Nervous about 1st Neurologist Visit

[skillefer]

Wow! As I tell my hubby...Nothing tried, nothing gained. It does not hurt to try. My doc has no problem w/ me upping my Magnesium amounts...I'm now at 1000mg/day. And he had no issues w/ me upping my Vit E, B-12, or Niacin....so as he said, "If it helps, great....if not, your body will flush most of it out....just be careful with the Niacin." I'll have to read more about those Z1 lenses.....I am intrigued...and I have an eye doc appt next month...

[RobinN]

What a great find. I never gave much thought to what the visual side of this disorder was all about. Thanks for teaching me something new.

Skillefer - have you noticed any difference in the magnesium level?

[stilldancing_98]

That would be cool for me . I had a grand mal on this computer last week.

[CJR]

I'm surprised that more people in the US don't know about these lenses but then we rely on the doctors to let us know of new treatment options. So if the doctor doesn't hear about it, doesn't understand the difference between the Z1 lens and the Irlen Therapy, or insists on pharmaceutical treatments only...Well...then patients are left "in the dark". No pun intended.

[skillefer]

Well Robinn, I notice I'm a lot more regular. As for any other effects, it makes me a bit more relaxed, I've been sleeping better, not nearly so cranky, did NOT freak out wanting chocolate, no typical PMS symptoms (tender breasts, etc. ), better mood all the way around. We'll have to wait a couple of more weeks to see if the increase helps w/ seizure control.

[nana1]

CJR!

I am also very sensitive to those bad FLUORESCENT lights, ( one time i was told cause of that light i had gone into seizure. I was wondering why i was in er at hospital). When you are in er i have to have them turn off the light cause of what they are and cause of my sensitivity. I also get bad headaches from the bright and painful lights. That when I tell people in er i need light off as it really bothering my eys, or they have to get me something to cover eyes with.
My glasses have the light tint, but the screen on top of my screen on computer is a blueish green tint ( name is UNIVERSAL).
i AM VERY SENSITIVE TO BRIGHT LIGHTS opps. Get the bad head aches, fluorescent light bother me a lot more then i admitt to people. I do have that Photo sensitivity, but hey i can`t do anything now. we tryiing the glasses but does not get rid of seizres or headachs or pain when i see bright lights. I am on meds
KEPPRA 1000MG 2X DAY
LAMICTAL 2000 MG 2X DAY
ZONEGRAN 100MG 2X DAY
PLUS
MECLIZINE 25MG FOR DIZZY
RANITIDINE 150MG FOR STOMACH
TYLENOL PM HEADACHS
BUTALBIAL/APAP/CAFFEINE MIGRAINES


These glasses help cut down onlight and brigthness but don`t see it cutting out seizures. It may be different for your child.

nancy

[brain]

(OFF TOPIC THREAD MOMENTARILY)

Nancy,

You are not alone in the Fluorescent lights.
I'm sensitive to them, I prefer the pink lights
which are more natural. In fact, if many people
hadn't noticed that more and more modern
Physician's Offices have turned back to having
more natural lighting, lamps and less of those
fluorescent lightings? And those who have
upgraded have diffused them. It seems to have
caused eye strains, headaches, et cetera - and
not just impacting people with Epilepsy as well.

Just had to chime in on this one....

[bbbecki78]

we are the only ones that can advocate for our little ones. There are no stupid questions. My feeling is, as I go through these feelings when I see my son's nuerologist, If I don't ask it may not get answered or addressed. We know our children best and if we feel that a med is not working for some reason we as parents need to speak up. My pediatrician at my son's four month appt, did not think he needed B-3 services. I felt he did and made a referral, and was glad I did as he absolutly needed it and still gets physical thearpy and occupational therapy. Don't be nervous or worried about you questions. I think the doctors appreciate it when they have parents that want to know and care about their children.

[stilldancing_98]

I think its awesome what you are doing bb. I grew up with epilepsy so Dr.s are not that big of a deal to me. But for Moms and Dads just starting this. I commend you. It was very difficult in the 70's for my mother to tell the schools and talk to "know it all neurologist" back then. My mom was an advocate and therefore so am I. It is some serious hard work. Teresa

[Katz]

My daughter's first neurology visit is Wed. afternoon. It's got me so nervous. We've been waiting for so long to get in to see a Neurologist that I feel like I've got everything riding on the line here.

