Just before summer we put Gabs on Accutane, we were not totally comfortable with it, but our doctor felt strongly about putting her on. The treatment is two weeks on two weeks off for 6 months. There is a short novel describing all the side effects of this drug, it is primarily used to treat severe acne. I actually took it when I was a teenager...probably explains a lot of things (lol). The biggest problem with Accutane is the lack of testing done on children. There had been no studies done on anyone under the age of 12 and the concentration prescribed for our 2 year old was 6 times greater than the prescribed dose for a young adult. Gabs took two months of Accutane before we pulled her off as she became very emotional and introverted (depression and crying are side effects). There was also a newly released study that indicated toddlers on Accutane were at risk of stunted growth because of early bone plate closure.
In light of this we felt the unknown risks did not outweigh the suspected potential benefits for her scenario. In addition, there is little evidence to support that 6 months of treatment is too much or too little, it was an arbitrary number that was used when initial testing of the drug was done. All that being said, we do believe that Accutane may have helped Gabs in the two months she was on it and hopefully taking 2 months as opposed to 6 months greatly decreased her potential side effects.
Over to the MRI; we received an e-mail on 6/1/2011 indicating they found two small residual tumors about the size of a pea that were missed during surgery. These were probably what were responsible for her HVA numbers rising. This news was a little discouraging. As we continued to research, we found that sometimes these residual tumors can just sit there and not do anything. Some may actually convert from malignant to benign nerve cells. So this is what we have been praying for.
We thank God daily for his hand in all of our decisions and paths we have taken. We have another VMA HVA test tomorrow and we are hoping for continued good news. Gabs has been doing great all summer, she has been running, playing, talking up a storm, and doing all the things that children her age are suppose to be doing. We have been on a zoo tour this summer, visiting Binder Zoo in Kalamazoo, Detroit Zoo, John Ball Zoo in GR, Potter Park Zoo in Lansing, and the Racine Zoo in Racine, WI. We will try to be a little more consistent with posts in the future. Thanks for all your prayers and support.