The plan for the Spine and Paul McCartney

I wanted to start off the blog today by letting you know why I do this blog.  The blog is both therapeutic for me and helps me keep up with Brandon's progress.  But I started the blog with the intention that when someone asks me how is Brandon doing, I can say fine and then refer back to the blog for how he is really doing.  Repeating the same story over and over sometimes is difficult for me and it is just easier to say he is fine.  And let me say - Brandon is really doing great.  He has a great life despite the challenges he must deal with everyday.  He doesn't even think about those challenges and instead focuses on those things he loves.  It is about music and in particular the Beatles.  He is very happy.  I want him to always be happy. 

I also do the blog because I hope it helps at least 1 more family searching for that little bit of information they have been seeking.  Maybe it is the name of a doctor, a drug Brandon is using, diet, supplements, employment, housing and accessing services.  I feel lucky that we have been able to find great resources for Brandon because of my past work, work on advisory committees or where I currently work.  But not all parents have the same access and don't really know where to start to find resources.  I hope some of this is for parents searching for answers.  

Probably more importantly I do the blog for all of you who have looked at a child with special needs and don't know what to say or don't understand what it is like to be a parent of a child with special needs.  Many of my friends are lobbyists/lawmakers/policy developers making policy for people like Brandon.  But they don't know any Brandon's.  This is my attempt at helping educate, even if only one person takes an interest and then uses the examples for change.  I have found over the years Brandon has been referenced in many conversations and I am fine with that when the end result helps many Brandon's in the future.  I will continue to be the voice for change for Brandon and so will Brandon.  

Many of you have commented that you are so glad Brandon is doing better since my last post on facebook giving an update.  I have mixed response to this.  Brandon still has a serious medical condition he is facing.  He still must have surgery to correct this condition and it will be major surgery to rebuild his spine.  But what we have learned for the last few months is there is a treatment that can slowly improve Brandon's osteoporosis.  Brandon's bones are too fragile to handle a major surgery today.  Continuing with treatment of the osteoporosis must be a priority for Brandon currently.  Monitoring Brandon's spine will be a priority.  At some point probably within the next 3 years Brandon will have the surgery.  Because Brandon's surgery is so complicated we really need to have a surgeon who has done other Brandon's.  And it is a plus if the surgeon loves the Beatles.  Our goal is that after a successful surgery Brandon does not have any more pain than he currently has today.  So here is the latest.

Update on Brandon's Osteoporosis - Before we went to meet with surgeons this week Brandon had a repeat bone density performed.  We received the results right before our meetings with the surgeons.  The results are similar to what we were told to expect by the MD Anderson doctor.  Brandon's overall improvement after 1 year on forteo, changes in supplements, exercises and vibration improved by 5.4%.  However the hip and femoral neck declined. Brandon is at risk of a major osteoporotic fracture at 13%.  Brandon's scores in the spine which is the area we need more increase of bone, range from -2.5 (T and Z scores) to -3.4.  Normal is 1 and low bone mass (osteopenia is between -1 and -2.5).  Our goal is to get to these scores to the osteopenia range.  This was important news before our visits.  

The Austin surgeon's surgery plan - Brandon met with the Austin surgeon who was scheduled to perform surgery on him in October.  This surgeon reviewed all the records and is suggesting that Brandon have a rod inserted from T9 through L4 (see below).  The surgeon was ready to do surgery in Oct but agreed that more bone improvement is always ideal.  He said that Brandon could wait while completing the osteoporosis treatment.  He said he wasn't sure, but he may need to insert the rod from T9 all the way to the pelvis because Brandon's spine is not aligned.  He would open Brandon up in the OR and decide if he would need to go all the way to the spine based on the alignment.  He said that balance is key to the success of the surgery.  He also said that Brandon's curve has changed from 52% to 56%. He went on talking about how bad Brandon's curve is which is in between T 9 and L4 and specifically serious decline between L1 and L4.  He really didn't have much more detail on what he is recommending for surgery.  We actually left this appointment feeling fairly good with the recommendation except the part where he would not decide whether to go to the pelvis until in the OR.  

