To DeEtte and all other list members

[Guest guest]

DeEtte (and everyone else),

Yes, night seizures set in after melatonin. I gave it two nights in a row-

1.5 mg. It was totally keto-friendly. I cleared it with both the dietician

and the neuro. That was a week and a half ago and now I can't stop the night

seizures. They only start after Marissa falls asleep, so I have to believe

the melatonin did something to the part of her brain that induces sleep.

Now, how to stop it?

I have not given her any more since those two nights.

Yesterday was horrible. She sat in one spot on the floor with her tongue

hanging out, drooling. Wouldn't eat, wouldn't interact, wouldn't do

ANYthing. We went grocery shopping and she hung over the side of her

wheelchair staring and drooling on the floor. Most definitely one of our

worst days.

Then last night after I finally got the baby to bed- about 1130 and fell

asleep myself, my husband was yelling for me to come quick. I got up and ran

downstairs where Marissa was seizing and choking- all blue. Yuck- I hate

that. He just got scared, but I don't blame him. She had started to seize

and he thought she stopped, so gave her formula through her tube, which she

proceeded to choke on because she was still seizing. We gave her Diastat and

all was OK for the night. Today she's acting wonderfully. Crawling around

like mad and babbling. I am just absolutely clueless. What do you guys

think? Is this from the melatonin? There is nothing else different and

ketones have been around 100- perfect for Rissa. Can anyone reassure me that

it will go away? My hubby is saying we messed her up for good now and the

seizures will never go away. I try to ignore that. He's just feeling really

tired and worried.

Oh- DeEtte, I guess if you have a child that tends to be very sensitive to

lots of stuff (Marissa is) I would hesitate to go with melatonin. But if

not, it's worth a shot. There are lots of people that have great experiences

with it. Let me know what you do and how it goes!

Love

Jen