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Concerned about daughter with CP

sarana Member Posts: 4
hai everyone,
This is my first post here, my daughter, Abbey was born with true knot in the chord and also suffer from lack of oxygen, maconium aspiration ( she had fits few days) . she is term plus 11 days and i never had any problem during the pregnancy, only last half hour in the labour, things went wrong (baby heart beat went down and my pressure gone up so i had Emergency caesarean). she was in the NICU for 11 days and discharged to home with full recovery ( no more fits or any medicine to take) but refer to MRIscan. She had mri scan recently which shows abnormality in her brain and i have been told this can lead to atetoid cerebral palsy. when the doctor said the word cerebral palsy i am totally shocked and devastated. i could not eat or sleep for a week. i have got so many things in my mind to ask but i do not know where to start.
my daughter is 5 months old now. she is very lovely and smiley girl. she recently star to rolling up. she just start her physio and doing well, and expecting to see community paediatrician in few weeks time. i do not know what to ask or expect from them. is that my primary care trust going to provide enough care for my daughter? I really want to give her best treatment as possible. i have seen scotson technique, brainwave and boobath centre who help for cp children. is anyone recommend it to use them? please let me know.
I am also concern about the hospital treatment/antenatal care I received,
Is any one had true knot in the chord? my consultant told me this is very rare and no way to find in the early stage or in the scan. he also mentioned I might have low water in my water bag . During my pregnancy my tummy was not that big. I had the scan at 34 weeks everything seem to be fine . I remember sonographer mentioned that I had low water level. In the scan report liquid volume is normal. Is that every county care trust (NHS) policy to wait 2 weeks before to get induced. I do not know why I had been waiting for that long. abbey is my fist baby so I do not know nothing . sorry I write a lot but still I got so many worries and questions. please if anyone had similar problem please help me.
thank you


  • sarahpratten
    sarahpratten Member Posts: 35 Courageous
    Hi - sorry to hear your daughter's brain scan gave you bad news. However, on a positive note, at least knowing now, you can start therapy while she is still so young. You asked for people's experience of the various therapies. I have used The Scotson Technique for my son and have found it very effective. He has changed from a quiet little boy who was often in his own world to a lively, chatty boy, walking and talking with a much improved body structure. The great thing about TST is that it addresses the cause of so many of the problems that occur by strengthening the diaphragm (which is weakened in brain injury as blood is redirected from the diaphragm to the brain). My son was 20 months old when we started TST and within a month his crying got louder (yes - this was good!), he started to babble and he started to digest his food properly and gain a little weight (he had been borderline failure to thrive). My only regret is that I didn't know sooner that Will had real issues - the paediatrician had adopted a wait and see approach with his developmental delay and we had managed to convince ourselves that he was catching up! It was only at 20 months we were told that the developmental gap had grown and would continue to grow.
    If I had another child and I was in a similar situation I would adopt a "Just in case approach" and definately not a "wait and see approach" Personally, I found the NHS therapies Will received when he was very young hopelessly inadequate, although now (he is 9) they are quite useful.
    The other thing I would recommend is a trip to a good cranial osteopath.

    Remember, the sooner you start therapy the better as it is easier to prevent unwanted changes than undo them.

    Good Luck and Best wishes,
  • sarana
    sarana Member Posts: 4
    thank you sarah
    I made an initial chat with them today. I want to start scotson technique ASAP. how is your son? I hope he is doing well. Take care.
  • twem
    twem Member Posts: 3
    i know how you feel my daughter is 7 and a half months she was in full term she had maconium aspiration and also fitted for 3 days she was in special care for 9 days and we were told on friday that she has cp i,m very sad has i feel the hospital had alot to answer for they didnt listen to her heart beat when i was in labour sorry no only for 11 seconds for the full 5 hrs i was there in labour when she was born the cord snapped becos it was too short and they seemed to think in scbu that she had been in the maconium for a few weeks that at some point she was destressed and her oxygen levels were 70% for around 15 minutes
  • sarana
    sarana Member Posts: 4
    hi twem,
    sorry for the late replay, As i am busy with hospital appointmens. how is your little one? seem to be your daughter and mine as similar issues. has she start physio and occuptional ? earlier we start is always better. we start some other therapy too. have you seen your community team yet?.sometimes this is too difficult to put the things right at the first place which take lot time and frustration.I am live near north london.if you have some sparetime (i know how hard to get spare time) we can have a chat or meet up.
    take care


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