The second opinion - We left Austin and headed to Dallas for our first second opinion.  It was actually nice that they were close to each other in time.  Dr Robert Viere in Dallas was our second opinion physician.  We have another one scheduled in Houston with Dr Hanson in a few weeks.  When everyone said Brandon needed surgery on the spine I outreached to Brandon's foot surgeon at Scottish Rite.  He followed Brandon's scoliosis for several years while treating the foot.  I sent over a few reports to him and he looked up Brandon's history from Scottish Rite.  He was concerned and strongly insisted that we see Dr Viere.  He said they refer their patients who age out of Scottish Rite to Dr Viere and all the physicians practicing at Scottish Rite use him personally.  I brought all of Brandon's records and films with me.  Dr Viere reviewed all the records and reports.  When he came in he immediately started checking all of Brandon's limbs, moving them around and pressing on them.  That actually felt great because no one seems to be interested in Brandon's overall musculoskeletal health and I have always thought that is important even in regards to his spine.  We did not move forward with his foot surgery until we were able to determine the impact on Brandon's body from the deformity of the foot and the impact surgery will have to improve his gait.  I thought this was lacking for prep of this spine surgery.  The first thing he said was you cant do surgery on a person with cerebral palsy or a neurological condition the same as other adults.  Spasticity plays a large role.  A person with tight spasticity can pull bones through the implants.  Based on his exam Brandon could have the surgery as his muscle tone in the truck is low and therefore is a candidate for surgery.  Brandon's x-ray in his office is showing the curve is around 52% overall in the spine.  He is also concerned with the curve between L1 and L4 and the severity of the decline.  

But his plan is different.  He says that Brandon's spine is leaning to the left and this is why Brandon walks leaning to one side.  The only way to repair this is to align Brandon's spine to the pelvis.  Brandon's spine will need supports when doing the repair.  They will insert these supports through the front.  This will cushion the spine as they align.  Besides tilting to one side, Brandon is tilting forward which will also need to be corrected.  Once the rod is inserted all the way to the pelvis Brandon will not be able to bend over or move from side to side.  Bending over is really not an issue because Brandon rarely does this now.  But he does not want Brandon to have this surgery until Brandon is in the osteopenia range as I described above.  He is recommending that we continue on forteo and then the new drug until we have better bone health.  He wants to check Brandon next year to see progress and anticipates in a couple of years he will be ready.  He also believes Brandon must be checked for any genetic condition because this will factor into the surgery.  He definitely wants more information on osteogenesis imperfecta or any other genetic information.  We will come back to his office for more tests and review in 1 year.  As we were walking out we met Dr Viere heading to the hospital.  We commented about Brandon's love of the Beatles and Dr Viere said he has every original Beatles album released and that he is a major Beatles fan.  That really made Brandon's day.  

Recovery - For both surgeons Brandon will be in the hospital for 5-7 days.  Dr Viere's plan is for Brandon to go to inpatient rehab to learn to walk again without leaning and improving his balance.  He will need to be in a hard plastic brace after surgery and will be in significant pain for around 2 months which they will manage. At 3 months he will begin to feel better.  When recovery is complete Brandon will be feeling better than he is currently.  

The heart - The Austin surgeon wanted Brandon to go through a complete adult assessment to make sure he is healthy enough to go through surgery.  At our hospital visit to check his ability to undergo surgery Brandon flunked the EKG.  This is not unusual and normally associated with a lead from the test not correctly placed, but he looked through previous EKGs ( he has had one every quarter for the last 15 years) and requested Brandon go to an adult cardiologist to get checked and to review his genome results.  We did have a check previously with the pediatric cardiologists but it has been at least 8 years.  We will go meet with the adult cardiologist to make sure we have checked all the possible conditions.  As Brandon said - mom we will check this one off the list.  Hmm wonder where he heard that.  

Relief - I can only tell you that I have a major sigh of relief, even if for a short time.  Relief is that we are not doing surgery in 6 weeks.  Relief is that we have a good plan and a good team (with the exception of genetics -still working on this with Baylor).  Relief that Brandon is not in significant pain and will not be in significant pain for a few more years unless his condition worsens. Relief is that we have time to work through any other major issues that may come as a result of the genetic workup or the cardio visit.  AND relief is that Brandon gets to see Paul McCartney in October without worrying about a surgery around the corner.  

And to put it in perspective as Brandon says - All you need is love (and Paul McCartney).  

More on the genetics as we move through this process and the heart with includes some genetics.  But all is good for now.  

Leah

It's all about the Bones

If you read my last blog I explained our current dilemma on whether Brandon should have scoliosis surgery or not. I feel like the options are not good and have decided to go to meet with other physicians around the state to get more information. This blog is all about the bone research.  

