Hello Everyone!
We wanted to quickly welcome you to the blog site. If you have been a part of our Facebook online page then we are super glad that you were able to add yourself to this site in order to keep in touch with our wonderful community of friends that we have come to know.
If you are new to this blog site, please feel free to add your email and become a follower in order to meet some people who are dealing with Fetal Valproate Syndrome or who are helping to try to raise the awareness of this syndrome.
We will continue to keep the Facebook page up and running as well, however, we have read that there are going to be some drastic changes to the layout of their pages that may not make it as 'user-friendly' to us, being that we like to share stories with each other. We are trying to see if there is a way that we can continue to add our stories as to how our children were diagnosed and pictures of our children to share with each other. Also, we will be working on improving this blog site in those respects for the next little while. Any suggestions as to how we can improve this site to better suit our needs, we would greatly appreciate hearing from you.
Also, if you aren't already a member of the Facebook Fetal Valproate Syndrome page community, please take a moment and check it out at:
http://www.facebook.com/profile.php?id=100000814715259#!/pages/Fetal-Valproate-Syndrome/160552543976808
Thanks alot for joining us!
We can't wait to hear more our your stories and to continue building a strong support group for others dealing with FVS.
Chris and Noreen Spagnol...
Hi Noreen, I'm so glad to see there is someone in Canada dealing with this syndrome. My name is Janet Williams and I'm the secretary and founder member of the Organisation for Anti-Convulsant Syndrome and the Fetal Anti-Convvulsant Trust in the UK. We deal with all the anti-epilepsy medications which do this to our children and have set up parent officers in New Zealand and the USA. We've also been joined by a similar support group in France and we're all fighting together for the same causes. If you've time please visit our website www.oacs-uk.co.uk Keep up your good work, there are so many parents out there needing our help and support!!!
ReplyDeleteThanks Janet.
ReplyDeleteI'm trying my very best to do my part. I really do hope that people are being made more aware of FVS.
Noreen...
I am really trying to find more American parents dealing with this. I have found many internationals from all over the world but haven't been able to track down any from the US. I know they are out there but I wonder if they even know their children have FVS. Do they have a correct diagnosis? Are they still wondering WHY their child has issues? I have heard of one child that was actually being treated where Holden receives his therapy that has FVS but they moved to North Carolina. What are the odds?? LOL
ReplyDeleteAnyways, I am glad that you started this blog. I originally had a blog going about both of my two boys (my older son has Aspergers, not associated with FVS since I was not on Depakote with him) but stopped when I got too busy. I'd love to help you out with this one if you ever need it!
Hi i am karen keely , has anyone found any family's in ireland other than me . I have 3 beautiful boys with FVS.
ReplyDeleteThe campaign in the UK is continuing. Our regulator the MHRA still hasn't issued proper warnings to doctors about Sodium Valproate.
ReplyDeleteThe Fetal Anti Convulsant Trust www.fact-uk.co.uk is there to campaign, we have a facebook page with people from Europe, US and Australia. We give each other support and share our campaign ideas and correspondence.
Organisation for Anti Convulsant Syndrome www.oacs-uk.co.uk is a charity and is there to support parents.
please check out apesac association and marine martin on facebook. they've got loads of recent links.
ReplyDeleteI just found out that I am pregnant and it was unplanned and I am now four weeks pregnant and have been taking this medication 500 mg daily, I haven't been able to find a lot of information about wether stopping the medication now will make any difference
ReplyDeleteswitch to keppra asap
DeleteHi Noreen , feel's like it being , age's since we have talked . I have set up OACS IRELAND/NORTH/SOUTH /UK ... with the very kind friend's of OACS in UK . I'm not part of any other group ..... My friend's are jo / Deborah etc ... I have nothing to do with any of the above group's .... How those beautiful girl , I have being working long and hard ,and made some really good contact's in Ireland . I am a Trustee of OACS UK and things are moving . Will need a PA at this stage he,he . Just tought I say hello .
ReplyDeletebig hug's ..... Karen walsh , OACS IRELAND NORTH/SOUTH/ UK ...