Cerebral Palsy
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13 month old daughter with CP, not making much progress with Physiotherapy

zoe123zoe123 Member Posts: 12 Listener

 My baby girl was born 42 weeks +1. She was distressful during labor but we were never told as she picked up again. but there is no record of her heart monitoring 10 minutes before birth and argument by hospital is she probably was in position that it wasn't recorded. My pregnancy was low risk. But she was known to be a big baby as I had some extra scans.

 She was born with low heart rate and no breathing. She was full term. It was traumatic birth. She was brought back to life and we were told she had brain injury of second grade HIE because of lack of oxygen to brain. She had MRI scan 10 days of her life showing basal ganglia injury. She was on ng-tube for 3 months and we were told its neurological issue but she started taking bottle at age of 3 months old, I trained her to suck on my finger but she never swallowed on her test by Speech and therapy team or swallowed fluid so slow that we were told we might need to get g-tube for her as she is not making much progress so far. She took tube out as always one night. My husband said let's try bottle. We have her bottle and she took it. initially she was crying and finished it in an hour but in next 24 hours she was so trained that she finished her bottle in front of therapist in 5 minutes and made them speechless (sorry for long story, It is big achievement for us as parents and we hope there are many more to come)

 She is 13 months old now. She has partial head control, we have seen gradual progress with head control. current diagnosis is she has dystonia. She has stiffness in her arms, keep hands fisted but some use of arms in lying position. She doesn’t reach out for toys probably because of stiffness in her arms, although we help her reach out toys. She has low tone in upper trunk. Her legs seem to be better as she kicks very hard

Replies

  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Hi Zoe

    You seem to be doing a fantastic job. I hope with all my heart that your little girl continues to make the best progress she can and with parents like you she will have a happy life

    CR
    Be all you can be, make  every day count. Namaste
  • zoe123zoe123 Member Posts: 12 Listener

    Continued from above, not sure why it didn't post it all in one go.

    She is 13 months old now. She has partial head control, we have seen gradual progress with head control. current diagnosis is she has dystonia. She has stiffness in her arms, keep hands fisted but some use of arms in lying position. She doesn’t reach out for toys probably because of stiffness in her arms, although we help her reach out toys. She has low tone in upper trunk. Her legs seem to be better as she kicks very hard . She can't rollover/sit/crawl.

     We help her to rollover but her arms get stuck and she can't raise her head being on tummy as her upper trunk is more effected.

     We help her to crawl if supported from upper trunk/ stands and takes steps as well (holding upper body) we help her to do that because she enjoys it. Otherwise she cries and gets frustrated easily. Cognitively she is so smart she knows what she should be doing.

     We have team of therapists; physiotherapy, occupational therapy not making much difference as she is seen once a month for progress. We try to do things at home but she cries a lot when put on tummy and where she struggles, she just starts crying, it probably hurts her as well not sure.

     She is 13 months and there isn’t much physical movement progress. I was wondering if there are other parents in similar situation with their children and any experts here to advise anything that could help further.

     

    Thank you

    Zoe

     

     

  • jonblakejonblake Member Posts: 42 Courageous
    edited September 2017
    Hi Zoe - as all children with CP are different it's difficult to advise, except to say that in our experience Jordi's development came very slowly and it is important to stick at the physio, constantly fight to make sure you get the help you need, and not get disheartened.  Hopefully you may find that after months of apparently no progress there will be a leap forward. 
  • zoe123zoe123 Member Posts: 12 Listener
    Hi @jonblake  Thank you so much for your advise. I hope Jordi is doing great.
  • zoe123zoe123 Member Posts: 12 Listener
    Hi @CockneyRebel  Thank you for kind words. It means a lot to me.
  • sunshinysunshiny Member Posts: 7 Listener
    Hi zoe im not sure what year your post was on but i hope i not replying years later. I went through the same thing with my son he got cp he couldnt do much and i like you i didnt think his phyiso therapist did much so lucky for me my other children were alot older and helped make physio at home alot more fun then someone told me about NICE luckly there was one not far from me. NICE were amazing it was free for children under age of five,my son was2 1/2yrs and still couldnt bear weight on his feet with NICE therapy and guildess he was weight bearing,taking steps my list can go on and on but what i really want to say is please cheak it up and try it, was one of the best things i ever did for my son.

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