welcome & Jenna

[Guest guest]

Hi and Jenna

Welcome to our group. This is the place to ask lots and lots of questions, as

there will be someone who has either been through the same experience or who

knows where to find info. There are many different issues raised with PMG kids,

and each child has his/her own selection of issues. Seizures are common and

developmental delays too, but it is often the case that they are unpredictable,

and we as parents need to keep and eye out for changes. What seizure med does

Jenna take at the moment? and what are her seizures like? Its good to hear that

you think her sight is improving. Our Hannah had cortical vision impairment

(brain could not interpret the visual messages sent by her apparently perfect

eyes), but she sometimes responded to movements by tracking and ever so

occasionally focussed on us. She responded well to light and dark, and we had

lots of fun with her, switching a light on and off in a darkened room. She would

smile and look towards the light as it came on, and when it was switched off she

would look towards the doorway which was lit by light from the next room.

In answer to your question about pregnancies... I had miscarried my third

pregnancy at 8 weeks, but my fourth pregnancy with Hannah was normal and without

complication. I was well, and felt no difference to my previous two healthy

pregnancies (except that I was older, less fit, and already tired from caring

for two other young children!!!) The regular ultrasound at 18 weeks detected

nothing. When Hannah's PMG was diagnosed blood tests revealed that I had CMV

antibodies, but Hannah did not, so it was deemed that she had not been infected

in utero. We are still waiting for tests to be completed which may determine if

there was a genetic reason for her condition.

As for getting messages via the web or email, its really just personal choice.

Both are easy. Good idea to write down all your questions. You will have lots of

them no doubt, and if you are like me they will be forgotten in the hustle and

bustle of busy family life. Take care, and let us know soon how Jenna is

progressing.

(mum to angel Hannah, Australia)