New drug...
We started Sophie on a new drug today - Topamax. I am so scared to find out how she is going to react to this drug. Our neurologist decided to start Sophie on a new drug since she is starting to have more seizures. She is still having around 3 clusters a day but the number of seizures within the clusters are increasing. Her seizures are still mild but just not as mild. Not much else to say except I no longer see the light at the end of the tunnel. She is developing so well and her personality is shining through - it is just these SEIZURES WON'T GO AWAY!!! We had such a great day yesterday and I was so excited for Sophie...and now this - a new drug. I guess I knew it was coming but I just wanted to believe she was going to become seizure free with ACTH. Now I don't know what to believe. Her neurologist does not think she will become seizure free with Topamax but that it will help reduce the number of seizures.
4 comments:
Oh, Elaine, I can feel your disappointment! It is a blow that she has to start a new drug. The unknown is always so scarey!!!
She tolerated the ACTH so very well and now that she's coming off it she just shines. I'm sure you're more than concerned that the Topamax will slow her down some, but she just might tolerate it as well as she did the ACTH. The possible side effects of these drugs are just that...POSSIBLE... and even when one does experience some of the side effects they often decrease once a person adjusts to the drug. I'm praying this might be the magic bullet to ease those seizures back while her body works on getting them resolved altogether.
All of her cheerleaders here are sending you our prayers and I know her "Guardian Angel Entourage" (led by Grandpa Charlie)are with her 24/7. We're all behind you and we're just going to send positive thoughts... the "Entourage" can flap their wings... and hopefully blow away some of the dust created by the Topamax so you can see there is still that light at the end of the tunnell. It's just going to take longer to get there than any of us thought!!
Hang in there, Sophie, and enjoy your new found mobility.
Love and Kisses,
Aunt Barb
Damn she is cute!!!!!!
Hello,
Jason sent us the link and I just read all the posts and the beautiful pictures of all of you. Sophie is so sweet and Haley is getting so big. With so much love and support Sophie has nothing but the best in front of her. We are thinking of you and want nothing but good things for all of you.
Love to you all!
Elaine, Sophie has improved so much with ACTH. She is now bigger and stronger, and definitely will cope better with the new drug. Hang in there! Please remember that we are all here for you...
Vivian Liu
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