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!!



Carrie said...

This is the second time I've watched the video (first on FB), and it is so amazing how similar in action our two girls are (well, not so amazing since they are just days apart)!

I'm so excited to hear about her physical progress. I will admit, I don't know how you keep up with all the meds, I was getting confused just reading it!

Give her hugs for me and Hannah!

JSmith5780 said...

On a positive note... there is some fantastic movement with her legs. Ok so I don't know how she was before BUT she doesn't look any different than my "typical" kids did at that age! Also positive, you actually heard back from Miles... whether it was what you wanted to hear or not.

Is he going to have you lower Top and increase Dep at the same time? I am glad he set a timeline for response or not.

On a negative note.... WHY are so many neuros stuck on the Vigab/TSC combination. Yes it's more effective in those kids, but that doesn't mean it WON'T work on just IS kids. It frustrates me to no end!! Did you tell Miles Chugani recommended it? If not, you should, even send him the email and THEN see what Miles says.

Can you do ACTH? Absolutely! Is it going to be a pleasant experience? Highly doubtful, but if it works, who cares. I am glad you at least have a semi- go forward plan. Keep me posted if there is anything I can do.


P.S. Did you get an appointment scheduled to see Miles again?

Marissa said...

ACTH is your best friend, or your worst enemy, and sometimes both. The Vigabatrin/Sabril is a good drug, but ACTH still holds the best chance for “normal” development. Yes, there’s anger, baby acne, cushingoid cheeks, daily shots, and massive expense. Sure, it’s not 100% that the baby will be cured- Marissa wasn’t. I know your little girl had other issues at birth, but ACTH is still the go-to drug.

It’s a crapshoot, like all the other meds we give our kids for this disease. The odds aren’t even as good as 50/50 for no seizure recurrence. Questcor is evil in their pricing of this drug. It’s a drug that weaves it’s tendrils through every facet of your life while administering it- no sleep, no money, no time. It does work for some. The numbers may be better for recovery the closer to initial onset of the seizures to the first dose.

ACTH doesn’t preclude vigabatrin later. The longer you go before you try it, it may affect the odds of it working. Your call, Mom. You’ve got the strength and the will to do anything you need to do for your little monkey.

-Marissa's Dad

Ellen said...

She is moving her legs really, really well! They remind me of how Max moved his legs at her age, and he is walking around really well now.

Ma said...

Hey Karen,
I just found your blog, and I've read all your info. I'm so sorry you have to go through all this stuff. I feel so bad for you all. My heart goes out to Larry, because what you wrote reminds me so much of Poppers and how he felt after his surgery, and all his problems. Tell Larry not to sweat it, there is a reason for everything. God has a plan, and if Larry is feeling bad because you couldn't make that trip, I am sure there is a very good reason you didn't go. Something would have happened if you went. Trust in God. Know He's in Charge. Focus on your marraige, and all else will follow. I always thought people had things backwards...if you put your marraige first, the the kids will automatically be happy. Because then the whole family is first. But Mom and Dad have to be happy, so if you guys just chill, rub his feet, let him rub yours;) and relax. Things will bet better. Charli will be the best Charli you could ever imagine. And your marraige will be strong. Crying is natural and normal. It's good for you. You ARE NOT A FAILURE!!!! You are human, and dealing with stuff that most people couldn't ever think of dealing with. God gave you someone very precious and special. He knew you and Larry could handle her. She has something very valuable to teach the world. And so do you guys.
Know you are being prayed for, and we are sending love to you all ways! Hugs from your Northern Ma...xoxoxo