Since I last updated you, Brandon visited with Sharon Hausman- Cohen MD our integrative medicine physician.  I am telling you her name now because she has just opened her practice to help other children and adults with intellectual disabilities among others with disabilities such as Alzheimer's.  I will say that Brandon has had significant cognitive improvement since we have started seeing her.   For Brandon she has guided us on building bone and is looking at some genetic causes of Brandon's disabilities.  She previously had a great deal of experience with patients with osteoporosis.  So she was a perfect choice for Brandon.  She also is a strong supporter of using supplements, diet and some drugs on the market to help with osteoporosis. At our last visit she rechecked some additional blood tests which were normal and we discussed the current plan to have surgery in October.  I explained to her my concern that it appears Brandon is at high risk of a break during surgery or after surgery on his spine and hips if we have surgery in October.  I asked her if she recommends moving forward with the surgery knowing Brandon's risk.  I also told her our two options presented - surgery with risks or no surgery with future deterioration of the spine.   She suggested there is a third option to continue to build bone, follow the scoliosis and hope our treatment will allow Brandon to maintain his current curve and no further decline of the spine.  We went over everything we have done to rebuild bone.  The supplements (see earlier blog).  She added vitamin K.  The diet.  We will continue.  The exercise - Brandon goes to the Y 3 times a week and does weight bearing exercises and his jobs require a lot of walking.  She suggested we buy a whole body vibration machine.  Brandon now had a vibration chair (thanks to my friend Steve and Cathy Beard) and we have ordered a standing vibration machine.  Our goal is to obtain up to 40 Hz for 30 minutes a day.   Whole Body Vibration

Lastly, we discussed continuing for another year with approval from the manufacturer on forteo.  She recommended to wait on having the surgery.  She ran a series of genetic tests focused on Mitochondrial conditions.  I am going to list the services she is currently offering in her practice below.  We are scheduled to update the bone density tests in Sept. to see what progress has been made.

I still felt like I needed more information on the causes of Brandon's osteoporosis.  To move forward with surgery I would want to know if there are any underlying causes besides the seizure medications. Any underlying conditions may change whether to proceed with surgery or better inform us of anticipated outcomes.  Thanks to Dr Peacock at the Baylor Transition Clinic asking me the question of why and finding a great resource to discuss Brandon's "bones".  We were able to secure a visit with Dr Gagel at MD Anderson.  Thanks to Marian Cabanillas for helping us get an appointment.  This week we visited with Dr Gagel in Houston.

My question to Dr Gagel is why does Brandon have osteoporosis at age 25.  I also wanted to confirm the severity and the need for surgery.  I spent a few weeks getting all of Brandon's medical records together.  A little frustration - we have been scanning the records and putting them on an app called CareSync.  Really great concept and it saved me from having to drag around 10 pounds of medical records.  But a few weeks ago they went out of business.  We stopped scanning the records and I brought all hard copies and the actual scans, xrays, etc on disc.

Dr Gagel reviewed the relevant records, we discussed Brandon's foot and information from Scottish Rite (we had all the records and scans) and he reviewed the actual bone density scan.   Dr Gagel confirmed that Brandon has severe osteoporosis and at this point is at high risk of a fracture during surgery.  He reviewed the scan and the crucial areas where Brandon has severe bone loss.  He does not recommend we move forward with surgery at this time.  Instead, his recommendation is that we continue with forteo for another year.  Then we move to another drug Romosozumab.  This is a new drug just approved by the FDA to increase bone loss and has double the results of the other drugs.  All of these drugs come with potential major side effects but the likelihood of getting the side effect is very small. Here is some information on the drug  Romosozumab.  Dr Gagel wanted us to know that all of these drugs will improve bone health but once Brandon has achieved the maximum bone improvement he is able to achieve, he will then need to start taking a drug to hold the improvement level.  All of these drugs do not maintain the level of bone health once the drug is stopped.  New news to us.  I also asked Dr Gagel what level of improvement we can expect.  He said with one year of forteo we can expect a 5% overall improvement and with 2 years a 10%.  We will expect more from romosozumab.  Even with these drugs Brandon's bone health will unlikely recover from the diagnosis of osteoporosis.  What it will do is improve the risk of fracture by over 50%.  All much better news.  I also asked Dr Gagel if he believed Brandon needs surgery for his scoliosis. He reviewed the actual x-rays and scans, pointed out where Brandon's back has severe scoliosis and bone structure issues and he said that yes, Brandon has severe scoliosis and will need surgery to repair.  However, we will have the weigh the risks of his bone health and any underlying conditions when making these decisions.  Can Brandon wait 3 years.  He didn't know but said we will just have to continue to monitor.  All the above was exactly what I wanted to know.

