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Thread: Urgent Advice/Reassurance Needed.... Please Help!!!!

  1. #1

    Default Urgent Advice/Reassurance Needed.... Please Help!!!!

    Hello everybody, firstly I am new to these forums and although my son Thomas was born with severe hydrocephalus I have been really ignorant to his illness for 16 years as it left him so severely disabled mentally and physically that we have have just got on and done everything we could for him.

    The worrying thing is the only option for the NS is a VA shunt which I have read many things about and we are very scared about all the complications, mainly post op. He obviously has a very healthy and strong heart which we are worried will now become compromised with the tube going to the right atrium of the heart. If you wish the story is below to read.... Many thanks in advance

    Anyway he has had two shunt revisions, his first was fitted when he was 10 days old and it lasted until he was 10. The NS was amazed it lasted as long but anyway he was fitted with his second VP shunt and had no problems apart from mild seizures which he also has had since birth.

    In June of last year Thomas became very unwell and spent until Feb 2012 in and out of hospital (mostly in). He was vomitting, which we thought was shunt related, but diagnosed with auto immune pancreatitis. I wont go into too many details but he was mis-diagnosed and in Feb of this year had a perforated stomach (due to 2 endoscopys in 2 days). We were asked maybe it was time to let him go but I insisted they did all they could as I felt they were missing something. How right I was as when they opened him up to fix his perforated stomach they found he had a gastric volvulus (360% twisted stomach).

    Now I'll move on a bit, he has been fantastically well from mid March - mid June when he started to have what the hospital believed were fainting episodes. We were told there was no treatment for fainting and as he was recovering very quickly there was nothing to worry about. 6 weeks later, what I can only describe as a boil, presented itself on Thomas's chest. After a visit to hospital we were told he needed an operation immediately as he had an infected shunt.

    The first CSF test at microbiology revealed a VRE (vancomycin resistant enterococci) which was extremely worrying them and since I have read about it I now understand that Thomas is a very lucky boy to still be here. He has had 4 EVD's whilst they treated the infection and thankfully it hasn't appeared since that first test in theatre.
    Last edited by Bob Godfrey; 09-20-2012 at 05:33 AM.

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006


    just wanted to give you a welcome! and let you know you cannot post a link until you have at least 10 posts here. you might want to join in on the child neurology forum-more active.

    your son is a true survivor. it was all Greek to me but wanted to let you know people here do care & you've come to a great place for support.

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
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    ((((((Bob & Thomas))))))

    Welcome to Braintalk!

    Please join us at the Child Neurology forum, where we have more members participating.

    We're a friendly and supportive group, with wide open arms.

    Join us!

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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