It has taken me a few days to even think about posting about what we discussed with Dr. Chugani. I had to take it all in. I had to try to wrap my mind around it. So much of Sophie's future was discussed. I keep reminding myself that Sophie is still Sophie. Nothing has changed. What we discussed was all speculative. We have not written Sophie's future. We do not know Sophie's future. I am trying to be patient. To be so blessed to watch Sophie's future unfold. That is what I tell myself. I just need to believe it.
Sophie had about 65 seizures that we noted on the sheet of paper we filled out while we intensely watched her from 12:30pm on Sunday to 8:30am on Monday (about 20 hours). I am not sure if she usually has this many seizures...it seemed a little high. I have not watched her that intensely for quite a while. After counting for so long...you just don't do it anymore. It takes a lot of energy. Especially when she has seizures all day long. To either mentally note the seizures to write down later or to constantly get up and find that notebook to write them down. I hate doing it. One day, I just decided not to do it anymore. Every once in awhile, usually with a medication change, I will take note.
So, between the EEG and PET scan, they had a lot to review. The conclusion...more testing needs to be done. An MRI and a different type of PET scan (AMT PET scan). To summarize what we discussed with Dr. Chugani...
There are no medications that he suggests at this time. We have tried everything that could quite possible work. He said we could try to wean the Clobazam . We haven't yet and if we do then Sophie would be completely medication free. She has been on one (if not several at the same time) drug or the other since she was 7 months old.
He believes that Sophie has a focal point and will most likely be a surgical candidate. Sophie is just not allowing us to see it at this time. We need to be aggressive now and try to find it. We will start with the MRI and AMT PET scan. Then, if need be, we will do a FMZ PET scan. Sophie continues to develop in spite of the seizures and that tells him that there is a focus. She would not continue to develop as much as she has if the seizures were coming from both sides of the brain. The preliminary results of the FDG PET scan (the one that Sophie had done last week) showed a small abnormality in the left parietal lobe. He noticed nothing on the right hemisphere of the brain. But the EEG is chaotic on both sides of the brain. He does not have enough evidence at this time to present the case in front of the surgical committee but he believes with the additional testing we will get there.
So we will do the additional testing. We will hope and pray that Sophie will be a surgical candidate. But all the while hoping and praying for nothing short of a miracle.
Sophie had about 65 seizures that we noted on the sheet of paper we filled out while we intensely watched her from 12:30pm on Sunday to 8:30am on Monday (about 20 hours). I am not sure if she usually has this many seizures...it seemed a little high. I have not watched her that intensely for quite a while. After counting for so long...you just don't do it anymore. It takes a lot of energy. Especially when she has seizures all day long. To either mentally note the seizures to write down later or to constantly get up and find that notebook to write them down. I hate doing it. One day, I just decided not to do it anymore. Every once in awhile, usually with a medication change, I will take note.
So, between the EEG and PET scan, they had a lot to review. The conclusion...more testing needs to be done. An MRI and a different type of PET scan (AMT PET scan). To summarize what we discussed with Dr. Chugani...
There are no medications that he suggests at this time. We have tried everything that could quite possible work. He said we could try to wean the Clobazam . We haven't yet and if we do then Sophie would be completely medication free. She has been on one (if not several at the same time) drug or the other since she was 7 months old.
He believes that Sophie has a focal point and will most likely be a surgical candidate. Sophie is just not allowing us to see it at this time. We need to be aggressive now and try to find it. We will start with the MRI and AMT PET scan. Then, if need be, we will do a FMZ PET scan. Sophie continues to develop in spite of the seizures and that tells him that there is a focus. She would not continue to develop as much as she has if the seizures were coming from both sides of the brain. The preliminary results of the FDG PET scan (the one that Sophie had done last week) showed a small abnormality in the left parietal lobe. He noticed nothing on the right hemisphere of the brain. But the EEG is chaotic on both sides of the brain. He does not have enough evidence at this time to present the case in front of the surgical committee but he believes with the additional testing we will get there.
So we will do the additional testing. We will hope and pray that Sophie will be a surgical candidate. But all the while hoping and praying for nothing short of a miracle.
5 comments:
Elaine...I have chills but no words. No spoken words...but my heart is praying for a miracle alongside you!
...danielle
Elaine,
I'm always praying for Sophie and your family. I hope Chugani can bring you guys closer to seizure freedom!
I have been waiting for you to post again. There are no words.....hoping and praying for that miracle too... and rejoicing at all of the great things that Sophie can do and what a precious gift she is! Hugs....Jennifer
Our fingers are crossed as you continue to press on that Sophie will have a cure.
Love, Barb
One thing I have no doubt of is that you will get through WHATEVER is placed before you.You are that strong.Sophie is that strong.HE is that strong.It is amazing that we come to a point where we are praying that surgery is an option.No one could possibly imagine the absurdity of "praying for a surgical option" unless you have held your seizing child.Our prayers are with you as you continue this journey.
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