Update on seizures/meds

I post this stuff not only to update all Cailyn's fans but also to keep track myself and keep a timeline.

This update went to the neurologist today.

Cailyn's BP is back closer to normal and was 98/70 on Thursday (high BP was a concern on the steroids)
Her demeanor has not changed at all still very floppy arms, legs andhead; still the emotionless baby with no desire to actively participate smile etc. She is sleeping well again (12 hours overnight) since we have been able to take away the fourth dose of steroids.

She has been only on the Soy formula since Tuesday. What I read online was if she does have a casein sensitivity it could take 30 days to see adifference with that. She is eating well, fruits and vegetables andoatmeal. We've also started her on probiotics because she is severelyconstipated. I believe this is from the Kepra because she was neverconstipated before she started on that and now that we have doubled itshe has had major problems. We are giving her prunes daily, aloe vera juice, sometimes pear juice or apple juice and Saturday I had to give her a liquid suppository.

We are trying to do everything preventative to make sure this doesn't happen again but will talk to her pediatrician about other recommendations.

Her seizure count seemed to improve late last week and through theweekend but today has been bad. She has already had 6 clusters of her most active or large seizure kind (involving arms, legs and head). We are now at 52 of the last 53 days where Cailyn has had numerous seizures.
Tuesday 9
Wednesday about 8 with 4 coming between 7 and 8 pm

The next 4 days seemed to be her lightest and were smaller seizures, some were just mouthing and head movements
Thursday 3
Friday 4
Saturday 3
Sunday 3
Monday 7 big ones again

Her medicine level is as follows
Topamax5ml
3 times a day for the steroid
1.5ml kepra

then Sunday we dropped down to 5ml 2 times a day for the steroid

Other medicine she is taking
1/4 tsp Zantac 2 times a day instead of the Prevacid
1ml of baby multi-vitamin
1-2 ounces of Aloe Vera Juice
1/4 capsule of probiotics which we got from her pharmacist

So the follow up from the neurologist was we upped her Kepra to 2ml 2 x a day and if she doesn't have improvement next week we'll be adding in the Lemictal. When we add in the third anti-convulsent then we'll be able to lower the Topamax and eventually take that away.

Cailyn is going to be 8 months old on Wednesday. It would be nice if she were able to shake out of this some time soon. September 1 is still the last smile.

Other possible treatments we are going to examine are meeting with a dietitian, checking on allergies and also craniosacral therapy. This would also help her head shape.