Next he said most patients he sees similar to Brandon have some underlying genetic condition contributing to bone health.  I showed him Brandon's genetic tests.  Brandon has several genetic markers for osteogenesis imperfecta (the brittle bone disease Osteogenesis Imperfecta) and other related conditions. Not one marker but several.  We have never claimed this diagnosis because we have had a few physicians review the reports and indicated it is unlikely Brandon has the condition. But he was not convinced and immediately called the Baylor Genetic Clinic and asked that Brandon be seen and hopefully during our next visit to Houston in Sept.  They agreed.  He called them while we were in the room and he sent over Brandon's records.  He is concerned and wants Brandon seen because Forteo is ineffective in treating osteoporosis if Brandon has OI.  There is a different treatment option.  He would like Brandon to be followed by Baylor's clinic to rule out any of the conditions and if found he does have this or other conditions, they would do the recommended treatment.  I know kind of a shock, but I have know for many years Brandon could potentially have this condition.  I have sent his information to experts in this diagnosis and they have said it is unlikely.  But, these reports are old and I think there is newer testing.  So I don't want to blow this diagnosis off for Brandon.  It can be significant if he was diagnosed with this condition and we would need to completely change his treatment.  So once again another curve.

Why haven't I cancelled the surgery?  This surgeon recommended Brandon have surgery in 2012.  I declined to move forward.  But I didn't see the whole process through where they do the complete testing, determine exactly the surgery they recommend and then take those recommendations for second opinions.  We have very little baseline information. I need to continue to move forward to find out what Brandon will be dealing with whether it is today, next year or in a few years.  I also need for them to finalize all the tests so we can continue to monitor and see if Brandon may have a decline in the future.  I also want to get the second opinions to get their opinions on treatment and determine the best surgeon who has treated a lot of "Brandons" with great outcomes.

Thank you to all of you who have helped finding physicians for Brandon, alternative treatment suggestions, connections to other families, helping with my insurance questions and coverage, all my nurse friends for your dumbing down the medical information for me, helping us obtain the appointments for physicians that are very hard to access and all of our friends for your support.  It takes a village.  You know who you are.  Although the news of Brandon's severity of his scoliosis and osteoporosis has not changed, I feeling much better about having a plan for treatment with the best possible outcome.

More to come.  Next appointments are the surgery recommendations for scoliosis and second opinions then the genetic appointment.  AND most importantly Brandon will definitely be able to see Paul McCartney at ACL.  That is his number 1 priority.

More later
Leah

Information from Resilient Health 

(Dr Sharon Hausman-Cohen)

Genomics Consults Available to Friends & Family!

Want to share our unique genomics reports and consults to help your loved ones? Resilient Health is excited to now offer Genomics Consults for the family and friends of its members. Have them contact our office to schedule an appointment.

Many of our Resilient Health members have had their genomics reports interpreted in our office where they have been used to customize treatment and personalized prevention plans. Several of you have been asking if we can provide genomics consults for your relatives and friends. And we are happy to finally say, Yes, we can! We are now offering full genomics consults to your family and friends. They need not be a member of Resilient Health to enjoy the results of our genomics consults.

For those of you who have already "given us your spit" - results are continuing to come in, and we will review them with you at your regular Resilient Health appointments. 

What is Genomics?

For the past two years, Dr. Sharon Hausman-Cohen has been utilizing genomics research for her patients as part of their care at Resilient Health. Due to popular demand, and with the use of our own IntellxxDNA reports, Dr. Anne Stefani is now offering genomics consults to the family and friends of Resilient Health members and to our extended community.

For those of you who are not familiar with genomics, it is the field of understanding how subtle changes in your DNA help make you unique. These small changes in your DNA, also known as Single Nucleotide Polymorphisms (SNPs), can then often be addressed

with the proper use of diet and lifestyle recommendations, supplements, and sometimes medications. These SNPs provide information that contribute to mood, brain health/Alzheimer's risk and cognition, risk of macular degeneration, cardiac risk factors,

diabetes related issues, hormone related issues and much more. All of them are highly modifiable. For example, some people benefit from aspirin for reducing cardiac risk with a 54% reduction in risk, while others would be anticipated to get only a 7% reduction in risk. The knowledge that can be obtained from our genomics consults is extensive and can often be helpful in solving medical mysteries.

For individuals interested in consults who don't live in Austin or surrounding areas, we will have telemedicine genomics consults available soon!

You can read more about the use of our genomics tool at www.IntellxxDNA.com. It is getting rave reviews! One doctor who has been featured on Dr. Oz referred to the IntellxxDNA report as "game changing and mind blowing."

Read about our package options below!

