Brandon Update

A few of you have asked how Brandon is doing with his medical issues.  This wont be too long today, but I did want to provide an update.  If you look at my post of Nov 6th you will see the medical regiment we started.  We started all medications in October and Brandon began transitioning off Keppra to Briviact.  The neurologist and I discussed the side effects of Keppra, including the inability to absorb vitamin D (not as bad as some other drugs), anxiety, and a few other side effects. The neurologist feared from some of Brandon's symptoms that he may be having mini seizures on Keppra.  I asked to move to Briviact.  Briviact is in the same family of drugs as Keppra, it is a newer version and it claims to have less side effects.  It is still a very powerful anti-seizure medicine and has it own side effects.  But based on my review of the drug, reading lots of sites, reviews from people taking the drug and getting more info from physicians I thought it was the best option for Brandon's type of seizures (partial complex).  Brandon has never transitioned from a seizure med without hospitalization.  So I was worried.  In addition, I knew there would be ups and downs as we were moving to the new drug.

At the same time Brandon's new integrative medicine doctor gave us a series of supplements to raise Brandon threshold for resistance to seizures.  I was hoping that with the supplements we would be able to avoid a hospitalization.  The good news, we were able to successfully transfer from Keppra to Briviact.  Brandon had a few highs and lows with some unexplained fever for a few weeks (spiking to 103.5 with no other symptoms) and a couple of meltdowns which are extremely rare for him.  But we made it through the transition and we are almost 1 month just on Briviact.

In addition, Brandon is regularly going to the Y and doing weight bearing exercises, started back with horseback riding (with lots of volunteers around him), taking mega doses of vitamin D and other supplements and has formally moved to a gluten free diet.  Brandon has started taking a new medication named Forteo to build back bone mass.  This drug is not without risks and must be injected each day. Brandon has been a trooper for completely letting everyone do the injections without any objections.  Forteo is only one of two drugs on the market that builds back bone mass and it is only to be taken for severe cases of osteoporosis. It also should not be taken longer than 18 months to max of 2 years.  I was a little worried Brandon's insurance companies would make us go through hoops to get it approved, but to my surprise the drug was immediately approved by all plans.  Also, I decided I could no longer deal with Brandon's old Part D plan and we moved to a new Part D plan Dec. 1st.  It has been much smoother.

I have been watching Brandon's progress through this whole transition and asking those who work with him what they have seen.  I think the consensus is that Brandon is now highly engaged, more energetic and those nervous habits Brandon has developed from the Keppra seems to have decreased.  I know it will take a while for the Briviact to totally replace Keppra, but so far the changes have been extremely positive.

This month we go back to check in with the neurologist with the goal to now get Brandon on the Texas list for persons eligible to purchase and use cannabis to help control seizures.  We will be working closely with his physicians and the dispensary to get a plan for dosage and monitoring.  This transition will be similar to moving from one seizure medicine to another because we will lower the dose of Briviact while starting doses of the cannabis.  The goal is to lower the Briviact to the lowest safest dose and use the cannabis oil to supplement and keep Brandon seizure free.  Of course I hope Brandon can completely move off Briviact, but I am going to take this one step at a time with Brandon and see what he is willing to tolerate.  Below is a link to a good story on the new cannabis law and dispensaries starting up around the state.

Texas Cannabis Dispensaries 

Brandon really gets the gold medal for putting up with all the supplements, the change in diet, the new medicines and all the changes in medicines.  He really has been very supportive and helpful.  He did tell us that he is scared with all the new medical issues and I think very dedicated to getting better.  Rock star!!!

Speaking of rock star, Brandon has continued to do more Beatles interviews and I have to say they really are pretty amazing.  But there is so much content that we wont be able to use all the content on KOOP Radio.  One of Brandon's dreams on his plan for the future is to have his own Beatles blog.  So we decided to start a Beatles Blog featuring the long version of all the interviews.  Brandon and Elizabeth (his aide) have been working hard to get it ready for viewing in the near future.  So he is pretty excited about all his interviews.  It is also great for him to think of questions to ask, work to find pictures, videos and other content and selection of music for each interview.  It really helps him engage.  AND he is asking everyone if they have met a Beatle and what is their favorite Beatles song.  Ha.  Every time I see him during the week he asks me who will he interview next.  I love that he is so engaged.  Of course that is because the Beatles make him happy.  As long as he is happy through all of this I am happy.  

More later.  

Leah