New drug...
We started Vigabatrin (brand name is Sabril) yesterday (250mg 2x/day). Here is a brief summary of the drug:
"Sabril was developed by a research laboratory in France in 1977. Unlike many other seizure medicines, which are discovered by accident, it was purposely developed with a specific plan in mind—preventing the breakdown of GABA, a neurotransmitter that inhibits brain activity. Sabril was first marketed in Europe in the late 1980s and was approved in Australia in 1993 and in Canada in 1994...Unfortunately, as many as 25% of patients who take it for a long time suffer damage to the retina of the eye, which limits their field of vision. Because of this safety issue, the FDA has refused to approve Sabril, and its use has been restricted in some other countries."
Friday, September 29, 2006
Sunday, September 24, 2006
Sophie is growing! And this time, we don't mean in weight...
We see the beginnings of Sophie's first tooth. All it is right now is a tiny little white nub, but it is coming - FINALLY. She is drooling like crazy.
Sophie is also starting to babble more. Several times a day, she will say "dah" and "dee". And sometimes, she will even say "daaah deeee".
Sophie can pick up her own sippy cup now. She can actually lift it up, put it in her mouth, and tilt her head back. For awhile she would just stick it in her mouth and get frustrated that nothing would come out. Then she realized she had to tilt in up. She LOVES her sippy cup. The only thing she will drink out of it is water - no juice, no milk. Once we get back from Detroit, we are going to try to transition her to milk.
Now for the big news... Yesterday, Sophie transitioned from laying to sitting!!! SO EXCITING!!! I am so proud of her. She was laying on the floor and I was changing her diaper. I went to grab some lotion and when I got back she was sitting up. I was in shock. I knew she was laying there when I got up because I was coming right back to put a diaper on her. Well, she has done it several times since then. It still takes her a lot to get there, but she does it. Of course she did this when her big sister was around. Sophie just lights up around Haley. I know I have said this many times, but Sophie gets the biggest smiles on her face as soon as Haley walks into the room. It is so precious. I just love my girls!!!
We see the beginnings of Sophie's first tooth. All it is right now is a tiny little white nub, but it is coming - FINALLY. She is drooling like crazy.
Sophie is also starting to babble more. Several times a day, she will say "dah" and "dee". And sometimes, she will even say "daaah deeee".
Sophie can pick up her own sippy cup now. She can actually lift it up, put it in her mouth, and tilt her head back. For awhile she would just stick it in her mouth and get frustrated that nothing would come out. Then she realized she had to tilt in up. She LOVES her sippy cup. The only thing she will drink out of it is water - no juice, no milk. Once we get back from Detroit, we are going to try to transition her to milk.
Now for the big news... Yesterday, Sophie transitioned from laying to sitting!!! SO EXCITING!!! I am so proud of her. She was laying on the floor and I was changing her diaper. I went to grab some lotion and when I got back she was sitting up. I was in shock. I knew she was laying there when I got up because I was coming right back to put a diaper on her. Well, she has done it several times since then. It still takes her a lot to get there, but she does it. Of course she did this when her big sister was around. Sophie just lights up around Haley. I know I have said this many times, but Sophie gets the biggest smiles on her face as soon as Haley walks into the room. It is so precious. I just love my girls!!!
Saturday, September 16, 2006
Where do I begin...
So much has happened since I have last posted. Sophie has started Kindermusik which she absolutely LOVES. Kindermusik is a class that we go to with other babies around her age and we sing songs and dance around. It is great social interaction for her. Some of the other babies will crawl up to her and she tries to give them "hugs" - more like grabs them and tries to lick them. She is so alert during the class, with her eyes wide open, absorbing as much of what is going around her as she can. I am so glad my sister convinced us to sign up.
I don't think I posted this before... Sophie has a physical therapist and a developmental therapist each coming to our home once a month. The exercises the physical therapist has given us has been incredibly helpful. Sophie keeps getting stronger. Sophie has graduated from doing a lot of tummy to time to working on transitioning from sitting to laying and vise versa. We are also currently working on high kneeling and belly crawl. The physical therapist thinks she is making great progress.
