Need to vent

[dragonlady1978]

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.

 

[marion]

I certainly understand why you're so upset. Many of us have had similar experiences with a doctor. IMO, the problem is the medical system - many doctors (maybe most) do nothing but dispense meds, and the other things that may help they think is myth. It's too bad. I don't have any specific suggestions for you, but I'm sure others will, and good for you for finding us - you're on your way

 

[Rae1889]

Here is something that could ease your mind. It is NORMAL for a person to go blue during a seizure, infact its a good thing. This means the body recognized something was wrong and sent the oxygen to the brain and vital organs to protect it. Thus leaving the extremities with little oxygen. This is okay for up to 5 minutes.

It will take a bit for the blue colour to go away after the seizure stops and he may make choking snoring sounds. Just keep him on his side and stay calm. A seizure is not the best thing to watch but the truth is the best thing you can do while he is seizing is just watch.

 

[Endless]

Dragonlady,

Scary and frustrating - it must be so hard.

I agree that many doctors just dispense meds. That's it. A resource for you may be an occupational therapist that either specializes in TBI (brain injuries), epilepsy, and/or pediatrics. They know a lot about adaptive devices and methods to make people's lives workable and safe, including for you and your son. You can ask your doctor for a referral. She should know some. If she doesn't, I'm guessing that the regional epilepsy center nearest to you could give you the name of a good one.

 

[dragonlady1978]

I hadn't thought about an occupational therapist, I'll add that to my list of things to ask about at our appointment.

I was wondering about the blue-ing, my husband and I were just talking about that...

My reasoning was that I can hold my breath for almost 2 minutes, say, when swimming-and I don't turn blue at all. I could not understand how his lips turn blue sometimes in seizures that don't even last as long as I can hold my breath.

That makes sense, thanks for the info! That's atleast a little less freaking out to do.

I think the thing that bothers me most, and why I am so freaked out now, is that I can't stop thinking about what might have happened if anything had gone differently. If I'd put him in bed instead of on the couch, if I hadn't walked past, I may not have checked on him in time, etc.

I'm so paranoid, I keep his mattress on the floor by my bed at night and the only time he has been away from either mine or my hubby's watch in almost a year was when I had to go to the gyno lol. Before then for the last few years the only time he's been away from us is to stay with my mother, and only because I know she is equally as paranoid as I am.

 

[FLprincess55]

Its hard. i used to be on keppra and the medicine used to make me have more and more seizures than i was supposed to have. usually i have 1-2 a month. but the keppra made me have up to 5 a month.