Wednesday, July 4, 2018

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.
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

Saturday, May 12, 2018

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.   


Tuesday, April 17, 2018

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.  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

Thursday, January 11, 2018

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.

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.  

Monday, November 6, 2017

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.

Friday, October 6, 2017

A Brandon health update - it all about the bones.

This month has been filled with highs and low, a little depression and little hope, some shock and some information answering long unanswered questions, conflicting opinions and a little more clarity and finally the beginning of a plan to get Brandon's health back on track.  I normally would not post this technical of a post.  But I had several parents asking me questions about what I found out because their child or young adult had something similar.  Also this is a plan just for Brandon and all of his medical issues and complications.  I promised to let everyone know what was recommended.  Special thanks to Ivy, Linda, Rosemary, Patty, Betsy, Norine and many more of you for the information.  We would not be this far without you.  So here it is.

In Sept, I made an appointment with Brandon's new primary care physician (PCP) for a regular physical.  Right before the appointment, Brandon was limping on his foot.  When I checked it, it appeared swollen and bruised.  At the appointment, I asked the PCP to check Brandon's foot.  He did an x-ray and said he didn't see a break in Brandon's foot, but Brandon's bone health did not look good.  He suggested Brandon do a bone density exam and scheduled it that week.  We had the bone density test.  The results showed that Brandon's bone density is seriously low with a high probability in the future of a break in the spine and femoral neck. I pulled the prior bone density report from 2008 (referenced in the new report) and thought that the bone density had decreased 30%, but after talking to a few physicians, it is actually 30% better.  That is great news.  The bad news is that the bone density is still very bad.  I reached out to some other moms, professionals, Brandon's network and his aides.  I decided to get some information from several sources before making decisions on treatment.

We went to a new adult endocrinologist first.  She was recommended and referred to us from Brandon's new PCP.  We both liked her, but admitted she doesn’t have many patients similar to Brandon.  She reviewed the new and old bone density report and confirmed it had improved, but was still very bad with a diagnosis of osteoporosis.  She said this was unusual for a young man who is 24 yrs old.  She believed that the low bone density was caused by a series of seizure medications and occasional steroid treatments.  She agreed that the current seizure medication Keppra can cause low bone density, but was unlikely to be the sole reason why Brandon has poor bone health.  She ordered some blood tests and urine tests, but did not recommend any treatment except to increase vitamin D for the moment.

Last week Brandon also saw a new adult orthopedic and spine physician.  He was recommended by Brandon's pediatric orthopedist.  We went in just to discuss low bone density, but in the waiting room and over the last few weeks I remembered that Brandon has been complaining about his back hurting. This physician is not a surgeon.  This physician reviewed Brandon's previous scoliosis x-rays and the bone density scans and started discussing the possibility that Brandon will need scoliosis surgery.  Yea I know, we didn't go in for that.  But he explained that this is about Brandon's health in 10 years not his health now.  He said Brandon's scoliosis will decline about 1 ½ percent each year. After a certain degree of curvature it is more difficult to repair the spine.  Brandon will most likely be in pain and possibly need to use a wheelchair if he does not do the surgery.  He also said that it is not possible to do the surgery at this point because Brandon's bones are like Styrofoam, so rods and pins would not stay and could possibly break the bones. They need the bones to be like hard wood for the surgery to be successful.  I told him that the pediatric orthopedic physician did not recommend surgery but the adult orthopedic surgeon did in 2013.  They disagreed on the curve of the spine (46 vs 52%).  He said he wanted to do another x-ray and compare all the films.

The next appointment was with Brandon's new adult neurologist.  He was highly recommended from several of my "mom" friends.  We decided to go see him because Brandon may need to change seizure medications or determine alternatives to lower the dose to allow for absorption of vitamin D.  The neurologist went over options for medications and asked about Brandon's side effects from the medication.  One of the side effects he didn't care for and suggested we move to Onfi.  We also discussed CBD oil such as charlottes web as a possible way to lower the dosage.  The visit was good.  But I came home and reviewed the side effects of Onfi.  Side effects listed include – “may make swallowing more difficult, may cause drooling, may cause respiratory infections”.  All of those side effects are Brandon's weakest areas.  I don't believe we will move to Onfi.  Instead, I asked the neurologist if going to the new generation of Keppra (without as many side effects) would make sense for Brandon.  He agreed and we are about to start adding in Briviact, while reducing and eventually removing Keppra. The good news is the transition should be smoother because the drugs are similar.  Every previous transition has resulted in a hospital stay.  I am hoping this one is much better.

