Ugh. I'm having real difficulty typing this. The tears keep coming. What a difficult month.
My birthday was spent at PCMC... just last year I was getting ready to stay there with Damon.
We had neurology appts for both Aidan and Damon.
Damon's went as I knew it would. Want a new eeg to "clarify" though if pressed they admit even those are not really that accurate. Willing to try another anti-seizure med, now that one has already been tried and was successful. (He didn't want to put Damon back on that med permanently because it's an old one and he likes the new ones better.) But it's one that Aidan reacted very negatively to, so I'm not exactly running to the pharmacy.
Aidan had the bigger issues.
Though the neurologist told me to do what I wanted him to tell me to do with the meds, I left the office with a very heavy heart. He also wants me to get a second opinion for Aidan. He says that either Aidan has the 2% worst epilepsy out there, or there is something else going on. I was stunned. I immediately thought to myself, great, another neurologist bites the dust... There are only so many neurologists, none worth messing with in IF, none to speak of in Poky. SLC is the only place left, and they have less than 10. A few I already know I wouldn't trust with my purse, let alone my son. This guy is a good neurologist. It felt as though we were being passed off. Of course they want a 3day eeg. I figured they'd want an eeg of some sort.
So we go back in a month or sooner for that.
Half my worries about worsening symptoms ended up ignored... I guess it was just too much to be hit with.
Think of how Aidan feels.
In the meantime, we increase the Depakote again, increase the Banzel back up to where it was, and decrease the Zonegran. Three med changes at once... how am I supposed to tell what's doing what?
All this right after the MAJOR heatstroke episode.
The pediatrician wanted to test Aidan without electrolytes to see if he "really" is low on them without supplementing.
I don't get why just looking up the drug interaction on the internet wasn't good enough.
I knew it was going to be bad, but wow it was really bad.
My sweet precious Little Man disappeared into a seizure filled oblivion that included not being able to speak and his eyes rolling up into his head over and over.
The last time I saw this was when he was sleep deprived for his first eeg, before any meds.
He is still paying for it, almost 3days later, but at least he didn't go into status.
So tonight I am very grateful we are home and that my boys are with me one more day.
My birthday was spent at PCMC... just last year I was getting ready to stay there with Damon.
We had neurology appts for both Aidan and Damon.
Damon's went as I knew it would. Want a new eeg to "clarify" though if pressed they admit even those are not really that accurate. Willing to try another anti-seizure med, now that one has already been tried and was successful. (He didn't want to put Damon back on that med permanently because it's an old one and he likes the new ones better.) But it's one that Aidan reacted very negatively to, so I'm not exactly running to the pharmacy.
Aidan had the bigger issues.
Though the neurologist told me to do what I wanted him to tell me to do with the meds, I left the office with a very heavy heart. He also wants me to get a second opinion for Aidan. He says that either Aidan has the 2% worst epilepsy out there, or there is something else going on. I was stunned. I immediately thought to myself, great, another neurologist bites the dust... There are only so many neurologists, none worth messing with in IF, none to speak of in Poky. SLC is the only place left, and they have less than 10. A few I already know I wouldn't trust with my purse, let alone my son. This guy is a good neurologist. It felt as though we were being passed off. Of course they want a 3day eeg. I figured they'd want an eeg of some sort.
So we go back in a month or sooner for that.
Half my worries about worsening symptoms ended up ignored... I guess it was just too much to be hit with.
Think of how Aidan feels.
In the meantime, we increase the Depakote again, increase the Banzel back up to where it was, and decrease the Zonegran. Three med changes at once... how am I supposed to tell what's doing what?
All this right after the MAJOR heatstroke episode.
The pediatrician wanted to test Aidan without electrolytes to see if he "really" is low on them without supplementing.
I don't get why just looking up the drug interaction on the internet wasn't good enough.
I knew it was going to be bad, but wow it was really bad.
My sweet precious Little Man disappeared into a seizure filled oblivion that included not being able to speak and his eyes rolling up into his head over and over.
The last time I saw this was when he was sleep deprived for his first eeg, before any meds.
He is still paying for it, almost 3days later, but at least he didn't go into status.
So tonight I am very grateful we are home and that my boys are with me one more day.
1 comment:
So sorry you had such a stressful day dealing with so many overwhelming issues. I thought of you yesterday while we were headed to Mom & Dad's. Wish you could have had a calmer day for your birthday. The boys are blessed to have you as their advocate 24/7. Glad you made it home safely. I'll write more later in an email. This is my longest comment, so you don't have to publish it. (= Love you!
Elle
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