i look back i can't belive how far we've come.

    it does seem like a opening to a huge abyss that there is no escape. but it does get better or at least easier to live with, i'm not sure. xxx

    has anyone spoke to you about counselling? it does help you go through the whole grieving process, for the little boy you lost and also for the healthy child we all want. it really helped me. 

    i coped by throwing myself into reading up about CP, mobility rights, issues, problems and of course join here, specialkidsintheUk.org & hemihelp.org online and joined as many mainstream playgroups i could take him too, to get him used to other children and in a way to make me get out the house and keeping busy. I also did LOADS of play physio. i had a little routine set up that i did around the playgroups but made sure i did at least 3 hours play with him everyday. it was all set up around the physio exercise & stretches. looking back it was my way to coping and trying to control the situation. i finally slowed down when daniel was about 3 years old and then started to deal with accepting his condition. it was hard going.

    the fact that he is gaining head control and he's learning how to control his arms then that is all fantastic news!!! wow! well done daniel xxxx

  • renacahillrenacahill Member Posts: 145
    Hello catherine
    My daughter and her husband and myself were in your shoes just over a year ago, and it was dreadful so we know what you are going through. DGS had brain damage (patchy damage to his basal ganglia - the movement control centre) through placental abruption at birth and it was dreadful at the time of his birth (wont go into horror of fitting, MRI scan,colic, etc) Anyway all settled down but at 6 months also had minimal movement in legs and arms shaky and uncordinated. He had fair head control though, and eventually became the happy smiley cutie we know today! At 20 months says a few words, can sit if placed in position but topples easily(getting better) rolls over onto tummy with ease, is make an effort to crawl, though weak arms means he gets carpet burns on chin!
    He has had full services from the start and his physio says he has achieved in 1 year what she expected in 2! She says all his gross motor skills are there but need strengthening and fine tuning. She thinks he will walk with afos and not need botox. His main issues are balance and coordination and finding the 'right' muscle tone, he fluctuates between rigid, floppy and normal. She says he will eventually learn which one is right and go on from there. his neck and trunk are still relatively weak but are strengthening all the time. We feel that he is affected in all parts of his body but each individual area is mild, but because its everything it will take longer to get there.
    Don't think about tomorrow, concentrate on the here and now. You have already seen improvements - these will continue if he is like our LO. Learn all you can about CP but be careful of the internet it always has worse case scenarios on it!. Buy " Teaching Motor Skills to Children with Cerebral Palsy and Similar Movement Disorders: A Guide for Parents and Professionals by Sieglinde Martin (Paperback from amazon - it is the most amazing book and our physio bought one for her department as a resource as it is so good. (not scary either)
    I could go on for hours about the things and equipment that has worked for us, but as the other poster says dedicated physio (play!) for several periods through the day and making every activity count to 'pattern' the correct movements is essential. Its hard work and mentally stressful as some days you think 'it shouldn't be like this', but it is and those days get rarer and rarer. Will they ever go away? Can't answer that one yet. If you have any queries let me know.
    cheers. Kate xx
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