Okay, so my last post was a lot more uplifting than this will be. I'm just in the mood to vent. So, take it for what it is and know that I'll put in a 'Pollyanna' moment at the end, just for good measure.
So, yesterday-- wait, back up. Hanna my oldest daughter has seizures (complex partial, which in layman's terms is not quite Grand Mal but she screams, babbles and grabs everything around her). For the past several months she's been on a medication called Neurontin. We've been playing this game with the Doctor-- she has seizures, he ups the medicine, she has seizures, he ups the medicine again.
The higher the medication the more likely it is that she will have those lovely side effects (mostly aggression).
So anyway, the last time we talked to him, he told us that he wanted to see us in his office. So I got the referral and scheduled an appointment-- a month away (that's the earliest he could see us, of course).
In the meantime, he upped her medicine again to an alarmingly high level (9 pills a day). He told us if she still had seizures, to take her into the ER and they would give her medicine through the IV to stop them.
Back to yesterday. In the afternoon she started having seizures. She had 6 within 3 hours, 4 of them were within the same hour. We were debating on whether to take her to the ER, but just then she had another seizure so we decided, yeah-- let's go.
She even had a seizure on the way to the hospital. But I hate going to the ER, especially if I'm not sure of the severity of the problem (hence my walking in to the labor unit dilated to an 8). The entire time I was driving her to the hospital I kept debating, "Turn around or continue forward?"
So, long story short, we ended up at the ER. We were in the waiting room for 3 hours during which we encountered a very grumpy and rude woman. Why is it that almost all of the rude people I run into are in the Dr. waiting room? She had a toddler that I guess was making some noise (I didn't notice), and Hanna made a gesture telling the little girl to be quiet.
The lady got all mad at Hanna. Hanna told her (very politely I might add) that she was just trying to tell the little girl to be quiet. The lady said, "I'll give you a gesture and it won't be telling you to be quiet!"
I couldn't believe she was talking to my daughter that way. So I explained that Hanna had Autism and that she says things sometimes off the top of her head. She's also very sensitive to noise. I was trying to explain so that she understood that Hanna really meant no offense. Her reply, "You're her mother. Why don't you correct her?"
Ouch!
I was shell shocked. I just sat there gaping like a fish.
I tried to calmly explain that I told Hanna not to worry about it and to turn up the volume on the movie she was watching.
Then she said, "Well, I didn't know she had Autism."
I just let it go. Soon after that she left with her daughter to another waiting room.
After that, I had trouble concentrating on my book.
Okay...confrontation's over-- adrenaline is slowly lowering and they finally call us back to the room.
Dr. then tells us that if she was having seizures in the hospital, they would give her something but since she hadn't had one at all while she was there, there was nothing they could do.
Grrr.
He ended up calling her Neurologist (which I could have done from home sans the 3 hour wait and confrontation) to see what he wanted to do.
The answer? You guessed it, increase the dosage of her medicine.
With that solution we were sent on our merry way-- 4 1/2 hours later.
Well, on the way home she had a seizure in the car.
Then in the middle of the night she actually had a Grand Mal.
Arg!!
Needless to say, I've been a little miffed the past couple of days.
Now for the silver lining of the story...
I'm grateful for:
*The fact that we were able to come home from the hospital instead of being admitted
So, yesterday-- wait, back up. Hanna my oldest daughter has seizures (complex partial, which in layman's terms is not quite Grand Mal but she screams, babbles and grabs everything around her). For the past several months she's been on a medication called Neurontin. We've been playing this game with the Doctor-- she has seizures, he ups the medicine, she has seizures, he ups the medicine again.
The higher the medication the more likely it is that she will have those lovely side effects (mostly aggression).
So anyway, the last time we talked to him, he told us that he wanted to see us in his office. So I got the referral and scheduled an appointment-- a month away (that's the earliest he could see us, of course).
In the meantime, he upped her medicine again to an alarmingly high level (9 pills a day). He told us if she still had seizures, to take her into the ER and they would give her medicine through the IV to stop them.
Back to yesterday. In the afternoon she started having seizures. She had 6 within 3 hours, 4 of them were within the same hour. We were debating on whether to take her to the ER, but just then she had another seizure so we decided, yeah-- let's go.
She even had a seizure on the way to the hospital. But I hate going to the ER, especially if I'm not sure of the severity of the problem (hence my walking in to the labor unit dilated to an 8). The entire time I was driving her to the hospital I kept debating, "Turn around or continue forward?"
So, long story short, we ended up at the ER. We were in the waiting room for 3 hours during which we encountered a very grumpy and rude woman. Why is it that almost all of the rude people I run into are in the Dr. waiting room? She had a toddler that I guess was making some noise (I didn't notice), and Hanna made a gesture telling the little girl to be quiet.
The lady got all mad at Hanna. Hanna told her (very politely I might add) that she was just trying to tell the little girl to be quiet. The lady said, "I'll give you a gesture and it won't be telling you to be quiet!"
I couldn't believe she was talking to my daughter that way. So I explained that Hanna had Autism and that she says things sometimes off the top of her head. She's also very sensitive to noise. I was trying to explain so that she understood that Hanna really meant no offense. Her reply, "You're her mother. Why don't you correct her?"
Ouch!
I was shell shocked. I just sat there gaping like a fish.
I tried to calmly explain that I told Hanna not to worry about it and to turn up the volume on the movie she was watching.
Then she said, "Well, I didn't know she had Autism."
I just let it go. Soon after that she left with her daughter to another waiting room.
After that, I had trouble concentrating on my book.
Okay...confrontation's over-- adrenaline is slowly lowering and they finally call us back to the room.
Dr. then tells us that if she was having seizures in the hospital, they would give her something but since she hadn't had one at all while she was there, there was nothing they could do.
Grrr.
He ended up calling her Neurologist (which I could have done from home sans the 3 hour wait and confrontation) to see what he wanted to do.
The answer? You guessed it, increase the dosage of her medicine.
With that solution we were sent on our merry way-- 4 1/2 hours later.
Well, on the way home she had a seizure in the car.
Then in the middle of the night she actually had a Grand Mal.
Arg!!
Needless to say, I've been a little miffed the past couple of days.
Now for the silver lining of the story...
I'm grateful for:
*The fact that we were able to come home from the hospital instead of being admitted
*Hanna did not have any more seizures today (Sunday)
*Jason has the priesthood and gave us all blessings
*That Hanna is a sweet girl, who although unknowingly give offense, tries to help others and make good choices. I really feel she would never offend someone on purpose.
*That I have great friends who will listen to my sob stories and help me feel better
*That we live with today's technology and that my daughter has not been placed in some crazy institution
*For a Heavenly Father who gives me love and comfort when I need it the most.
2 comments:
oh Andrea...I love you so much. I'm so sorry to hear what you guys and Hannah have been going through. You are such an amazing mom...in many many ways. I don't know how you do it at times. I struggle with just 3 kids and no autism.
Oh my goodness! That's horrible, Andrea! There's got to be a better solution then pumping her full of drugs that seemingly have no good effect.
I hope something ends up helping. That is NOT fun. So sorry.
Makes me want to go and study my home remedies manual...there's got to be SOMETHING.
Post a Comment