Tax day and a Brandon Medical Update

Today is the day I hate most in the year.  Tax day.  I always put it off to the last minute because I am so darn busy.  Once again I am here figuring my tax extension (waited too long).  At the same time I am sitting here getting Brandon's medical records together preparing to send to Brandon's surgeon and I am requesting some additional medical records to include.  For anyone with chronic medical conditions I highly recommend getting copies of medical records from every medical visit, test, bloodwork and xrays.  I have provided medical records for Brandon with various doctors going back to his birth.  They ask for them over and over.  I am about to scan all of these and use a new program so they are available though an app.  I will let you know how that goes.

But back to Brandon's update.  Brandon went to his Integrative Medicine physician today to go over progress.  Brandon has been receiving nightly injections for Forteo for over 6 months.  So far he has tolerated the injections very well.  Our hope is that with the Forteo, the other supplements, weight bearing exercises  and changes to his diet that we have made serious progress in his building back bone density.  Brandon's physician only wants Brandon to be on Forteo for 1 year.  Brandon will increase two supplements.  NAC and Avmacol to boost Brandon's seizure threshold.  Brandon will have blood tests to check vitamin D level but will continue on the high dose of vitamin D3 (50,000) twice a month.

Based on previous blood test results we are increasing intake of potassium in the diet to help with absorption of vitamin D and calcium. We are adding coconut water and banana's to his smoothies.  Another cause of low vitamin D and absorption issues can be low testosterone levels.  We are checking levels to see if Brandon needs additional treatment.  This particular doctor also is a researcher for genomes and is particularly interested in Brandon's genome results for the mitochondrial diseases.  Brandon will be taking another specified genetic test to help get more information.  I know - WOW.  What doctor does all of this.  I am always so blown away when  we go in because we have never had a doctor so interested in getting the best treatment for Brandon for his overall health.

So are we making progress?  Yes.  Everyone has commented on how interactive and more social Brandon has become.  We will find out if Brandon's vitamin D level has increased through this round of blood tests.  The game plan is to come back for follow-up from the blood tests in June and go forward with surgery for scoliosis hoping to be scheduled in Sept.  If Brandon has surgery in Sept we will continue on forteo for 2 months to assist in healing quicker.  We will do a new bone density test before the surgery.

I am a little in shock because I was hoping to delay the surgery for another year.  But after walking through the plan I agree it will have the best outcome for Brandon.  We have connected with Brandon's scoliosis surgeon to begin the process of setting a date for surgery and getting all the tests he will need before that date.

One more small update.  We also met this week with Brandon's neurologist to discuss getting in the CBD trial here in Texas.  Our goal is to lower the seizure medicine, help with vitamin D absorption and use CBD oil to help with seizure control and side effects.  But he is concerned about the level of THC in the current labs here in Texas.  He is waiting for a specific lab to be ready in June.  We decided in the meantime to begin using Charlotte's Web CBD oil that you can order online.  It has less than 1% THC and has been proven effective.  So we will begin on this after we receive our shipment. I know several of you are keeping up with this and I will let you know how it goes and dosage we will be using.

For today, Brandon slept through the appointment completely uninterested in whatever we discussed.  As we were walking out of the building I looked down at his sandals and realized I had two right foot sandals on left and right feet.  Brandon has to deliver mail to 9 floors at UT today and that was not going to work.  So I took him to the nearest shoe store and $147 later Brandon has some pretty darn good looking new running shoes.  Ha.  AND I forgot to give Brandon his medications this morning.  So Brandon had to come home for his medications before going to UT.  Not one of my better mom days.

Anyone interested in Brandon activities he has a new website talking about how the Beatles music has influenced his life.  You have to click on the link in the middle of the blog post to hear his own interview.  https://brandonbeatsblog.com/  He will soon be posting interviews he has done with various people on how the Beatles music has influenced their lives.  AND he would want you to know that his band is playing at Founders Day Festival April 28th from noon to 2 in Dripping Springs.  Hope to see you there.
All for now
Leah