Wednesday, August 30, 2006

Pictures speak louder than words...

Sophie loves to stick her foot out when she is sleeping. Oh, how I love those feet!

Sophie found her feet. Those toes taste yummy.

Sophie learning how to use a sippy cup.

Sophie looking at her reflection in the floor.

Sophie playing with everything but her toys. Though, they do make a good headrest.

As you can see from the pictures, Sophie is learning so many new things. She is such a happy baby. Her personality is really starting to shine through.

Monday, August 21, 2006

Much better day...
I just want to let you all know that Sophie had a much better day today. Yesterday was just a fluke!!!

Sunday, August 20, 2006

Easing back into the real world...
We are slowly reemerging into the world outside our bubble. From the day Sophie started the ACTH treatment (which was May 11, 2006 - the day she turned 7 months old), we had to keep her somewhat isolated. As you know, we are now able to take her wherever we desire. Easier said than done. As some of you know, I am slightly (just slightly - hah!) germaphobic. Sophie, on the other hand, wants to touch everything with her hands AND MOUTH (yuck)! Oh, and she is so incredibly excited to see new people and new things. Leave her toys behind - those are boring. If someone even glances in her direction, she lights up. Her smiles can melt anyone's heart. She does this whole body smile. Her arms and legs kick out. Her head tilts back. Her eyes light up and she has this wide open mouth grin. It is so adorable. The only problem is - it is so inviting. So I keep my guard up, try not to let strangers get too close, and if they do, keep lots of antibacterial wipes handy. As the months go by and I am more confident that her immune system is stronger, then hopefully, I will be less paranoid.

Seizure update... She is still having them. Today was not a good day. I will be calling the doctor first thing tomorrow morning to discuss her medication level. She is currently on 105mg/day of Topamax. She started at 30mg/day and we have been increasing it by 15mg every week. She had about 60 seizures today compared to 10 seizures a day she was having. I believe she is teething, which I have heard can increase seizures. A lot of things can cause an increase in seizures or even cause a child who gained seizure control to start having seizures again, such as ear infections, the flu, teething, etc. Also, I have heard that an increase in medication can cause an increase in seizure until your body adjusts to that level of medication. The other day, I read an article that quoted a professor of neurology that said "All of our seizure medications are controlled poisons, all with significant side effects". With all that said, we will probably not know why her seizures increased today, but hopefully today was just a fluke.
Pictures from the family get together at the Lake of the Ozarks, Missouri - August 11-13th.

Sophie's first time in a swimming pool.
Sophie playing with her cousin, Nicholas.
Big sis, Haley, tubing off the back of the boat.

Monday, August 14, 2006

Sorry about not posting more often...
I just feel like I say the same thing over and over. I wish I had some good news to share. Well, I guess I do have good news but it is just overshadowed by the fact that she is still having seizures. The good news is that we can now take Sophie out in public. I am so paranoid about it, though. I spoke with three doctors before taking Sophie to our family get together this past weekend. I spoke with Sophie's main pediatric neurologist and he said it was okay. Then I called her pediatrician and she said it was okay. Finally, I spoke with another pediatric neurologist (while we were getting a second opinion on Sophie's overall treatment) and he said it was okay. With all that said, I was STILL paranoid about her immune system. Well, it's Monday and we survived the weekend. Actually, we did more than survive, we had a great time. Sophie got to spend time with her cousins whom she had missed incredibly and go swimming for the first time. Before Sophie became sick, we would spend so much time at my sister's house while Brandon was traveling out of town. This is actually the first time Sophie really got to play with them since she became sick. There was the occasional visit at the park but she was never allowed to get too close.

About that second opinion... We met with a pediatric neurologist last Wednesday to get another opinion on Sophie's treatment options. He agreed, for the most part, on the care Sophie is currently receiving. It is what happens next, if the Topamax does not work, that is debatable. There is one drug, Vigabatrin, that is considered a first line treatment for Infantile Spasms that is not FDA approved (but still easily accessible in the USA). Vigabatrin is highly regarded in Europe and Canada but is still being researched in the United States due to some of the serious side effects. Well, our current ped neuro is against it while the other ped neuro said he would highly consider it. Gaining seizure control is so important. The longer she has seizures, the less chance she has of ever gaining seizure control with Infantile Spasms and the higher the chance the Infantile Spasms will turn into another seizure type. I am most afraid of Lennox-Gastaut syndrome as there is a close relationship between Infantile Spasms and Lennox-Gastaut syndrome. Lennox-Gastaut syndrome is a severe form of epilepsy that is very difficult to treat. So that is why it is so important that we choose the drug with what we believe has the highest possibility to control the seizures.

Wednesday, August 02, 2006

Doctor visit...
We went to the neurologist today. Not much to say except we are increasing her Topamax from 60mg/day to 75mg/day. We are also going to decrease her B6 from 200mg/day to 100mg/day for the next 2 weeks. If there is not an increase in seizures over the next 2 weeks, then we will stop the B6. She is STILL HAVING SEIZURES. It has been 85 days since she was diagnosed with Infantile Spasms and about 130 days since the seizures started. We talked a little about what the long term possibilities are for Sophie. I am trying to come to terms with the fact that this is something that we are going to have to deal with for many years to come - whether we are worrying about a relapse or whether or not the infantile spasms will turn into a different kind of seizure. We hope to gain seizure control with Topamax. We hope to gain it very soon. I know I should just concentrate on what is happening today; but, as a parent, I cannot help but wonder what the future holds for my precious baby girl - whether if she will never have another seizure again or whether if she will become an accountant like her mommy and daddy (let's hope not!).