Thursday, September 13, 2012

About Epilpesy By: Braydon Fowler Art By Claudia Fowler

Hi my name is Braydon.  I have Epilepsy.  You might not because you are different from me.  Epilepsy is not so fun.  You have to be very careful on your medicine, if you forget you will have a seizure.  When you are alone it is not safe.  When you swim there has to be a life guard. 
Child getting medicine
I hate epilepsy but it does not hurt me at all.  I'm going to have a sleep study on Veterans Day.  A seizure is caused by your brain.  Sometimes I am scared to tell someone that I have seizures.  But it wont hurt to tell a few people.  I did two people and it did not hurt.  Some people think it is weird like Lance and he made fun of me.  You might have seizures and if you do you should be proud because you are special.  Some say that I am lucky.  It does not matter if you have epilepsy like me we are all the same.
About my Book
It is about me and my epilepsy and how it can help you and how it cant. 

Thursday, September 6, 2012

Even if you fall on your face, you're still moving forward

    We saw Dr. Cuevas today!! YAY!!  Man have I missed that man!!  We went over a lot of things and hopefully we are getting some answers.

   Things we went over and discussed
     1) ATTITUDE-  Okay I understand he is almost 11 and we are going to have these hormonal rages that make me want to murder my own child, however I am not convinced that this is hormones.  The way I explained the rages and depression the Dr said it was classic medicine.  Here is the list of possible side effects of his current medication  :

  • weakness
  • unsteady walking
  • coordination problems
  • headache
  • pain
  • forgetfulness
  • anxiety
  • agitation or hostility
  • dizziness
  • moodiness
  • nervousness
  • numbness, burning, or tingling in the hands or feet
  • loss of appetite
  • vomiting
  • diarrhea
  • constipation
  • changes in skin color
  • Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

    • depression
    • hallucinating (hearing voices or seeing visions that do not exist)
    • thoughts of killing yourself
    • seizures that are worse or different than the seizures you had before
    • fever, sore throat, and other signs of infection
    • double vision
    • itching
    • rash
    • swelling of the face

    As you can tell, this med is NO JOKE!!  So we discussed the options of changing his meds, however anything else that he takes has the potential to "attack: his kidney and Liver and would require blood test every 6-8 weeks.  So changing meds is not a decision to come to lightly.  We have decided to wait until we do a little more testing.
         2)  His falling out of bed and other night time issues!!  Could be seizures could be Sleep apnea.  The Dr. asked Braydon a series of questions that leads him to believe that Braydon has sleep apnea.  Which could be increasing the horrible mood (our reasoning to NOT jump into changing meds).  Some incidents that have occurred at night are with out a doubt seizure related, the other is classic sleep apnea.  Claudia has mild obstructive sleep apnea(so mild that at this time we are not treating it, however if it affects her later down the road they will take out her tonsils) and although sleep apnea itself is not hereditary the facial and internal characteristics i.e tonsils and adenoids are very hereditary.   So after a through exam they discover some large tonsils and if lack of sleep causes seizures and he has sleep apnea we may have found.  Don't hold your breath that will not "cure" his seizures however it could help YAY!!  Downside we could be looking at having to have his tonsils and adenoids removed and at his age that would be HORRIBLE!!!  However we are willing to do what we have to do!! 
         3)  From a neurological stand point Braydon is doing MUCH better than the first time Dr. Cuevas saw him.  Apparently for up to a week or two neurologically can put you in a cloud.  Causing slower responses and other nero things.  So the Dr said he looked MUCH better than our first visit!!  YAY!!!
         4) The "bummer" news and it is not even about Braydon!!  Dr. Cuevas received an AMAZING job offer at another amazing hospital and will be leaving us Mid October, I am so sad!!   We are going to do the sleep study and follow up hopefully before he leaves so we can see one last time.   
    I feel great after this appointment, I feel like for the first time since the seizure we are moving forward and not backwards. 
    Have a great night everyone!!


    Tuesday, September 4, 2012

    Settle down, it'll all be clear Don't pay no mind to the demons They fill you with fear The trouble it might drag you down If you get lost, you can always be found

    Just know you’re not alone
    Cause I’m going to make this place your home
         Wow!!  These past few months have been very rough for me emotionally.  I feel like I'm finally getting back to myself.  Not that this is ANYONE'S business but I will say this I have decided to start seeing someone for my "demons" that I can't let go of.  You might ask why I'm telling the world and it is because I'm having issue with the fact that I need to talk to someone and I know with every one's support I can do it.
         The past month has been especially miserable.  My marriage to my best friend has taken the worst hit.  You know I hear on a daily basis how perfect Shawn and I are together and as true as that is the past few months have been hell on our marriage!!  Neither one of us sleeps any more, we are constantly at each others throats, and everyday I think of a new creative way to make him miserable!!LOL!! 
          I'm not too worried about it, at the end of the day we both love each other like crazy and we WILL work it out.  So in case any of you man stealer's get any ideas out there he is still off limits!!LOL!!  At the end of the day Love is all you need and I know this is a temporary thing and we do love each other and things will work out.  I'm just trying to be "real" with my current situation. 
        I got a phone call from Vanderbilt today and we had an appointment scheduled for September 14th and apparently the Dr that was going to see him reviewed his file and called his normal neurologist they decided it was not in Braydon's best interest to be seen by anyone other than HIS Neurologist.  So I thought for sure they would tell me October or something equally asinine, but they surprised me with this Thursday at 11:30am.  I'm so excited however last time I got excited to see his Dr.  they called me that morning and cancelled, so I will hold my breath until we actually see the Dr.  This is his first time seeing the Dr since his initial diagnosis!!  WHEW, I'm ready!!
         So the title to this post is a new Song by Phillip Phillips called home and I'm going to break down what it means to me....
    Settle down, it'll all be clear  -Just wait and the answers will come, and if you need help find it!!
    Don't pay no mind to the demons  -Know that everything will be ok, and when I have the thoughts that they wont, ignore them!!  Everyone has their inner Demons.
    They fill you with fear  -Don't let it fill you with fear
    The trouble it might drag you down -Which is what I have allowed my life to be, drug down!!
    If you get lost, you can always be found -I'm in the process of being found!! 
    Just know you’re not alone-My friends and family will never leave me alone, and I just need to remember that
    Cause I’m going to make this place your home-
    It will be better
          So homework for all you out there!!!  If your struggling with your "inner demons" how do you fix them?  Is it a quick snap out of it?  Do you need to go talk to someone?  Can you find a song that you relate to and it helps snap you out?  
         I wish everyone out there the best of luck and I know this is just a temporary bump in my life and I thank all of you for always being there for me!!  As much as I would LOVE to throw myself a complete pitty party the reality of the situation is my problems are small in the grand scheme of things.  As much as Epilepsy has messed up our lives at the end of the day it has not destroyed it.  Luckily our peices can be put back together when so many families are just destroyed.  Im lucky, I have a husband who loves me, two amazing children, and the best support system ANYONE could ask for.  Im thankful that I have the means to talk to someone about my problems and husband who wont give up on us.  I will keep you guys updated on Braydon's progress and Mine!!!  Wish us luck!!