Genomics Reports & Packages

We have 2 genomics packages available:

Package #1

1 Report + Review $1500 

(Either Alzheimer's/Cognition OR Medical Overview Report) 

• One 90-minute initial consult
• One 30-minute subsequent follow-up appointment
• DNA test kit and processing
• 1 report 

Package #2

2 Reports + Review $2000

(Both Alzheimer's/Cognition AND Medical Overview Reports)

• One 90-minute initial consult
• One 60-minute subsequent follow-up appointment
• DNA test kit and processing
• 2 reports

We know that you will have questions! 
To schedule your saliva collection and/or to have your questions answered, please call us at 512.717.9775 and ask to speak with our Genomics Coordinators. They will walk you through the steps and answer any questions you may have. 

Resilient Health

3410 Far West Blvd, Suite 100

Austin, TX 78731

512.717.9775 phone

512.599.5034 fax

ResilientHealthAustin.com

What is the Best Decision this Time?

I took a couple of weeks to regroup, reflect, do something mindless and enjoy seeing things I have never seen,  I was virtually unconnected with the exception of a few posts on Facebook and a few calls with Brandon through Facetime.  It was nice.  It also allowed me some time to prepare for some major medical decisions with Brandon in the next three months impacted him for may years.  Over the years I have faced many decisions concerning Brandon's life.

• At birth I asked for Brandon not to have a trach inserted as the doctors were trying to determine how to best treat Brandon.  It perhaps kept Brandon in the hospital longer but emerged with Brandon learning to clear his own airway and learning to suction his own secretions.  
• I held off on inserting a g-tube into Brandon's stomach for 1 year based on the recommendation of a therapist.  But I also had to stick a tube down Brandon's throat for 1 year just to feed him.  This left him with serious oral aversion.  
• When I finally decided it was time to insert the g-tube, he weighed 13 pounds as a 1 year old and seriously needed nutrition.  When the g-tube was inserted he immediately began to thrive.
• When Brandon was ill at age 16 with some awful bug, I took him to the ER who said he had a virus and to take him home and treat it like a virus.  It was when H1N1 was going around.  I cancelled his doctor visit for the next day and proceeded to treat a virus.  Two days later Brandon was on life support in the ICU at Dell.  I waited too long to treat the "virus" which turned out to be H1N1, but I was in speedy once I realized it wasn't.  
• When Brandon's foot began to curl inward and I realized he may lose the ability to walk I spent two years meeting with doctors all over Texas to figure out the right path.  One doctor said do nothing.  One doctor said he needed surgery on both legs and hamstrings. One doctor said he needed surgery on the foot.  I finally went to Scottish Rite in Dallas where they asked why is this happening and they wanted to know the answers before any surgery considerations.  After two years of testing we had no idea why he foot was curling, but an entire team agreed if Brandon was to walk on this foot he needed surgery to rebuild the foot.  Not just one surgery but two.  I didn't feel like there was too much risk with this surgery because if he didn't do the surgery he would lose the ability to use the foot. I also took the conservative route with only 1 foot being operating on.  
• The list goes on.  But these are all major decisions that can have lifelong impacts on Brandon.

I MADE THESE DECISIONS ALONE, BUT I MADE THE DECISIONS BASED ON AS MUCH INFORMATION I COULD FIND AT THE TIME.  

To me, the decision coming up is the hardest so far.  Two surgeons have said that Brandon needs to have scoliosis surgery.  The guess is that Brandon will need a rod inserted to t10 or t11.  For anyone healthy this is a major surgery.  For Brandon this is a risky surgery that can result in pain and possible breaks in other portions of the back or in the area where they are inserting the rod.  Brandon also has osteoporosis.  Yes we are treating the osteoporosis, but I don't think anyone is anticipating that Brandon will completely heal from osteoporosis.  The hope is that he grows enough bone to make the surgery possible.  Before his year is up using the growth drug (forteo), he can continue on the drug during the surgery recovery period which should allow the bones to heal quicker after surgery.  BUT he is still at risk of possible breaks and long term pain that currently seems to be manageable for him. 

If we don't go forward with the surgery we have heard that Brandon's spine will continue to collapse.  No one can tell me how fast, but it has been around 3 -4 for years since I last looked at this surgery for Brandon and since then Brandon's spine is slowly collapsing.  The surgeons have told us with no surgery the spine can possibly press against the lungs and perhaps can cause nerve damage so severe he may lose the use of his legs.  

