During the VMR...
Getting prepped for the VMR...
It's amazing how much can change in six days...
The cold, rainy Texas 40-ish temps when we left were replaced with sunny, warm mid-70 temps when we returned from Detroit.
The barely budding azaleas in my front yard the week before are in full bloom now...
There was no visible sign of that dilapidated old house down the road -instead, there was a completely framed new one right next to the bare ground where the other once stood...
And, that anticipation I've held on to for months was replaced with a new found sinking feeling...and confusion.
What we found when we got there was the complete opposite of what we were seeking. The suspicion of a left parietal focus turned out to be possibly a large right hemispheric focus involving the right temporal cortex, right frontal cortex and possibly the right parietal cortex. And, the final report before we saw Dr. Chugani stated that Austin could be a surgical candidate.
That was before we saw Dr. Chugani...
When he came in and talked to us, he talked about how well Austin is continuing to develop (even though he is still quite delayed). He said that kids that continue to progress despite the seizures are typically the kids that are the surgical candidates. I gathered from his comments that it was because those are the kids that usually only have one affected side (or the majority of the issues are located on only one side of the brain). This all sounded very positive...especially when he said his gut feeling was that Austin is a surgical candidate.
That was until he had time to observe Austin and talk to us a bit more about his behaviors. Austin is obviously left-handed (which does not support the indication of the right-sided problem). He also grabs and slaps at his right hand...which clearly signals a left-sided problem (remember that a problem on either side of the brain controls the opposite side of the body).
So....instead of getting and soaking up all the good news he came in to bring...we were all left with confusion. His decision was to schedule another PET scan the following day. This time with a different tracer which would attach itself to the GABA receptors which are usually affected in epilepsy. It is still under research and we would be a part of the study so it was free.
That also revealed right-sided abnormalities...but there were small issues on the left side as well. Without a confirmation from the VMR (it was still extremely chaotic from the hypps), we had nothing else to go on.
We are probably dealing with bilateral problems -more specifically, multifocal cortical dysplasia. He said that there is no next step until his EEG clears up -which it will eventually, but it could be a year or so. Then, we could maybe get a more detailed look at where the seizures are coming from. There were no seizures caught on the EEG because of the hypps...it was too crazy to depict specifics.
Our plan...continue with new med trials (he suggested Banzel and Topomax) or the keto diet. Keep up with routine EEGs until the hypps go away and try another PET then.
He also said that our current doctor is one of the best and to keep with him...but, he also suggested another one in the area (the one I tried for in the beginning). I will get on the waiting list today to see him. As much as we hate our current hospital, he said it is the best one we could go to in Texas and to stay put. He frequently works with them and knows their capabilities.
But, the most important thing he said was, "I really believe that Austin's seizures will come under control."
That's what I desperately needed to hear.
(By the way, the MRI was clean)
It's amazing how much can change in six days...
The cold, rainy Texas 40-ish temps when we left were replaced with sunny, warm mid-70 temps when we returned from Detroit.
The barely budding azaleas in my front yard the week before are in full bloom now...
There was no visible sign of that dilapidated old house down the road -instead, there was a completely framed new one right next to the bare ground where the other once stood...
And, that anticipation I've held on to for months was replaced with a new found sinking feeling...and confusion.
What we found when we got there was the complete opposite of what we were seeking. The suspicion of a left parietal focus turned out to be possibly a large right hemispheric focus involving the right temporal cortex, right frontal cortex and possibly the right parietal cortex. And, the final report before we saw Dr. Chugani stated that Austin could be a surgical candidate.
That was before we saw Dr. Chugani...
When he came in and talked to us, he talked about how well Austin is continuing to develop (even though he is still quite delayed). He said that kids that continue to progress despite the seizures are typically the kids that are the surgical candidates. I gathered from his comments that it was because those are the kids that usually only have one affected side (or the majority of the issues are located on only one side of the brain). This all sounded very positive...especially when he said his gut feeling was that Austin is a surgical candidate.
