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Aquired Brain Injury and looking for support for my 20 month old who may have CP from the insult

williamsparentswilliamsparents Member Posts: 7
edited June 2014 in Parents and carers
Hi there, My son at 13 months old suffered an aquired hypoxic ischemic brain injury, he has damage to his basil ganglia and he is now 20 months old. At first he lost his ability to do anything, feed, see, hear, walk, talk, spasticity in all 4 limbs, spasasms all the time, poor muscle tone etc etc he was just laid there... for weeks. Slowly but surely he has regained his co ordination he can pick up and put down and change hands with toys, do shapesorters, roll over from his back to his front and go on all fours, he tries to crawl but flops (and then laughs) he can interact so if i say pass daddy the toy he will pass it to me, hes very bright and alert and laughs/smiles all at the right times. his muscle tone has gone back to normal, no spasticity in any limbs anymore, no baclofen anymore, vision tested and all fine, hearing tested and all fine, feeding is good and no ng tube although he cant take a bottle, my wife feeds liq...uids off a spoon as he struggles to breath, suck swallow all at once. he sucks on his dummy etc fine. Our peidetrician is saying he could have a form of cerebral palsy although from what ive ready William is doing so much now he doesnt seam to totally fit with career athotoid (spelling may be wrong) as hes not got most of the symptoms... my main question is there different degrees of damage to the basil ganglia and after 6 months should his speech and walking have come back and could it ever come back, its only been a short time and hes so determined. Please any help as we are really struggling with this part - We are having extra physion from physio4kids which starts soon and also Phil edge at brainwave has been superb and we see him in January - Interested in any information about the basil ganglia and CP.

Replies

  • arimiharimih Member Posts: 1
    Hello, I practise Reflex Locomotion "invented" by Prof Vojta who used it to treat CP babies and children with neuro-developmental delay. Your baby may benefit. Ari

    Also see:
    rehabps.com
    vojta.com

    *forums moderator has removed email address.*
  • hilsflynnhilsflynn Member Posts: 24
    Hi williams parents,

    this is very much 'just a thought' so please bear in mind this is from a parent with no medical or audiological knowledge, just my own experience of my own son who had a hypoxic brain injury shortly after birth (so again, I can't claim to know anything about regaining lost skills). My thought is with regard to hearing rather than CP.
    How has your son's hearing been tested and confirmed ok?
    I ask because the normal newborn hearing screen (OAE's) tests the functioning of the ear itself and not the auditory nerve. This is the easiest way to objectively test hearing. Has your son had an ABR or AABR? This tests the auditory nerve, and whether or not the message are passing from the ear to the brain correctly. My son has a condition called auditory neuropathy spectrum disorder (ANSD) and is officially profoundly deaf. He passed the newborn hearing screen (and still does) but because there is a problem with the auditory nerve somewhere he fails the ABR and AABR.
    If he has not had either and ABR and AABR, and you are concerned about his speech I would consider asking for a referral to audiology for further tests. He may still respond to sounds as many children with ANSD have access to sound - but it isn't clear and therefore is not adequate for access to language.

    It sounds like your son is doing very well, and although it may seem like a long time 6 months is still a very short time after a very significant incident. I hope that with time your son regains all his lost skills. Good luck
  • mafalamafala Member Posts: 72 Listener
    Hi Williamsparents,

    My son had a hypoxic ischaemic injury when he was 6 months old and has cerebral palsy as a result. It's very hard having had a child who was healthy and developing well to suddenly having a very sick child. He also has damage to his basal ganglia and has dystonic type cerebral palsy. His trunk is mostly affected, which means that his gross motor skills are severely affected. Saying that he is a bright and very happy 8 year old who goes to mainstream school and it top of his class in all academic subjects. He gets around in a powered wheelchair. I hadn't envisaged this for him when he was born, but he and we have come a long way since.

    Cerebral palsy is the result an insult to the brain under age 3, as you probably know. It can take months for the brain to recover from an hypoxic insult, so everyday is going to get better. What turned things around for my son was taking him to the Osteopathic Centre for Children in Clerkenwell, London (www.fpo.org.uk). I'm now an osteopath myself and doing my paediatric training there.

    William already had some important motor patterns set before his insult, my son was just a baby. Hopefully, a lot of those patterns are still there somewhere and good rehab will help support that. Please do look into Vojta therapy, as the gentleman suggests. Not sure who does it in the UK, but it's popular in the continent.
  • renacahillrenacahill Member Posts: 145
    Hello, Williams mum and dad. Firstly congratulations on having survived what we hope is the worst part of williams ordeal. A lot of parents go through what you did when the baby is born like my daughter and her husband. My grandson suffered hypoxia at birth and it is the basal ganglia which tends to be affected first in that instance, if the hypoxia continues other parts of the brain become affected as well. Luckily it seems confined to the basal ganglia. The basal ganglia is a small part of the brain where messages from the brain pass through and it interprets these messages, telling which muscles to move and how. If the basal ganglia is damaged (patchy in grandsons case), the signals telling him to do a movement in a certain way become jumbled and instead of moving his hand forward to pick up a toy, it goes backwards and fumbles with the hand movement. He has to 'learn' to achieve the correct movement, but going against all that his body is doing instinctively - bit difficult to explain but its like if you wanted to walk forwards but you have to force youself to walk backwards to actually go forward! What is brilliant for yourselves and W is that he had already learned to do these things before his brain injury so the 'movement pattern' is already there, hence his very rapid progress. Poor DGS has no pattern that works so has to start from scratch and it is very trial an error and constant teaching from us. The way you describe Ws initial spasticity is absolutely typical of a new brain injury, then everything goes the opposite way, and floppy, then its a gradual build up to normal movement. The young brain is amazing and undamaged parts can take over the damaged area and start to achieve normal function. I think (I'm not a neurologist, just a nurse!) that unless the speech area of his brain (not in the basal ganglia) is intact, and his oral motor nerves are intact - eating and drinking in a normal way is a good indicator - then he should be fine with his speech. It will probably be delayed anyway as toddlers with CP spend a lot of time and effort controlling their movements, and speech is put on the back burner a bit. But its usually fine in the end. Regarding the walking, again W is 'patterned' already to walk in a normal way and doesnt need to fight abnormal movement patterns. Children with CP can have balance issues so it may take a bit longer than normal, but I think you will find William makes a good recovery and shows very little Cp as he grows. It WILL take hard work, and it will take longer, but it will be worthwhile.
    Good luck xx
    PS We are going to give Brainwave a call in the New Year as have heard fab things about it!
  • williamsparentswilliamsparents Member Posts: 7
    hi there, thanks for your reply... are you on facebook at all? - our email is (email address removed as per forum rules)
  • williamsparentswilliamsparents Member Posts: 7
    hi are you on Facebook at all, our email is (removed as per forum rules)
  • williamsparentswilliamsparents Member Posts: 7
    Hi renacahill, are you on facebook at all?
  • renacahillrenacahill Member Posts: 145
    Hello
    Only just seen this. Yes I am its Kate Stevens and you can PM me I think?
    kate
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