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Thur 7:48pm — I know after all of those crazy hospital stories I owe you guys an update on the results of the king’s EEG.
However, there’s not really much to tell.
He had six decent size seizures during the second night while hooked up to the EEG!
Boo for seizures! Yay for the fact that they caught them on the EEG!
They all came from the right side of his brain which gave the doctors a better idea of which medicines to try next.
So he’s going down on one anti-seizure med and up on a new one over the next month and then we head back to the neurologist’s office.
I’m not even going to mention the names of the meds because I know I’ll get a bunch of horror stories in the comments with whatever med I mention.
So anyway last night he got his first dose of the new med and, of course he has a really rough first day back to school.
Lots of hitting and a rather bizarre pee-pee accident / incident.
But no seizures and no naps!
Did the new med cause the bad behavior? Who the F knows!
Is the new med the reason he had no seizures or naps today? Who the F knows!
Is he having any side effects or feeling weird on the new med? Who the F knows! If only he could tell us how he’s feeling!
What I do know and what I can tell you is that non-verbal autism mixed with severe intractable epilepsy really truly sucks major balls!!
And I’m POSITIVE that if the king could talk he’d say the same thing…
THE END. That’s all I got tonight.
I’m heading to sleep as soon as I get his majesty to sleep.
I still need to catch up on my sleep after 2 days with almost none.
I was literally falling asleep at wheel while in traffic on the way to work this morning.
Goodnight all!
zzzzzzzz
Have you seen the CNN special "Weed" with Dr. Sanjay Gupta? It talks about medicinal marijuana to control seizures. The strain the little girl successfully used, named after her called "Charlottes Web" is now legal to buy in all 50 states. It's CBD oil from hemp and very low in THC. I've just started using it for my son. Positive changes I've seen is being calmer and more compliant. He is almost 12 and has silent seizures every now and then that we catch. Good luck!
I am the mother of a 12 year old with Autism, And very thankfull he can speak, of course he uses a lot o his Own Interpatations (?) But I understand. I am a single parent and I have Suffered from Many Severe Epileptic Siezures, Have tried Many Meds. I have not found the right one for me.I Wish you luck! I do not want to tell you a Horror story BUT PLEASE KEEP IN MIND the LONG TERM AFFECTS of MEDS…
We have a 20 year old son with severe autism/seizures, so I understand, alas. I suspect that hormonal surges started and trigger our son's seizures at times (he had an upsurge at age 18 and onset at near 14). He is irritable just before he has them and has some increased irritability when the dose is raised for a short period. I won't name our med either, but he has been on one seizure and one behavior med for the last few years. The first seizure med was a really bad fit for autism, so he moved to the present one and it has been OK, but we do have break-through occasionally. I have great admiration for you though because his incidence is lower than yours seems to be ( two since April). I hope that all the factors balance for you with meds and time and you son achieves seizure control. I know it will happen for you, but it is a marathon not a short trip, unfortunately.
the interrupted sleep of the past 2 days could certainly lead to aggressive behavior and impulse control issues. hopefully tomorrow will be better after a night in your own beds.
We are going through something similar with new meds for our son. It's really hard when they can't tell or show you how they are feeling. It is frustrating for everyone. I hope you all get some sleep. Good luck on the new meds.
We are going through something similar with new meds for our son. It's really hard when they can't tell or show you how they are feeling. It is frustrating for everyone. I hope you all get some sleep. Good luck on the new meds.
i really wish people would take me seriously and agree to let me be tested for seizures. i just get ignored or told to drink more water. *sigh*
sure does….i feel ya!
I feel ya
Even without any epilepsy my son had a horrible day with behavior problems, attitude, pee accident, and a tantrum that lasted for an hour because I don't F-ing know. He is verbal but was reaching for made up excuses for what he wanted/didn't want. Good luck with your king and here is hoping for a better tomorrow
not alone….totally agree intractable epilepsy and autism does suck big time…have a goodnight…tomorrow is another day
So sorry all this time and little result. I get it and will keep you all in my thoughts.
Good luck and loving thoughts for the future <3
Hope you'll and rock star mommy have brighter days ahead.