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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

    In particular you might be interested in the

    • Tube Feeding Tips page

    • Meet Patients Section (try all three links)

    • Tube Feeding Complication Chart

    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
    (800) 776-OLEY