Third opinion... We are going to get another opinion. This time from a pediatric neurologist up in Detroit. Quite a few people from my support group have seen him and they have traveled from all over the world. He knows a lot about Infantile Spasms and has even convinced my local neuro that Sophie needs a PETscan and also to start Vigabatrin (both of which my local neuro did not think was necessary at this time when I discussed it with him). I had to have my local neuro write a prescription for the PETscan. So when I contacted him, he wanted to discuss it with the neuro in Detroit. I am grateful that my local neuro took the time to discuss these things with the other neuro and kept an open mind about everything. My local neuro does not pretend to know everything about Infantile Spasms and is working with us to get the best care for Sophie. But it is up to Brandon and I to push the issues and to do the research on different options for Sophie - which can be very overwhelming at times. I feel the weight of my daughter's world on my shoulders and the decisions that I have to make for her feel so heavy at times. But I feel so fortunate to live in a society that gives me the opportunity to get great care for my daughter and allow us to get a second opinion, or third opinion...
So, we are heading up to Detroit in the beginning of October for Sophie to get a PETscan, 24 hour video-monitored EEG, and a meeting with the pediatric neurologist. I am so anxious to find out what he has to say.
The part of the post that I hate to write... Sophie is still having seizures on a daily basis. We are up to 150mg of Topamax (50mg 3x/day). I cannot wait until she is off that drug - I think we are wasting our time with it. We are waiting to receive the Vigabatrin in the mail (we had to order it from Canada). It can take anywhere from one to three weeks to receive it.
So much has happened since I have last posted. Sophie has started Kindermusik which she absolutely LOVES. Kindermusik is a class that we go to with other babies around her age and we sing songs and dance around. It is great social interaction for her. Some of the other babies will crawl up to her and she tries to give them "hugs" - more like grabs them and tries to lick them. She is so alert during the class, with her eyes wide open, absorbing as much of what is going around her as she can. I am so glad my sister convinced us to sign up.
I don't think I posted this before... Sophie has a physical therapist and a developmental therapist each coming to our home once a month. The exercises the physical therapist has given us has been incredibly helpful. Sophie keeps getting stronger. Sophie has graduated from doing a lot of tummy to time to working on transitioning from sitting to laying and vise versa. We are also currently working on high kneeling and belly crawl. The physical therapist thinks she is making great progress.
Third opinion... We are going to get another opinion. This time from a pediatric neurologist up in Detroit. Quite a few people from my support group have seen him and they have traveled from all over the world. He knows a lot about Infantile Spasms and has even convinced my local neuro that Sophie needs a PETscan and also to start Vigabatrin (both of which my local neuro did not think was necessary at this time when I discussed it with him). I had to have my local neuro write a prescription for the PETscan. So when I contacted him, he wanted to discuss it with the neuro in Detroit. I am grateful that my local neuro took the time to discuss these things with the other neuro and kept an open mind about everything. My local neuro does not pretend to know everything about Infantile Spasms and is working with us to get the best care for Sophie. But it is up to Brandon and I to push the issues and to do the research on different options for Sophie - which can be very overwhelming at times. I feel the weight of my daughter's world on my shoulders and the decisions that I have to make for her feel so heavy at times. But I feel so fortunate to live in a society that gives me the opportunity to get great care for my daughter and allow us to get a second opinion, or third opinion...
So, we are heading up to Detroit in the beginning of October for Sophie to get a PETscan, 24 hour video-monitored EEG, and a meeting with the pediatric neurologist. I am so anxious to find out what he has to say.
The part of the post that I hate to write... Sophie is still having seizures on a daily basis. We are up to 150mg of Topamax (50mg 3x/day). I cannot wait until she is off that drug - I think we are wasting our time with it. We are waiting to receive the Vigabatrin in the mail (we had to order it from Canada). It can take anywhere from one to three weeks to receive it.
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