Hiya,

I don't want to put a big long post on here, as I know some of you
already know Maddie's story. I'll just put a quick update.

Maddie is just over 1 year old. She has MPEI, & still has 10-20
seizures a day, only when she is falling asleep or waking up.
However, this is the best control we have had so far. Maddie cannot
hold her heada for more than a minute at a time, but as soon as she
drops it, she lifts it again. She can kick her little legs, & move
her hands, although the movements aren't purposeful (except, if you
tickle the plam of her hand or the sole of her foot, she pulls
away). She can smile, you have to really work to get one from her
though!!

Maddie is currently on the keto diet, which is great for her in terms
of being more alert, happy & smiley, but has not reduced seizures
yet. But we are still tweaking it. We have recently made contact
with professor olivier Dulac in Paris (who first described MPEI as a
syndrome). He has suggested that levetiracetam, topirimate &
clonazepam seems to have a positive effect, although not for all
kids. He also says vigabatrin & carbemazepine can worsen the
condition. We are weaning Maddie's carbemazepine, have already
weaned clonazepam, so now she is just on Levetiracetam, a small dose
of vigabatrin (almost gone) & vitamin B6. We may add topirimate
later if the keto diet doesn't reduce seizures.

Maddie still drinks from a bottle, & also has 1 or 2 small meals of
mashed up food a day which she enjoys, & which we are so grateful for
her to be able to do this still.

Maddie's new trick is - she has learned to track with her eyes!! She
learned it 3 days ago, & it is just so clever that I want to cry.
She has a small fluffy bumble bee, & if I move him from side to side,
she follows with her eyes, or turns her head if I move him too far.

Anyway, hope that wasn't too long!!

Much love,

Nikkie