Child with ACS

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My 8yr old son was diagnosed a year ago with ACS TYPE 1. He has had a hell of a year with MRI scans, daily migraines and stays in hospital. He has missed lots of school and is missing out on the fun side of his childhood because of this cruel and painful disease. His daily migraines are so bad ive had to buy him a blow up pillow to take whenever we go out so he can lie down!! He is on 2.5ml PROPANALOL x3 daily. the pain has been so bad iv been giving him 3 doses calpol daily to. the hospital is now worried in case its affected his liver! He is due anoth MRI in couple of weeks th see if theres any change. All i know is that he cant go on like this. Ive also had migraines 15yrs. Finally doctors sent me for MRI to see if i have ACS also. Awaiting results. This is my first post on this website, if anyone has a child with ACS and has a spare min for a chat, id be most grateful. .

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13 Replies

  • Posted

    hi angela, is this your first time on this site? How old is your child?
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  • Posted

    Hi yes it is and he's 10,has your child had decompression surgery? My son is due to undergo it in the 6 week hols and I'm wondering what to expect
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  • Posted

    What a worry Angela. My sons mri came back ok at moment so no op just now thankfully. I thought this site would have been helpful as its the only one that there seems to be in uk, but i dont think its used a lot as there is no one to talk to. Where are you from? I can only imagine the worries you have and my thoughts are with your little boy for a speedy recovery. x
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  • Posted

    Thank u for reply,I've found there's nothing on the net either besides this site and it was his neuro surgeon that recommended it to me,and so far only u have replied smile I'm from South Yorkshire
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  • Posted

    I was on MD JUNCTION but that sites in USA. Only heard of this one in UK and ur only one to talk to me since i first started on site in FEB. I have read other posts and seen photos of wot this cruel disease does. It is so hard to see wot the kids go through on a daily basis and how much childhood they r missin out on. hopefully after ur wee mans op he"ll b fightn fit. xx Anytme u want a blether , day or nite,u knw whr i am. xx
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  • Posted

    Awww likewise, it's nice to talk to someone who's going through the same as me, to em it's still the unknown and that's what I hate ,I have all these questions and no1 to answer them , how is your son now
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  • Posted

    Hi Angela. My son who is 13 has chiari type 1. He was decompressed in November. I was also at a loss until i got in touch with the ann convoy trust. You don't have to pay membership. I rang them as a last resort as like you no one was answering my questions. They have been fab
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  • Posted

    my son is fine at moment migraines daily and still missing 1 day skool per wk but thankfully no op.
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