Hi friends, family and followers, Please visit Bittersweet over on ChicagoNow (link below).
I wrote a short entry on Abby, your support, Jonylah Watkins and and an angry reader.
Until next time, love each other…
Please “like” share, follow, let me know you were here and at Bittersweet.
I get you. I write because, while not paid to do so (maybe I should re-think that?), it helps me understand the emotions better. It helps me comprehend the situation better with my daughter. It forces me to research something that I had zero interest a year ago. As a result, it makes me a better parent, caregiver, and husband. I enjoy writing.
We tried Keppra and it didn’t work for our daughter. She is now on Trileptal too, at a really high dose with little or no help. She is on Sabril too, and when we tried to wean her off, it became clear it was doing more than we thought to control the situation. The side effects seem pretty benign with addition of the Trileptal, (kind of like the additional seizure control).
My heart goes out to Watkins family.
Hi Ken, thank you for reading and replying! I know, until 22 days ago I NEVER thought about epilepsy, seizures, anti-epileptic drugs, side effects of drugs…NONE of it..She is a normal healthy kid!
Now, I have been reading so much and learning so much about epilepsy. Writing really is helping me untangle all the different details and new information clogging up my brain!And really, talking with others is such a huge help! I learn stuff that I don’t hear from the doctor…We went off Keppra because her personality was changing and she was acting out at school, and she never gets in trouble, so we knew it was the medicine. Also when she had her third seizure at school he added on the Trileptal so we were going to wean her off the Keppra anyway. We jus did it a little quicker since it was affecting her behavior.. Oh I know, the Watkins story is such a tragedy! It is awful! Did you read the first post I wrote on Bittersweet at ChicagoNow about her that the guy “Waffle” responded to so hostilely? He was so angry. I think he needs to learn why he is so angry…..How is your daughter doing?
Yes I did read the original post and comments by ‘Waffle’. I agree with your analysis. He was full of rage and it came through in his words quite clearly. Misguided reply for sure. The swearing shows his immaturity as it degrades the quality without doubt. Maybe he is related to the story somehow?
Anyway… Savanna is doing good. I added Onfi back to her daily cocktail (as we call in the pediatric epilepsy sector) and it seems to be keeping the complex partial seizures at bay for now. Unfortunately, she is still seizing (partials). Surgery is still a ‘go’ for April 1. We can’t wait, simply put.
I am interested to know more about your experience with Trileptal. What is her target dose (mg/kg/day) and when do you think she will reach it?
Do you use FB?
Hi! We have been working our way up to 900 milligrams a day, so 450 twice a day..She is now taking that dose since Tuesday. So far so good…..Fingers crossed!
Yes I am on Facebook, but I don’t know why, people who try to find me say they cannot find me….Are you on Facebook? I can look you up…I will pray for your baby girl April 1….So hope this is the ticket to freeing her from seizures..Poor thing, and poor mom and dad, I’m so sorry….It is so scary!
How much does your daughter weigh?
You are right, I couldn’t find you. Your linkedin profile comes up first know matter how you search. Not sure if you read my post on ‘Rethinking…FB’, – I am not a fan of FB. But, I have to say I have new found respect for its power. I am connected to many people now navigating similar if not the same waters of epilepsy in children. I was going to suggest searching for support groups there. You probably already know this though…
It has been a really long road even though she only 18mo old I am surprised at how healthy she is despite everything. We have learned this journey has a number of forks in the road. Some of them are just a gradual bend at first but then transition to a decreasing radius, off-camber hairpin – quickly. The last post about the pre-op clinic visit with the neurosurgeon really kind of sums up our situation, as we approach the next fork in the road. This time though, we are approaching a stop sign. And, her change of direction while significant, will be controlled and measured – unlike the past. Oh what the future holds!
I really hope the Trileptal helps your daughter without too many of the side effects.