The last appointment was with a physician recommended by several people (with a little push).  This doctor practices integrative medicine.  Integrative medicine is
healing-oriented medicine that takes account of the whole person, including all aspects of lifestyle. It emphasizes the therapeutic relationship between practitioner and patient, is informed by evidence, and makes use of all appropriate therapies. I have been excited for Brandon to see this doctor because I was hoping she could put all of this information together into a full plan of care, and she did. 

Bone Health - This doctor believes Brandon's o
steoporosis is caused from past medication use (both steroids for his lung issues over the years and seizure medications - not as much contributed to Keppra) and Brandon's slow progress to walk and actively use all muscles earlier in life. The doctor discussed Brandon's poor bone quality and the goal to improve bone quality. We also discussed that Brandon's scoliosis progression has been linked with bone quality and been shown to be a better marker of poor bone quality and fracture risk even more than bone density.  She explained that because of Brandon's young age it is extremely important he rebuilds his bones. Her treatment recommendation was use of Forteo to rebuild bone via stimulating the osteoblasts directly. She is hoping for use of Forteo for at least 1 year, possibly 18 to 24 months.  Brandon is not thrilled with this recommendation, but I had two very qualified physicians insist this is the only treatment to restore bone.  The medicine must be injected daily.  In addition, Brandon will need vitamin D.  Brandon will take 50,000 units of vitamin D a week to increase vitamin D levels approximately 10 points a month.  In 2018 he will recheck his vitamin D levels. She also recommended increasing potassiums citrate either with foods or by supplementation to help decrease calcium excretion in the urine. We will start by trying it with food as many foods like coconut water, tomato sauce, beans, squash and baked potatoes with skin are high in potassium. We also discussed using a vibratory platform for 10-15 minutes a day at 40 Hz.

Seizures - We discussed a more natural approach to seizures, with use of natural supplements to raise seizure threshold and CBD oil to see if we can lower the seizure medication and avoid some of the side effects.  The main ones recommended include:

  • N-acetylcysteine (NAC) which is used in individuals with various lung issues to decrease respiratory infections which would be a secondary benefit for Brandon and is used in children with cystic fibrosis from a very young age at 1200 mg twice a day. We will start with 600 mg twice a day but may increase to as high as 1200 if he is not having any stomach issues or other side effects.
  • Avmacol- The other supplement that comes in a chewable which has been studied with autism and also has been shown to raise the seizure threshold is sulforaphane. The brand that came out of Johns Hopkins and is most well studied is called avmacol. This also can help with neuro regeneration and Brandon does have a gene variant associated with nerve issues.
  • CDP-choline -The third supplement which is well studied in children as is used for strabismus but also helps with nerve repair and can help decrease seizures is Citicholine or CDP-choline.
  • CBD oil to help with side effects and possibly decrease seizures. 

Other supplements to consider for Brandon related to mitochondrial issues - Brandon has a genetic marker for these. 

  • Methylfolate - This helps with balance issues and muscle atrophy.
  • Acetyl L-carnitine - is a mitochondrial supplement; and
  • CoQ10, UBQH, Alpha lipoic acid
  • CPT2/CPT3 (carnitine palmitoyl transferase) to help with fevers and illness such as H1N1.
  • She also recommends Brandon eat carbohydrates round the clock if he gets a fever.

The doctor reviewed Brandon’s genome results and discussed updating the genome tests because he has a lot of genetic potentially pathogenic variants we can explore later for clues as to how best optimize Brandon's functioning.  

I know - WOW.  We will start with the bone health medications and gradually add the seizure supplements and if he is doing well add the others.

As I was sitting in her office, the ortho physician called.  He stated that Brandon's scoliosis is now at 52%.  He again explained that Brandon's scoliosis will continue to decline.  He said we must improve his bone health and he must have surgery to repair. Yea another OMG,

Lastly, we discussed with the different physicians and I think it was agreed that Brandon needs to re-look at his diet.  Through my mom network I found a great dietician that specializes in these more complex cases.  She has helped several of my friend’s young adults with dramatic results.  So I have called to get a nutritional appointment.

