Wednesday, February 18, 2009
Confusion takes its toll
Well, lets start with the progress we have been making before we get into the sheer frustration and anxiety of choosing a med.
Over the past several days I've been noticing Monkey using her right leg more. She always has used it, but these last few days she has been a kicking maniac in her crib, and I've noticed that her leg is moving with a more fluid motion. (not the locking type motion she has had) She has also been lifting her legs up together using her lower abdominal muscles, and is bringing her legs up bent together. Before she would really only get her left leg part of the way up in front of her, now she is getting both of them up. She is also moving her right arm around more which I've noticed today. During PT today she was holding on to a toy on the floor mat with her right hand over her head (Jaime put her hand on it) and she took her left hand while still holding it in her right and started grabbing the toy. These are all HUGE developments for her. I've also noticed that her head isn't as wobbly when she is sitting up (supported still). I can't believe the change in her movement. Jaime said she was really loose today. I think she was tired because she was letting Jaime put her on her side and staying there with no complaints. We'll see how tomorrows PT goes. So, I'm very enthused about the leg movements and improvements with the arm.
Then there is the meds. We've essentially topped off with the Topamax right now (200mg / day). She was on 225mg but we had to drop a pill per the NYU neuro because she was so lethargic and really not eating well. Local neuro started her on Depekene last Thursday, and we were supposed to be on a increasing dose for the next 2 weeks. I had left a message for NYU last week because I wanted to talk to him about possibly going to Vigabatrin, but I forgot he was on vacation. I waited for him to call me yesterday but he didn't , so I left another message today. He called back this afternoon, and after I filled him in on what was going on he decided it would be best to drop back the Topamax dose and really treat aggressively with the Depekene right now. He said if we don't see a response in a few weeks, his recommendation would be ACTH. I spoke with him briefly again about Vigab, and he said if she had TSC (tuberous sclerous) he would DEFINITELY go with Vigab, but his thought right now is that ACTH would be more effective. He did tell me to get some other opinions, speak with other dr's about what they think we should do for treatment and then we can discuss treatment options again in a few weeks. I emailed Dr Chugani (from Detroit) and he said he would DEFINITELY go with Vigab starting at 250 mg (I think twice a day..can't remember. Have to look up the email) So that really pushed me to want to do Vigab, but now I am to the point where I will do whatever I have to. I have to call him next week to let him know how she is doing on the increased Depekene. So once again I am back in the ACTH vs Vigab boat. The struggle with how do I choose is killing me. What choice do I make? How do I know if it's the right choice, what if it is the wrong choice? Can I do the ACTH?? Do i have it in me? I know I will because I have to...but I worry all the same. I feel like I did before we went to see Dr. Miles for the first time. Lost, scared, confused, mad, sad, anxious, numb. Numb is a good adjective. Except for the stabbing pain in my head I've had all day courtesy of yet again another migraine.
So, that is what we are up to right now. We started the increase in depekene and decrease in Topamax tonight. We go to the ped on Friday for a general check up and weight check (he is so good..he has me come in every month to check on her) So, hopefully we will see a change with the increase in Depekene. Keep your fingers crossed for us!!
Thank you all as always for your support!!