- Jenna's mommy & a short update on Crystal Aquielle...

[Guest guest]

- well, with Crystal I gained more then I did with my other 3 kids. I

retained more water, also. I was an older mom. I was 38 when I conceived

her, 39 when she was born. I had some kind of infection when I was in my 1st

trimester. Now I wonder if it could've been the CMV ??? Anyway, the doctor &

pharmacist both told me if I didn't insert the cream they prescribed for it,

I would risk having a child with birth defects. Isn't that hilarious ????

I'll never know if the cream itself caused the PMG. It said some pretty

awful things in the brochure in the box, about the med going through the

placenta into the fetus ( in mice of course )...You know, sometimes you just

can't win...

My Crystal had a seizure type called Infantile Spasms as a baby. They put

her on a med called ACTH ( or Acthar Gel ) for it. It's injected into the

child's leg. No fun for any of us. I think it bothered us more then it did

her, though. This stopped her seizures. She remained seizure free for 2 1/2

years. This allowed her to develope. It was just before her 3rd birthday,

that we found her semi-conscious on the floor. That was the 1st day of our

slow descent into hell...She's been on ALOT of different seizure meds. Her

seizures just continue to worsen & change form. Her most prevalent seizures

are simple & complex partial seizures. She has these at least 1/2 of every

day ( most days )...She usually has a few tonic ( where she'll jerk either

forward or backwards & go flying. If she's standing, she'll usually fall

flat on her face ( or her back ). If she's sitting, she'll usually smash her

face into whatever is in front of her. She's hit her face into the kitchen

table a few times. Not a pretty site. If she's not wearing a protective

helmet, she'll either bust up her nose, split her lip, or both...Another

favorite seizure type of hers is the atonic seizure. This is commonly

referred to as the drop attack. She'll be walking along being her happy

little Crystal self when all of a sudden she drops like a stone. I think

these scare the bejeesus out of her, because she frequently starts crying

right afterwards... Crystal is now wearing the 5th helmet designed for her.

The newest one offers her the best protection to date. Unfortunately, I had

her in her older helmet yesterday when she had a tonic seizure & managed to

scratch & bang her nose again. Poor little thing just can't win.

She's waking up now, so I have to go. I'm going to post a few new photos of

Crystal today to the PMG Yahoo site...

Give Jenna a great big {{{ HUG & KISS }}} for us...

Take care & be well...

- Crystal Aquielle's mommy...