We stopped Brandon's horseback riding.  But I asked each physician about his ability to ride.  They all agreed the riding will improve his bone health as long as someone walks with him to make sure he doesn't fall he should be fine.  We will start back up.

So this weekend we will start vitamin D, Forteo and Briviact and take it from there.  I will let you know if we see any results along the way.  I am feeling a little sorry for Brandon having new medicines and changing his seizure medicines. But Brandon always amazes me because he seems to take new treatments, tests, doctor appointments much better than I ever would.  I have a rock star son.  Love him.

Saturday, December 31, 2016

2016 a Reflection on the Year and 2017 More to Come.

I realized today that it has been over 1 year since I have posted on the blog.  There have been so many changes and in some ways still the same.  So here is our 2016 year of Brandon and Leah and  an update on our quest for the "good life" for Brandon.  Sorry if I have been too darn busy this year to get with friends, work on more projects and get out for some entertainment.  I plan on 2017 being a better year, a more well rounded year for us all at the Rummel compound. 

A little reflection on the last year made me realize that Brandon's plan for a "Good Life" is always a work in progress with changes every week.  I wasn't certain what life would be like after Brandon left school.  I can honestly say life is about Brandon's choices now - his guitar lessons, singing in "We are the Chorus", participating in Exceptional Saturdays, hanging with Rush on "Off the Beatle Path" Radio show each Monday, RedArena, hanging with his friends, staying home with his roommate and calling his mom whenever he wants on FaceTime.  It is an exciting time and fun for me to see Brandon grow so much. But there are also 5 people helping Brandon, a roommate with a full time job, sicknesses, medications and DME supplies, reporting to SSI, meeting with case managers, scheduling, changes in the weekly events, bank accounts, keeping up with all things Brandon.  This part really requires me to be on my toes at all times.  As long as I am 100%, in the same city, and paying attention to all things Brandon it works fine.  So this next year (2017), trying to make this smoother  is something Brandon's personal network "The Cavern Club" will be working on. 

Brandon's arrangement to live in the house next door with a roommate is really working very well.  Brandon likes this arrangement much more than having a caretaker.  We will continue with this arrangement for the future.  Brandon's jobs are going great. He still works at UT and a DME company each afternoon except Fridays.   Here are the more significant events of 2016. 
Brandon and his roommate Nathan

The Fire - On Nov.30th, 2015, Brandon had been sick.  I was very pre-occupied with working and trying to care for him.  I knew he had become worse and we needed to see the doctor.  I finished up my last conference call, made an appointment for the urgent care center, grabbed Brandon and headed over to urgent care clinic.  Normally in the early evening (6:00), I would check on the chickens and the goats and lock them in the barn for the night.  But I didn't have time this evening.  I was almost to the urgent care clinic about 30 minutes from the house when Tony called me.  He sounded panicked.  He had just pulled up to the house.  As he was getting out of the car he saw an orange glow.  He turned towards it and realized the barn was on fire.  He ran to check on the animals and heard them down the hill. He called 911 and then he called me.  Of course he wanted me to come home.  So a little secret here - all you special need moms will understand.  I thought - the fire trucks are on their way, Tony is there, it will take me 30 minutes to get home and there is nothing I can do about the fire at this point.  But I knew Brandon was very ill.  I went ahead to the clinic.  Luckily, our physician got us in and out with a diagnosis of pneumonia.  I drove pretty fast back to the house.  The street was blocked off and there were a ton of fire trucks, a pool for water and more firemen than I have ever seen.  It turns out that there was a volunteer fire department training around the corner with 40 volunteer fire fighters who just came to our house instead.  The electricity was out and there had been some movement of the fire in the trees very close to the house.  The barn was the size of a small house.  In the barn was a workshop, storage, a large chicken coop, an area I built for the goats, a green house and the starting of a little guest space.  Everything was gone.  The smell from the fire was almost unbearable and toxic.  I am telling you this because this has been taking a great deal of my free time for the last year. Receipts from tools, upgrade to the structure, filing claims for replacement; and clean up and replacement all has been long and slow and we are not really done yet. Insurance covered about 1/3 of the costs of the structure. All of the animals survived.  I even found a chicken buried under the wet dirt.  AND the fire fighters saved the house.  If they had been 10 minutes longer it would have been much worse. But the area now is clear and replaced.  Still more work for be done, but this property always has more work that needs to be done and really is why I like it so much. 

