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!!


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