That was until he had time to observe Austin and talk to us a bit more about his behaviors. Austin is obviously left-handed (which does not support the indication of the right-sided problem). He also grabs and slaps at his right hand...which clearly signals a left-sided problem (remember that a problem on either side of the brain controls the opposite side of the body).
So....instead of getting and soaking up all the good news he came in to bring...we were all left with confusion. His decision was to schedule another PET scan the following day. This time with a different tracer which would attach itself to the GABA receptors which are usually affected in epilepsy. It is still under research and we would be a part of the study so it was free.
That also revealed right-sided abnormalities...but there were small issues on the left side as well. Without a confirmation from the VMR (it was still extremely chaotic from the hypps), we had nothing else to go on.
We are probably dealing with bilateral problems -more specifically, multifocal cortical dysplasia. He said that there is no next step until his EEG clears up -which it will eventually, but it could be a year or so. Then, we could maybe get a more detailed look at where the seizures are coming from. There were no seizures caught on the EEG because of the hypps...it was too crazy to depict specifics.
Our plan...continue with new med trials (he suggested Banzel and Topomax) or the keto diet. Keep up with routine EEGs until the hypps go away and try another PET then.
He also said that our current doctor is one of the best and to keep with him...but, he also suggested another one in the area (the one I tried for in the beginning). I will get on the waiting list today to see him. As much as we hate our current hospital, he said it is the best one we could go to in Texas and to stay put. He frequently works with them and knows their capabilities.
But, the most important thing he said was, "I really believe that Austin's seizures will come under control."
That's what I desperately needed to hear.
(By the way, the MRI was clean)
4 comments:
I've been WAITING for your post.
First, I am so glad the weather is nice. Makes me even more anxious for my trip to Texas on Saturday (we're staying outside SA for a week).
Second, I am sorry not everything was as you expected. :( But he gave you hope and ideas, something you didn't really have until now. It also must be encouraging that he puts such stock into the doctors there. I can't remember who you currently see. Are you at Texas Children's? Dr W? Have you tried to see Dr Riviello? There are a few people I have talked to that go there. Dr R is who we saw in Boston. Personally I thought he was fabulous.
And as Dr c said, the important thing is he's still moving forward developmentally. That is a GREAT sign!
SO much to digest. Is it okay for me to be heartbroken for you? I'm so sorry... I wanted Chugani to be Austin's miracle. And maybe he will be...in time?
I know that feeling too well. Of looking for answers...but coming up with more confusion & questions instead.
Have you decided which way to go with meds? We're scheduled to start trailing Banzel next week. Almost totally off Vig now... It was good for me to see Chugani recommend it...
Anyway...
Lots of hugs...and wishes for warm cheerful weather for you guys! (and a little for us too...I'm tired of putting on little coats already!)
...danielle
I just came across your blog from Madie's World. Your Austin reminds me so much of my Sophie (she was born in October 2005 and was dx with IS in May 2006 so we are exactly 2 years ahead of you).
The things Dr. Chugani said about Austin are almost the exact same things he said about Sophie...since she is developing so well there has to be a focus and we just have to be patient to find it. It is hard being patient when they are having so many seizures. But Sophie is such a happy child and I am so grateful for that. By the way, Sophie's brain abnormalities are in her left hemisphere but it wasn't until just recently that she started to predominantly use her left hand.
Also, Sophie started Banzel about a month ago. No miracles yet but we are going to give it a few more weeks.
I know it is a lot to digest after talking with Dr. Chugani. It always takes me a couple of weeks to digest what he says before I can come to terms with it.
holli and chad just wanted to say i have been reading all of your blog and with tears in my eyes and a heavy heart i want u to know i cant imagine what u feel.. but please know i will try my best to pray every day for mr austin he is such a lil fighter!!! I pray for God to heal him and lead u in the right direction for his healing., love ya .. nicole'
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