dragonlady1978
New
- Messages
- 47
- Reaction score
- 0
- Points
- 0
Since lurking at this forum for a few weeks, I have learned about many options that others are using that would make my son's condition more manageable and my life so much easier....and it makes me REALLY P.O.'D that our pediatric neurologist isn't giving us these options herself.
We have been with this doctor for about 2 years. Let's just say that if I had another decent choice I'd take it, but here we are so I try to make it work.
Safety pillows, monitors for while he is sleeping? WHY WHY WHY is this woman not giving me these things?!?! Just in the last 2 visits over the last few months we have specifically discussed with her how little sleep I get, that I lay awake watching him terrified that something will happen? Most of his seizures are at night, he sometimes vomits, he sometimes stops breathing....if something happened to him and I found out these things should have been available to me after the fact I would probably need a straightjacket and/or bail money.
In September Hunter had a really bad seizure, worse than usual. He had fallen asleep in my hubby's lap and i could tell he was feeling wonky that day, so I laid him down on the couch where I could keep an eye on him. I was doing some cleaning, in and out of the living room and I just happened to be near when he started convulsing so badly he fell off the couch. When I picked him up he was already blue. Called ambulance, he didn't breathe for about 5 minutes-I thought I was going to lose him. It took several hours after for him to recover, to be able to speak clearly and remember simple things like our names.
I cry now even thinking about this, I have been on edge about his epilepsy for 4 years now but this particular incident has left me an emotional mess. My hubby lost his first child (from another marriage) at 3 months old when he had a seizure and stopped breathing, his first seizure ever-no warning. He has a daughter from the same marriage who is now 20 years old, who is seizure free for the last decade but has psychological and intellectual issues either from her seizures or the meds she took as a child.
Right now Hunter is having good seizure control, but Keppra is giving him terrible side effects. I am scared to try anything different because other meds have made his seizures worse or left him so uncoordinated he was bruised and banged up from clumsiness. I talked to the doc about B-6 and she dismissed it wholly, so I am stuck guinea pigging it for now with advice only from the pharmacist. I've learned here and read other places about dietary changes that allow some people to go meds-free....yet another thing the doctor has never mentioned.
Our next appointment is next month, and I will certainly be bringing all of my questions to the table and armed with some new things to discuss, and I am not going to stand for less than full support of what I want to happen. My biggest frustration here is that I am having to tell the doctor about all these things, not the other way around. What if I'd NEVER learned about any of it? Shouldn't the doctor be the one I can count on to inform me, not just this doctor, but the 2 before? I know that I should be thankful to be armed with different knowledge now, but I can't help but be angry that the last few years could have been very different with a machine to monitor his nights rather than my going crazy over it and feeling like a zombie all the time.
I feel like we have been robbed.
We have been with this doctor for about 2 years. Let's just say that if I had another decent choice I'd take it, but here we are so I try to make it work.
Safety pillows, monitors for while he is sleeping? WHY WHY WHY is this woman not giving me these things?!?! Just in the last 2 visits over the last few months we have specifically discussed with her how little sleep I get, that I lay awake watching him terrified that something will happen? Most of his seizures are at night, he sometimes vomits, he sometimes stops breathing....if something happened to him and I found out these things should have been available to me after the fact I would probably need a straightjacket and/or bail money.
In September Hunter had a really bad seizure, worse than usual. He had fallen asleep in my hubby's lap and i could tell he was feeling wonky that day, so I laid him down on the couch where I could keep an eye on him. I was doing some cleaning, in and out of the living room and I just happened to be near when he started convulsing so badly he fell off the couch. When I picked him up he was already blue. Called ambulance, he didn't breathe for about 5 minutes-I thought I was going to lose him. It took several hours after for him to recover, to be able to speak clearly and remember simple things like our names.
I cry now even thinking about this, I have been on edge about his epilepsy for 4 years now but this particular incident has left me an emotional mess. My hubby lost his first child (from another marriage) at 3 months old when he had a seizure and stopped breathing, his first seizure ever-no warning. He has a daughter from the same marriage who is now 20 years old, who is seizure free for the last decade but has psychological and intellectual issues either from her seizures or the meds she took as a child.
Right now Hunter is having good seizure control, but Keppra is giving him terrible side effects. I am scared to try anything different because other meds have made his seizures worse or left him so uncoordinated he was bruised and banged up from clumsiness. I talked to the doc about B-6 and she dismissed it wholly, so I am stuck guinea pigging it for now with advice only from the pharmacist. I've learned here and read other places about dietary changes that allow some people to go meds-free....yet another thing the doctor has never mentioned.
Our next appointment is next month, and I will certainly be bringing all of my questions to the table and armed with some new things to discuss, and I am not going to stand for less than full support of what I want to happen. My biggest frustration here is that I am having to tell the doctor about all these things, not the other way around. What if I'd NEVER learned about any of it? Shouldn't the doctor be the one I can count on to inform me, not just this doctor, but the 2 before? I know that I should be thankful to be armed with different knowledge now, but I can't help but be angry that the last few years could have been very different with a machine to monitor his nights rather than my going crazy over it and feeling like a zombie all the time.
I feel like we have been robbed.