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Saturday, September 26, 2009

Things are looking better :-)

It has been a couple of stressful days lately - Brextin started to throw up once we switched to a pill form of topamax - I was unaware that it was the generic form (until I picked up his generic sprinkles) - I then asked our neuro if we could switch back to the sprinkles to see if that was the reason why he was throwing up - When I picked them up at the pharmacy they told me they were the generic version and assured me that we should not see any difference from the name brand drug - (this was before I went home to find that the pills that were causing him to vomit were also generic) well that was the night from HEL* we were for certain we were going to end up in the ER - however we stayed strong and he pulled through it -

Be careful generic/name brand drugs are not always the same - every person is different.

I emailed our doctor again and asked if he could get us the name brand drug in sprinkle form and he doesn't believe that the drug is causing our problems - but would be willing to call it in - after a fight with our insurance company we were able to pick up the name brand drug topamax (over $800) a month - unbelievable!!! Well we have gone almost two days without any seizures and without throwing up - I sure hope we are able to stay on this track!

We have been doing our best at getting his sprinkles down his tube - we have found if we mix the sprinkles with his food - it doesn't clog up his feeding tube - unlike just the liquids.

I am awaiting a phone call from Mayo - we are trying to get a 24 to 48 hour EEG scheduled and blood work (I have been told when you are on topamax you should get your blood tested - regularly) well he has been on the drug for almost 2 years and has only got his blood work done in the very beginning - hmmm doesn't seem right.

1 comment:

  1. Hello!

    I found your blog and wondered if you had heard of the Oley Foundation yet.

    We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at www.oley.org.

    In particular you might be interested in the

    • Tube Feeding Tips page
    http://www.oley.org/tubetalks.html

    • Meet Patients Section (try all three links)
    http://www.oley.org/volunteers.html
    http://www.oley.org/call.html
    http://www.oley.org/forum.htm

    • Tube Feeding Complication Chart
    http://www.oley.org/charts/newHEN.pdf

    If you have any questions or would like to be introduced to another family, feel free to contact me.

    Warm regards,
    Roslyn Dahl
    Oley Foundation Staff Member
    dahlr@mail.amc.edu
    (800) 776-OLEY

    ReplyDelete