Carmen Burton and I (Lisa Saunders) are excited about collecting stories about how your family was affected by congenital CMV. I wrote to her (she raises awareness in the UK) asking what she thought would be of interest to those reading this potentional book. She wrote back:
"From my experience with families the first thing I'm always asked is "Why didn't I know about it?" Other things that could be useful might be:
At what point did you find out? During the pregnancy or after the birth? If during the pregnancy - did they take any medication?
Do you know where you caught it from?
Do you know if it was a primary infection or a re-occurrence?
Other than recommended for CMV anti-viral medications did any children take any other type of anti-viral medicine? (Reason being - I have a pair of identical twins. Both classed as asymptomatic at birth but did show some signs which were diagnosed due to prematurity and being twins. One was treated with anti viral meds for a different reason and is a lot less affected than the other.) So I am just interested that's all!
A lot of my parents get stressed out by sleep, behaviour, autistic tendencies and eating issues. Some professionals in the UK don't recognise these things as probably being part of the CMV circus, so it would good to get them listed.
I have noticed that quite a few of my children who go to school and are capable of learning; that regardless of their level of attainment, some struggle far more in maths than they do in other subjects.
Might be too many ideas to include as questions, but just things I am interested in!
Will update Natti's story and post it soon.
If you email Neil - either on the circle or from my website - he made and looks after the site for me - I'm sure he can help you with your pictures. If not let me know and I have a dad who is a computer whiz!
Do you want a statement from me why I got involved?
Hoping to get to finally see you in Atlanta!
Carmen
Carmen's newsletter: CMV Support Group Newsletter (from UK)
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