The only thing Brandon is concerned with is that we have the surgery after Paul McCartney concert.  He trusts me when making these medical decisions for him.  This time I have had more conversations with him about the recovery, the surgery and the possible pain, but the decision is not any easier.  I have to admit I am struggling with this one.  I don't feel like the options and either outcome is good.  And I don't feel like I have a team working with Brandon like I have had for other decisions because he is no longing a pediatric patient.  He has a primary care doctor who seems good when Brandon has a cold or other illnesses, but this is way beyond his expertise.  I have a great integrative medicine doctor focused on treating the osteoporosis, I have the best surgeon in Austin (at least I think so) who has done a ton of scoliosis surgeries including those on young adults like Brandon, I had a second orthopedic doctor who believes Brandon needs surgery, we went to an endocrinologist who really just didn't know what to do with Brandon.  But it is not really a team of professionals looking at Brandon as a whole person and helping me and Brandon with the best decision.

The only thing we can do at this time is get as much information possible on the spine, the scoliosis and reasons why Brandon has the scoliosis besides use of certain drugs (if there are other reasons) and try to get an update on any genetic information to help determine long term outcomes. So tomorrow is the first of many more tests and doctors.  Brandon will have a myelogram and some scans done under general anesthesia at Dell Children's hospital.  The tests will take over two hours and he will have to stay in bed for two days to avoid having an extreme headache.

I have scheduled a 2nd opinion in Houston and about to schedule a third opinion in Dallas before the scheduled surgery date in October.  This one is bothering me, so if I seem obsessed asking for any bit of information know that I am doing it for the best outcome for Brandon.

Wish us luck tomorrow and as we continue on this journey. I will keep you updated.  I am prepared for many different opinions along the way from the very medical professionals who treat this type of illness.  I know it is hard for them as well because Brandon is medically complex.  But in the end, it will be me and Brandon making the decision.

More later
Leah

Happy Mothers Day

I hope everyone has a great Happy Mothers Day this weekend.  I know mine will be with Brandon at the his performance with "We are the Chorus" doing the musical "Oklahoma".  I am told Brandon has a speaking/singing part this time after years of going every Monday.  He has been kind of shy with the group but loves to go.  He announced that he if going to sing a song and has a speaking part in the musical.  He will be using his IPad to talk.  He is excited and cant stop talking about it.  He also cant stop talking about Paul McCartney coming to Austin for ACL this year for both weekends in October.  And Paul McCartney is messing with our schedule for the next few months.  

This is probably not my best mothers day because once again I am hit with some hard realities of Brandon's conditions.  It is always a process for me when I get new information.  It starts with shock, which I am in at the moment of writing this.  Then is goes to depression.  Depression that I never had before I had a special needs child but can raise it ugly head during this stage of processing information.  Then I go into research mode, there is usually some anger in there from some physician not telling me information sooner, or not giving me the complete information. Then it will end with acceptance, letting it go and figuring out the best way to make it through the new medical crisis.  This one is no different.  

We visited with three of Brandon's crucial doctors this week to see where Brandon's progress is concerning his osteoporosis, scoliosis and dyspagia.  To catch everyone back up, Brandon he has been on a series of supplements and diet to help with absorbing vitamin D3 and he has been taking a mega dose vitamin D3.  He has been lifting weights, doing more exercise and horseback riding.  He has lost about 5 pounds.  He also is taking Forteo since November to rebuild bone.  

Our Integrative Medicine physician visit - At the visit with Brandon's integrative medicine physician we went over Brandon's progress and results of recent blood work.  Brandon blood work results looks great.  His vitamin D results now show in the normal range, but the low normal range.  Apparently even after his diet change, supplements and added mega dose of vitamin D the results still seem too low.  So Brandon will continue the mega dose of vitamin D for another few months and we will recheck the levels later in the summer.  As mention previously, this physician is recommending stopping the Forteo at 1 year which will be November.  She is suggesting that the surgery be in Sept to allow 2 months of recovery using Forteo which will help build bone and shorten the recovery time before we stop Forteo.    

