Well, we got to meet up with Alexis's team of doctors this week. I realized as we were waiting in the room for the medical team to come in that I was extremely anxious. It was at this moment that I realized that I also have some built up anger and well grief that I need to deal with. I swear having a child with a complex issue like this is like riding a 24/7 grief train. Going though all the emotions of denial, anger, bargaining, and acceptance.
We saw neurology first. Dr. Taylor is our neurologist. After discussing her low blood volume of her Trileptal, side effects and seizure activity we decided that it was time to switch her medication. He wanted to get her seizures completely under control with minimized side effects. So we were given a transition sheet to wean her off of it and move her onto Keppra.
Second we saw Neurosurgery. We discussed everything in great detail and well we have a complicated treatment plan. Basically we are all set to get a repeat MRI/ MRIA/MRIV series with and without contrast dye in July 2016. Essentially if there are any changes to her AVM then we will begin treatment late this fall, spending most of the early time in fall getting her treatment plan in place to begin radio surgery. If there really doesn't show any changes then we will then discuss a time to repeat her scans at a later time ( end of 2016/ beginning 2017). Then we will again have a discussion on when to start treatment, keeping in mind it will need to start sometime before starting kindergarten,
So, you maybe thinking well if they keep seeing no changes why cant they delay treatment until they start seeing problems. The answer is well... COMPLICATED. Radiosurgery, while a proven good treatment option takes time to show full effects and during treatment may need multiple rounds for optimal success. It takes a good year or two to see full effects. During the "watch and wait time" there is actually an increase in bleeding risk of the AVM site (something that we are trying to prevent by intervention). Keeping in mind this and the fact that every year her increase of this naturally occurring goes up it makes a good point to intervene as soon as possible but not too soon that it causes more damage than goods. Think of it as a risk vs. risk scenario.
AVM Lifetime risk formula for causing life threatening problems. Other factors that increase this risk is high blood pressure, location, life style, bleeding disorders, heredity.
risk (%) = 105 - patient's age
So you take Alexis age 2 years old - 105 = 103%---- YIKES
Another way to look at it is take 3 percent a year of age. Right now her risk is somewhere between 6 percent but you factor in her bleeding disorder and well... we are sitting at around 10-15 %.
Radiosurgery... We learned that they like to use pins. She will be sedated for each procedure. Treatment is typically once a week for several weeks (according to our AVM friends its about 6-8 weeks) She will require I.V. access and will require follow up a few days later after treatment.
For now... Im focusing on our 5k and spending time with the girls :)
We saw neurology first. Dr. Taylor is our neurologist. After discussing her low blood volume of her Trileptal, side effects and seizure activity we decided that it was time to switch her medication. He wanted to get her seizures completely under control with minimized side effects. So we were given a transition sheet to wean her off of it and move her onto Keppra.
Second we saw Neurosurgery. We discussed everything in great detail and well we have a complicated treatment plan. Basically we are all set to get a repeat MRI/ MRIA/MRIV series with and without contrast dye in July 2016. Essentially if there are any changes to her AVM then we will begin treatment late this fall, spending most of the early time in fall getting her treatment plan in place to begin radio surgery. If there really doesn't show any changes then we will then discuss a time to repeat her scans at a later time ( end of 2016/ beginning 2017). Then we will again have a discussion on when to start treatment, keeping in mind it will need to start sometime before starting kindergarten,
So, you maybe thinking well if they keep seeing no changes why cant they delay treatment until they start seeing problems. The answer is well... COMPLICATED. Radiosurgery, while a proven good treatment option takes time to show full effects and during treatment may need multiple rounds for optimal success. It takes a good year or two to see full effects. During the "watch and wait time" there is actually an increase in bleeding risk of the AVM site (something that we are trying to prevent by intervention). Keeping in mind this and the fact that every year her increase of this naturally occurring goes up it makes a good point to intervene as soon as possible but not too soon that it causes more damage than goods. Think of it as a risk vs. risk scenario.
AVM Lifetime risk formula for causing life threatening problems. Other factors that increase this risk is high blood pressure, location, life style, bleeding disorders, heredity.
risk (%) = 105 - patient's age
So you take Alexis age 2 years old - 105 = 103%---- YIKES
Another way to look at it is take 3 percent a year of age. Right now her risk is somewhere between 6 percent but you factor in her bleeding disorder and well... we are sitting at around 10-15 %.
Radiosurgery... We learned that they like to use pins. She will be sedated for each procedure. Treatment is typically once a week for several weeks (according to our AVM friends its about 6-8 weeks) She will require I.V. access and will require follow up a few days later after treatment.
For now... Im focusing on our 5k and spending time with the girls :)