Neuro appointment for Jessie

Discussion in 'The Watercooler' started by susiestar, Oct 11, 2011.

  1. susiestar

    susiestar Roll With It

    We had the appointment with the neuro to go over J's eeg and see what is going on. He is so much better than the other ones we saw, in personality, in how he treats my child, and in his knowledge and ability to apply that knowledge. It went pretty well, so far at least.

    I don't think he was prepared for the different types of spells she is having (spells is NOT my word, it is one he is using to get info about what is going on - if he asks for the seizure behavior he gets nothing from the parents or child) as there are 5 different ones. I don't know if they are related but I know that they happen. I had to keep adding info because he wanted to move on after the description of the first type of problem.

    He did listen to all of the info, very carefully. He seemed to be worried that I would want to push him to add a lot of medications, do a lot of tests and fnd a "fix" for this right now. I was worried that if I didn't give him all the info then he would not be able to find the best aspect of the problem to treat first, or that what we didn't tell him would be the piece to give him the "Aha!" moment for whatever is going on.

    He did rx neurontin because it will help with her migraines and he is hoping it will stop any seizure activity. He mentioned that it might be juvenile myoclonic epilepsy - first time a doctor has EVER given any hint that this is anything but conversion. He also says that in about 30% of patients with seizures there is comorbid conversion, and that conversion does NOT mean she isn't also having seizures. Knowing that it doesn't have to be either seizures or conversion, that it could be both was reassuring to both jess and I.

    In addition to the neurontin and continuing her imitrex, the doctor is taking her off of both naproxen and tylenol. I have been very worried about those for quite some time. She was taking a HUGE amount of naproxen daily and a large dose of tylenol. Both were given under the doctor's orders and they were pretty much the only thing that helped the pain, but it just isn't healthy to take so much of either on for months. This is a big relief to me.

    The doctor has also ordered another 5 day eeg to be done at the hospital next to his office. At least this will be a much shorter drive, LOL!

    Thanks for all the support and good thoughts through all of this.
     
  2. InsaneCdn

    InsaneCdn Well-Known Member

    :abouttime:

    Sure helps to have somebody you can work with...
     
  3. Liahona

    Liahona Guest

    So glad you got some one to listen. The best part is he is willing to work on this ans isn't pushing it off because he doesn't have all the answers right now.
     
  4. Hound dog

    Hound dog Nana's are Beautiful

    Ding! Ding! Ding!

    Sounds like you may have finally found Dr. Right. :)
     
  5. Shari

    Shari IsItFridayYet?

    Hoping this is THE doctor. Sounds promising, anyway!
     
  6. buddy

    buddy New Member

    Oh I hope you find some answers. some of my favorite pictures of difficult child are with all those electrodes on him for all those days! 5 days is a long time, we have never been more than 3 so I hope they find something! sounds like a good doctor.
     
  7. susiestar

    susiestar Roll With It

    We haven't done an eeg longer than 24 hrs, so this will be an adventure, lol! She isn't looking forward to it, but does want to figure this out so we can treat it and she can get a life again.

    I am praying that we have Dr. Right.
     
  8. KTMom91

    KTMom91 Well-Known Member

    This sounds so promising!
     
  9. AnnieO

    AnnieO Shooting from the Hip

    This sounds good so far! Will pretzel that it continues!
     
  10. gcvmom

    gcvmom Here we go again!

    I hope this reveals some answers for you finally!
     
  11. DaisyFace

    DaisyFace Love me...Love me not

    Susie--

    I'm so glad that you have finally found a doctor that is willing to LISTEN!

    AND he seems willing to test and explore some different possibilities. Thank goodness!

    I'm going to cross my fingers that you and Jess are finally on the road to getting some answers...
     
  12. SearchingForRainbows

    SearchingForRainbows Active Member

    This is excellent news. Praying this is the doctor who is finally going to be able to help Jess. Sending lots of caring thoughts and hugs your way... SFR
     
  13. keista

    keista New Member

    Sounds very positive. Will keep sending out positive vibes your way!
     
  14. Wiped Out

    Wiped Out Well-Known Member Staff Member

    So glad you have a doctor who is listening!! Jess is in my prayers every day. I'm really hoping this will lead to relief of her pain.
     
  15. Star*

    Star* call 911........call 911

    For all that Jess has been through it took all THIS for one doctor to diagnosis epiepsy? OMG I am so furious with the medical world.....Then on the other hand to finally have my prayers answered and be getting some answers I am glad to know that shes getting SOME relief. Poor baby. Fingers and everything else crossed.
     
  16. Lothlorien

    Lothlorien Active Member Staff Member

    I've been off the boards for a while (long story...too much working). I'm so glad to hear this! Where are you going? I'm so very relieved that you finally found a doctor that is finally willing to listen to you! Wahooooooo!!!!
     
  17. susiestar

    susiestar Roll With It

    What is ironic is that this is the doctor who originally gave her the absence epilepsy diagnosis and used her eeg as an example in the classes he teaches to medication students. We had to change docs because our ins co stopped paying him - NOT because of something he did but because they are notorious for this. They do it to doctors and they do it to patients too. But they were our only option for ins at the time. We are now on medicaid and even that pays better than the ins co did, so we are finally back to him.

    Dr. S, the one we are seeing, said it very well be juvenile myoclonic epilepsy, so I am researching that.
     
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