Gastroenterologist - Brandon has been seeing his gastroenterologist since he was 7.  He has been on a clinical trial for a drug "propolsid" for many years.  His first gastroenterologist prescribed a larger dose of this drug after Brandon was having severe oxygen saturation rates when he was young.  He spend a few years in and out of the hospital, tons of tests, many specialty visits and lots of durable medical equipment hooked up to Brandon prior to this drug.  The drug lets fluid pass through the body, including salvia, food, water, etc.  Brandon's trunk of his body was so weak he could not get fluid to pass and would fill up his airway with fluid, dropping his saturation rates.  Within two weeks of adding a large does of this drug his airway issues completely went away.  When Brandon was 9, the drug was removed by the FDA for use in the USA.  After stopping the drug within 6 months, Brandon aspirated on some food at school, lost consciousness, called 911, had the Heimlich, damage the airway and ended up in the hospital.  He had more tests where we found that once again fluids were not moving through his body.  He had to eat food only though his gtube for the next year while he relearned to swallow and recover.  We traveled to Mexico to get the propolsid which in Mexico was over the counter.  We did that for a few years until the drug was approved for a clinical trial.  Brandon was approved for the clinical trial and has taken it ever since.  But he is now 25 and we are all wondering its benefits.  So we agreed that we will stop the drug this summer, monitor to see if he has any airway issues and decide before surgery if he needs to continue on the clinical trial.  I am a little nervous about this, but open to removing any drugs from Brandon's routine not needed.  I also talked to the doctor about removing the gtube.  Brandon is eating through the mouth all meals and getting his liquid medicines through the mouth.  The doctor was worried about the upcoming surgery and whether we will need it for medications and food. So for now it stays in.  

Spine surgeon - Friday we met with Brandon's spine surgeon to talk about Brandon's surgery, what he recommends and what surgery he will need.  We have seen this surgeon before and he wanted to do surgery several years ago.  I think it is good we didn't because Brandon's bone health was even worse then.  But the news was a little more real this time.  Brandon's curve is still in the 54% range, but he is having worse spinal collapse as a result of the scoliosis.  So we discussed what Brandon's options are for now and the future.  Brandon can continue his path we are doing now and not do surgery, but based on the surgeons experience with other "Brandon's" who are multiply complex with conditions competing with one another, the spine will continue to collapse, nerves will be damaged going into the legs, and use of his legs may be impacted the longer it continues.  What is the timing of this.  Not one knows for sure but he has gotten worse. I know - it sounds awful.  The other option is to move forward with the surgery.  But due to the scoliosis, Brandon is at higher risk of complications such as breaks during the surgery.  He will need to have a rod placed from t11 down to the spine (that is their guess before more tests).  However, even if everything goes well during surgery and no bones break, the pressure from the fused portion of the back can place strain on the upper portion of the back and he could have breaks in the upper portion of the back in the future.  I am amazed based on his description of the back that Brandon doesn't have more back pain, but I know Brandon's pain threshold is so high and maybe he has learned to live with it.  He really did not want to recommend either option to us, but wanted us to know the risks both ways. I don't love either choice and really the goal is to make sure Brandon does not live a life in pain or loose the use of his legs.  I also don't want the spine to push against the lungs or heart which will cause even more complications.  So yea, a little in shock with the prognosis and treatment options, but even more in shock on Brandon's decline.  If Brandon goes forward with the surgery he will be in the hospital for 1 week and will have around 6 weeks for serious recovery and around 6 -9 months for full recovery if all goes well.  

Brandon doesn't want to have the surgery before Paul McCartney comes to town and that was all he could talk about in the visit.  So we discussed the possibility of having the surgery the week after the first ACL weekend.  We already have tickets to see Paul McCartney at ACL and as you can imagine Brandon is a little beyond excited to have Paul here.  So we are trying to figure out how to extend for one month.  Next step is to do more tests to clearly determine the extent of surgery.  More to come.  

So, spending a little Brandon time this weekend but also laying a little low as I try to get out of the depression phase of all this new information.  Love to you all and more to follow.  

A little brightness in here - Elizabeth and Brandon gave me this handmade card for Mother's Day.  Elizabeth is amazing at her art and applying it in the real world with Brandon.  Love that.  Happy Mothers Day everyone.   

Leah

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

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

More information on Brandon's health update - Nutrition

Before I forget everything from today I think may be important, I decided to write it down and share with everyone.  So to catch everyone up –

Brandon was diagnosed with severe osteoporosis.  If you look at my last blog I give an overview of recommended treatment to get him back on track.  Below is a good example of what normal bone health versus poor bone health looks like.  This shows how fragile the bone is with osteoporosis.  

We have seen 4 new physicians to develop a great treatment plan for Brandon.  A new neurologist, a new orthopedist, a new endocrinologist and a new kind of physician – integrative medicine.   From all of these visits with the new team we have put together a great plan to move seizure medications (Keppra to Briviact), add supplements to boost the seizure threshold level, a new drug to rebuild bone (forteo), new supplements to boost vitamin D and bone health, and future use of CBD oil (cannabis)  to possibly lower seizure medication levels.  In addition, we found out that we can no longer put off treatment for Brandon’s scoliosis requiring surgery on Brandon’s back as soon as possible.  

