Wednesday, October 18, 2006

What do I do?

I hate this!!! There is so much unknown about Sophie's disease. I am not a doctor, yet I have to make so many medical decisions about Sophie. Every doctor has a different opinion and I have to make the final choice. Who do I listen to? What drugs should Sophie be on? What test should be performed on Sophie? I DON'T KNOW!!! I can research, research and research, but in the end, all the information out there is all so contradicting. I am so overwhelmed right now. All I ever want to do is cry but that gets me nowhere.

So what is the dilemma? One neuro told me to completely stop the Vigabatrin the day we are to start Zonegran and to slowly wean the Topamax. The other neuro told me to slowly wean the Vigabatrin when we start the Zonegran and NOT to wean the Topamax. Topamax and Zonegran are very similar drugs - is it really okay for Sophie to be on both? There is such a delicate balance with Sophie right now. Any little change can make her seizures worse. We already tried weaning Topamax and her seizures became worse, so we stopped the wean and brought it back up. The last few days, her seizures seem to be worse - is it the increase in Vigabatrin or is it her cold?

It will be another 6 months before we get another PET scan to determine if Sophie is truly a surgical candidate or not. It the meantime, I will be researching, researching and more researching. Where do I go for another opinion? I want the best for Sophie, but where do I go? There is no magic website out there that tells you who is the best pediatric neurosurgeon in the country. I have heard wonderful things about the surgical team in Detroit, but do I not get a second opinion? It is all so scary.

Really, I am just an emotional wreck right now. I started crying when I thought about leaving Sophie to go on a weekend ski trip in January. This is so not how I pictured things. When I was pregnant with Sophie, I was like - I will have no problems leaving her with family to get away once in awhile... it will be good for both of us. I also did not know if I would feel comfortable breastfeeding her and told myself I had to do it until she was 6 months old. Well, now she is a year old and I can't seem to stop. I was suppose to start weaning when we got back from Detroit. I think that I was just so consumed with the Detroit trip and Sophie's 1st birthday party, that I did not allow myself to stop and think about everything that was going on. Now that I have had a chance to stop and think, it all seems too overwhelming. Oh, to help with my emotional instability is the fact that Sophie decided to stop sleeping through the night about 3 weeks ago. The hours between midnight and 5am are a complete blur to me.

Oh, I almost forgot to mention that we have a pediatrician appointment this afternoon for Sophie's 1 year checkup and also to discuss whether or not we resume vaccinations. Though, I do not believe that vaccinations can cause a seizure disorder, I do believe it can make it worse. On the Center for Disease Control and Prevention website, it lists under the DTaP vaccination the following under true contraindications: "Progressive neurologic disorder, including infantile spasms, uncontrolled epilepsy, progressive encephalopathy; defer DTaP until neurologic status clarified and stabilized". Both neuros that we spoke with said it was okay to resume vaccinations but do we resume vaccinations when Sophie's neurologic status is not stabilized? What is worse - the possibility of catching a disease she is not immunized for or an increase in seizures?


Great Aunt Barb said...

I can tell you feel like you're trapped in a never ending nightmare. I only wish there was a way to wake you and have it all go away. No matter how we try I know we can't even imagine the torture you endure every day trying to find an answer for Sophie.

At times I bet your head could just explode weighing all the different opinions and options and then being the ones to make the final decision!! Don't doubt any of the decisions you have or will make in the future. Sophie could have no stronger advocates than you and Brandon. If you spoke to 20 experts you would probably get 20 variations on treatment know Sophie best!! After you weigh what you find out you'll make the right decisions for her.

You know there are hundreds of people who love all of you and I'm sure you could call any one of us, even in the middle of the night when Sophie just wants to be awake, laying on your shoulder, twirling your hair in her fingers and sucking her thumb. We can pray with you, listen to you. I only wish we could do more.

Sophie isn't the only brave person in the family. She comes by it honestly. You and Brad are full of courage and determination!! It's proven every day when you get out of bed, take a deep breath and put one foot in front of the other, plaster a smile on your face for your little angel... letting her know that no stone will be left unturned until you find the best treatment for her.

If there is anything you need from any of us just ask. We're here for you.


Anonymous said...


I'm so sorry you're struggling right now. I certainly feel for you. It would be nice if there were a "recipe book" out there that told us what to do. You know this already, but in the end you have to go with your gut & do what you think is right for Sophie & your family. I wish I could be of more help to you, but at least know that we are sending our best wishes and warmest thoughts your way. And we know that you're doing the very best you can & Sophie couldn't be luckier than to have you as a mommy!

--Leslie & Jordan