Not panic. A change
In support of
Oliver Baluch
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Oliver Baluch
Here is a ready-to-post update in Hannah’s voice, using only what you just shared.
**Not panic. A change.**
We had the virtual visit with neurology today. He agreed the EEG was anxiety-inducing, but he is not in panic mode. He does agree something has to change.
The medicine we want is Epidiolex. He cannot take it with the clobazam he is on now, and the clobazam is also part of the low tone. Epidiolex has about a 1 in 5 chance of working. Oliver has now failed three levels of medicine for the infantile spasms, so this is fourth-line. The other fourth-line options have worse side effects, so this is the one we are aiming for.
To get there, we are bridging him onto Keppra. He has been on Keppra before, and it did not help the spasms. This is not because we think Keppra is the answer. It is so we can come off the clobazam and try Epidiolex. One out of five, it is the winning ticket. Four out of five, it does nothing. We are praying he lands on the one.
We started sodium bicarbonate supplements today because his level is dropping. In a week or two, once labs are back, we will try a higher ketogenic ratio. The hope is that holds the spasms enough to bridge him until Epidiolex. At this point I would give my left kidney to make this go away.
The neurologist also said something I needed to hear. Looking at that EEG, it is amazing, miraculous, that Oliver is interacting. That he is smiling, laughing, babbling. The Lord is working in him. He is working miracles.
Plans have moved up. We are now going to CHOP main hospital on October 20 for a second opinion with the keto clinic, and he will have an EEG that day. I am hoping to get into the Ronald McDonald House overnight on Monday the 19th into the 20th.
Thank you for checking on him, praying for him, and carrying us through this. It still means everything. 💙
**Not panic. A change.**
We had the virtual visit with neurology today. He agreed the EEG was anxiety-inducing, but he is not in panic mode. He does agree something has to change.
The medicine we want is Epidiolex. He cannot take it with the clobazam he is on now, and the clobazam is also part of the low tone. Epidiolex has about a 1 in 5 chance of working. Oliver has now failed three levels of medicine for the infantile spasms, so this is fourth-line. The other fourth-line options have worse side effects, so this is the one we are aiming for.
To get there, we are bridging him onto Keppra. He has been on Keppra before, and it did not help the spasms. This is not because we think Keppra is the answer. It is so we can come off the clobazam and try Epidiolex. One out of five, it is the winning ticket. Four out of five, it does nothing. We are praying he lands on the one.
We started sodium bicarbonate supplements today because his level is dropping. In a week or two, once labs are back, we will try a higher ketogenic ratio. The hope is that holds the spasms enough to bridge him until Epidiolex. At this point I would give my left kidney to make this go away.
The neurologist also said something I needed to hear. Looking at that EEG, it is amazing, miraculous, that Oliver is interacting. That he is smiling, laughing, babbling. The Lord is working in him. He is working miracles.
Plans have moved up. We are now going to CHOP main hospital on October 20 for a second opinion with the keto clinic, and he will have an EEG that day. I am hoping to get into the Ronald McDonald House overnight on Monday the 19th into the 20th.
Thank you for checking on him, praying for him, and carrying us through this. It still means everything. 💙
Comments
Pat Lander 24 days ago
Kathy Vickers 23 days ago