What a difference a doctor makes! We didn't find out news that was any more optimistic, but we at least felt heard, informed, and not rushed.
Our new Epileptologist gave us insight on the reasoning behind decisions that have been made, and also had some completely different answers to some of our questions than the previous Epileptologist did.
First, they aren't 100% sure that it is Infantile Spasms. They appear to be because of the way his body startles when he has one, and the multi-focal spikes on the EEG, but they have not caught an actual spasm on the EEG. (We didn't even know this!) The muli-focal spikes are how his brain normally looks when not having the spasms (a pattern for "normal" brains are just waves, not the spikes). But, spasms typically come in clusters, not single spasms like he has, and usually show hypsarrhythmia on the EEG, which his hasn't (maybe b/c they haven't caught a spasm on the EEG??). She said that if it is Infantile Spasms, it isn't a typical case, and doesn't necessarily mean better or worse news...
If it isn't IS, it may be Myoclonic Seizures/Epilepsy, which from what she said, seems to have a similar prognosis as Infantile Spasms. She said the seizure's outward appearance is very similar to to IS, but the EEG looks different. (I tried to do research on this, but there are so many different types, it is hard to find definitive information for the general term...)
So, as of now, our main goal is to get a definite diagnosis from an EEG that actually catches a spasm in action. To do this, they will admit Deacon into the hospital for an EEG lasting 24 hours. It looks like the first opening they have is in April, but they will call this week to confirm a definite date.
Depending on the diagnosis, we will address treatment options. The reason they did not immediately put him on ACTH, is b/c of the absence of the hypsarrhythmia (hyps). She said it is protocol to use that only when hyps are present due to the small success rate in cases w/ no hyps compared to the terrible side effects from using the medicine. (Could the other dr. not have told us this??) For now, she is comfortable with the Topamax prescription we are on, and agrees with the increase in dosage.
She also ordered more labwork to be completed to look at his metabolism and make sure it is working properly; Quest told us it takes 4-6 weeks to get these results, as well as 6-8 weeks to get the genetic results we already had done.
The Epileptologist gave us more information on treatment options. She said about 33% of people with epilepsy do not respond to medication, and usually after 3 different medications are tried with no seizure elimination, the success rate is about 1% for additional prescription trials. Because Deacon took such a small dosage of the Keppra, she said that won't count as a trial, so the Topamax he is on now will be considered his first.
If we get to the point where we have tried 3 prescriptions that don't work, we will then discuss brain surgery. The majority of this problems are coming from the right part of the occipital lobe, so brain surgery would most likely entail removing that part of the brain. The removal would cause his left vision to be eliminated (right side of brain controls left side of body). Both eyes would still work, but he would have no vision in the left direction. The other 2nd-line treatment option for the seizures is the Ketogenic Diet (very similar to Adkins, but everything must be measured, weighed, and there is NO cheating for it to work). This is basically the last resort, if all else fails. It has a decent success rate, but is hard to follow, especially in small children due to no flexibility in meal options.
We already feel much better to be working with someone who is on the same page as us, and Deacon liked her too! Our next appointment with her depends completely on the results from all of the tests we have coming in.
2 weeks ago