25 Feb 2013

Trying to find the link

As soldiers of Gulf War 1 were ordered to take NAPS tablets every 8 hours for 90 days (they were investigative drugs containing Pyridostigmine Bromide and more over, the tablets ingredients' were unbeknown to them), I'm trying to understand the side effects of these tablets and link them with Ellies neuromuscular issues.  Not so much to lay blame but to try and fast track what our NHS are dragging their heels over.

The US and Australian vets society have identified that the tablets have created post war health issues in heir veterans.  And yet the UK Government have avoided admitting this altogether - they ALL took the same tablet.  Again, we are not looking for blame but perhaps trying to understand why Ellie has something so rare if not unique.  The part that I think forms the link is Ellies constant nerve jerks - her entire body jerks at varying intervals.  From little twitches to full leg jerks - its both fascinating and sad to see.  She used to constantly be told off for fidgeting at school, its broke my heart.

On Friday we went to see the Genetics team at Alderhey to try and decipher some mirco array results from tests that she had in the US in 2008.  They ruled out the Chromosome Xq28 duplication fault (apparently mark has this but there is no obvious reason why) and the deletion on 22Q11 being contributing issues but they were very keen to learn why a duplication on 4q35.2 offers Ellie a muscular problem when there is normally a deletion on that gene for such conditions.  This means they have found something rare.  Well, not found something rare but learned just how rare it all is.  Because we know Ellie's issues are not common.

Id love to be in touch with veterans whose children were born with autism, defects and genetic disorders and whether their fathers took Naps.  I'm not doing an investigation, just collating information to help try and put a few questions to rest.  Please beg your friends to tell friends to tell friends and share and share and share on facebook.  Many thanks x

Lots of love xx

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3 comments:

Lisa-Jane said...

I wish I could find an answer for you Kirsty. I wish that you didn't have to wonder and fight xx

Anonymous said...

Probably doesn't help your Ellie but my DH was in the army - before the Gulf wars. He was part of a Regiment that "tested" all sorts of things, from equipment to effects on the body of gas! We have three children, one who has Rheumatoid Arthritis - diagnosed at 28, but suffered for a few years before that and suffers bouts of depression; the next one has dyslexia (diagnosed), dyspraxia (not yet diagnosed) and severe depression (maybe Bi-polar) and the youngest has dyspraxia, ASD and Bi-polar (all diagnosed).
My DH has had health problems for years; he is insulin dependant Type 2 diabetic, has Crohns (sp?) disease and in remission (7 years and counting now) from cancer. His medical records from his time in the army "disappeared/were misplaced" between leaving the army and registering with a civvy GP (all of three weeks!!!).
I really hope you are able to find some answers for Ellie, soon. It is the not knowing that's the worst, isn't it? Is there a support group? All the very best to you all. I wish I could help. Jude.xxx

Debo said...

Shame on our government! Our amazing servicemen and women put their lives on the line for our country - the LEAST they deserve is answers to their questions!
I wish I could help!

I do hope someone can help you,
Deb x