The "What if's" are controlling me. For instance: What if the neurologist doesn't want to change her meds. What if the neurologist thinks that she's doing well on the Phenobarbital (which she's not!). What if she (the neurologist) doesn't want to take the time to really answer my questions. What if my 3 page bulleted list of questions seems ridiculous to her. What if she thinks I'm overreacting. What if she doesn't believe that the increase in seizures are hormone related. What if I go CRAZY with all these What ifs....

Too late...I've already gone crazy. I feel like I'm well prepared (after all I've had 6 weeks of time to hang out here and really learn more about E.) but I'm still so nervous that I can hardly sleep (when I do I dream of the neurologist being a real nightmare). My concentration is so off that my husband is starting to suspect that I am having Absence seizures. I told him that he is NOT funny!

I feel like I'm gearing up for a prize fight

Am I being ridiculous? Am I making a mountain out of a molehill? Does the initial visit really determine the rest of our relationship with this doctor? Appreciate all first time neurologist stories/advice anyone has to share.

Well you get a different neurologist if you are convinced he's an idiot it's better you know and go with your instincts because you know your daughter better than any doctor does. Yet you need his help and if he won't listen to you then get a different doctor. You are in control not him. I hope that clears things up for you.

[bbbecki78]

No doubt it is scary. My ten month old has a routine neurology appt next Monday. For me, I just want answers and there aren't any right now, that is what makes it so hard. I have been writing questions down for the past month of things I want to ask...and some of them are things I have asked before, but I want a different answer. We do have to advocate for our kids though. I think we get so anxious and scared because the situation itself sucks....why do we need neurologists? How come we or our kids are sick?

[Katz]

I feel for you and if you need me then I'm there for you. I don't understand you because I don't have children. I don't know the ways of God or this universe. I don't know why anyone gets sick anymore than I understand why any of us are still alive. Yet I do understand this we need to pull together and hang onto each other as much as we can to get through this trial.

There is something I think you need to have of mine. It's a toast for 9-11 but I think you need it right now.

I'd like to propose a toast to our fallen brothers who died for us all. Let the spirit that was inside of them inhabit all of us. They didn't break us as people and Americans. The ties that keep us together are stronger than those forces that try to keep us separate. To fight those who would destroy us; we need to care for each other a little more, forget our differences and be one people once more. Tonight is a night to think about who you are inside, forgive people who have hurt you and think about whether you want to give of yourself and risk it all. Let's celebrate the fact that we are alive and America is wounded but not dead.

Just hang onto hope not the hope that everything will be ok and that this is some mistake but the hope that gets you through the night when you are terrified for your own life and those you love. Love is eternal and lasts forever inspite of everything it's still there and it gives us courage to face some pretty awful things. Crisis in the chinese language consists of two symbols one that means danger and the other that means opportunity. The chinese are very wise and they understand things we do not sometimes. Yet you decide what you want to believe is right or wrong because that is what it means to be free. I'll pray that you sleep through the night and are ready to deal with what you have to.

The doctors pretend to have all the answers but they don't know what the future holds no one does. Yet whether we are sick or well there is one thing we can all do which is to make a difference. Epilepsy in my opinion is not a cause for despair yet it is a chance to grow and make a difference. We each have to fight the fear and the despair in our own hearts and survive everything this world throws at us but we do not have to do it alone not anymore. When we come together then we become greater than we could ever be alone.

We all face our own battles in our lives and we get to choose whether we face them with determination, hope, courage and integrity or we give up and feel sorry for ourselves and lose hope. We determine who we are going to be and epilepsy doesn't determine that unless we let it tell us who we are. Unless we let it define us as people then it has power to destroy us. Yet if we believe in something beyond what we understand then it cannot destroy us it cannot even touch us. So it's your decision and no one can make it for you. Make your choice and make a good one.

[stilldancing_98]

The Advocating never ends. My mother still helps me and I do it every day for my son. I remember seeing my son having myoclonic seizures when he was a baby. I did not want to take him in because I knew what it was. The neurologist told me that was very common in parents with epilepsy. My son already had several problems. But Oh, I just did not want to see this one. he is ten now he is doing pretty good. He can be frail. There is much more. But that is for me to teach his teachers and nurses.

[Katz]

Do not feel guilty for what you did be dedicated to what you eventualy chose. All god can ask from anyone is that we do our jobs and do the best we can inspite of everything that we face.