But we were missing nutrition.  Nutrition plays a large role in Brandon’s recovery.  Today we met with the new nutritionist.  She came highly recommended from several families.  She was refreshing.  Brandon has been drinking smoothies each morning.  Up until this year we had been giving him boost.  This year we have moved him to smoothies in the morning.  After researching what base to use for the smoothies we decided to use “Vega One All in One Shake”. It is plant based and has an excellent mix of nutrients.  We have been mixing it with soy because Brandon seems to react negatively to any milk based product.  However, the nutritionist recommended moving to Flax Milk to help with absorption.  In addition, she recommends we add addition ingredients for an overall boost to his nutrition.  The good news – as long as it has chocolate, Brandon usually drinks it.  I will post below the complete mix.  I am not saying this is the smoothie for everyone, but it has been blessed as a general great mix by several physicians for Brandon. 

As I suspected, she also is strongly suggesting that Brandon move to a Gluten free diet.  This is for several reasons.  First, it is excellent for seizure control and may help reduce the level of seizure medication.  But second, Brandon has quite a few indications he may have Celiac’s Disease.  The treatment for this is a gluten free diet.  I don’t think there is any downside to moving to it, so this week we will start transitioning to a gluten free diet.  The good news he can still have cheese.  She also recommended adding a probiotic and daily vitamin D.  We will be testing for several other deficiencies and may add Replesta which is recommended to treat vitamin D deficiency.  I will let you all know after we do a few more tests.  All good.

 

So how is the plan going?.  We are 5 weeks in. 

FORTEO - The Forteo injections are tougher on those giving the daily injections than probably on Brandon.  He doesn’t seem to have any side effects at this point.  He did have some muscle pain in the first week.  Unitedhealthcare approved the drug, but the Brandon’s Medicare part D plan has not and we are almost out.  So today I worked on trying to get the drug filled and moving forward approvals.  This drug must come from a specialty pharmacy.  I hope this goes smoothly and I don’t have to write another crazy blog on how frustrated I am getting approval for this drug.  But I do understand that this drug is really the only drug that rebuilds bone.  Hopefully the Part D plan will understand it as well.  Let me say, I don’t love that Brandon has to take this serious medication, but I don’t want a major break that can’t be  repaired and therefore leaving Brandon with long term pain. 

SUPPLEMENTS - Brandon has been taking the supplements to raise the threshold for seizures and the weekly dose of 50,000 IU of vitamin D3.  I have found the best way to give them to him is to mash them up and combine in some very yummy yogurt with a little honey.  I decided not to add any more supplements until Brandon is fully moved to his new seizure medicine, Otherwise, I wont know which medicine or supplement is a problem.  I will add the rest of the supplements in December.  The picture is my Sunday night routine with a glass of wine, what seems like 100 capsules and preparing packets for the week. 

BRIVIACT – That leads me to seizures.  I was anticipating that the move to Keppra was going to be hard both for insurance approval and possible seizure activity. But the medicine was approved quickly and so far, the transition is going smoothly.  Brandon was a little sleepy the first week, but he is getting more active as we move more to Briviact.  I believe that between the supplements and the new medicine Brandon is much more alert, engaged and interactive.  We will watch for the next month to see where he lands on the new medicine and any improvements in those awful side effects. 

CBD Oil (Cannabis oil) – I have purchased the recommended CBD oil (Charlottes Web) for Brandon.  But I decided not to start this until he is stable under the new seizure medicine (Briviact).  I don’t want too many changes.  Once we start the CBD oil we will modify the Briviact and lower the dose.  He could also become unstable with this change.  I didn’t want to do this until he has a good level using his new medicine.  Lots of change sometimes is not good. 

I think so far the whole plan is going very well.  We won’t test Brandon again for vitamin D levels until next year.  The doctors believe it will take at least 6 months to get his vitamin D level back to normal.  It will take at least 2 years to build back bone health.  I have no idea what we will be able to do to help Brandon with seizures, but I am willing to take a risk and I think Brandon is as well.  So far so good. Just a little crazy trying to keep all the medications and supplements organized for now.  More later.

Otherwise, gluten free diet.  Foods Brandon can eat:

Brandon’s favorite foods - Evol mac and cheese; Amys gluten free enchiladas, VIA 313 Gluten free pizza, Austin Pizza (gluten free), trader joes has lots of gluten free pasta, corn tortillas instead of flour.  Alvocados are fine.