Medication and Recovery- At the beginning of 2016, Brandon started having seizure related health issues.  This started after the pharmacy informed us that Brandon's generic medication for his seizures was on "back order". We started using a different manufacturer and within a few days Brandon started having symptoms ranging from his eyelid "flopping", to an aura, then a full blown seizure.  We changed to a new generic after some study on his generic options.  There were over 25 different manufacturers for this drug.  Really there is no way to determine how closely one drug is compared to the name brand.  On the third generic drug, Brandon started having more subtle reactions such as not wanting to leave the house, objecting to going with aides out in the community, having what I would call panic attacks, telling others he doesn't feel good and doesn't want to work.  If you look up the side effects for this drug these can be some of the more complex side effects.  It took a while to put the symptoms with the drug.  Brandon is also still recovering from his trauma he incurred in 2015, so we worked closely with a psychologist, a nurse, a pharmacist and his neurologist.  After another try on a 4th generic and having conversations with the original generic company who said the drug would no longer be manufactured, we all decided that Brandon needed to be on the name brand medication for now. This would rule out that his issues are seizure related or not seizure related. Brandon takes a liquid form of the medication and the doses and ingredients differ from the pill form.   Within 1 week of changing back to the name brand, Brandon was back to his funny, goofy, music loving self.  I think he will always have some ups and downs on this drug, especially if he doesn't get enough sleep or is sick, but this drug (Keppra) allows Brandon to be almost seizure free and maintain his own personality without the severe sleepy side effects.  I have posted for many, many, months on my fight for coverage of this drug with the insurance companies/Medicare Part D/Medicaid.  It is finally resolved after hour and hours of work at least for one year. 

Socialization - Last year while working with Brandon's network we decided to try setting up Friday get togethers with other young adults with special needs, some aides and volunteers with the goal of socialization within the community.  I started a group called the Dripping Springs Friendship Club and set up a Facebook page for people to join.  We now have 75 members and are very active with outings including bowling, yoga, art, movies, music, swimming, a farm, the zoo, RedArena, a recording studio, evening parties, making arts and crafts for a sale.  The group is all volunteer and our events are voted on by the group.  I help post the logistics of each Friday along with Brandon's job coach Mary.  For Brandon who really needed more socialization, he no longer objects to going and has started interacting with the group.  For the group, I have seen such growth and confidence.  I am so proud of each of them for getting out in the community and developing friends and confidence in their own value.  For me, when I am lucky enough to hang out with the group, it is so refreshing to be part of such an honest, innocent, sincere group of young adults.  I leave with a whole new recharge on life.  Anyone who would like to volunteer or join please feel free to contact me.   

Brandon and the Beatles - This was another big year for Brandon and his love of the Beatles.  Brandon has been going to the KOOP Radio show Off the Beatles Path for at least the last 4 years, side by side with Rush Evans (the most amazing guy with a heart of gold) and Mary (Brandon's job coach and music lover).  This year Rush has been talking to Brandon about using his IPAD communication device to speak on the show.  At first we were working with Brandon and his speech therapist for a few Beatles facts he could present on the show.  Then Rush and Brandon expanded it to a few more Beatles facts, then Rush encouraged Brandon to guest host the whole show.  For Brandon, guest hosting the whole show was a little overwhelming.  Rush wanted Brandon to explain his love of the Beatles and what the Beatles music means to him.  Working with his speech therapist for around 6 months he finally had enough programmed on his device to guest host. We worked with Brandon doing the show live, but when pressing the keys it is really too easy to miss a key or accidentally repeat a key.  We decided to lesson the stress and downloaded Brandon's verbal portion of the show.  Thanks to Mike Morgan at "The Zone" for helping us download off Brandon's device.  Rush found the right versions of the songs Brandon wanted to present and added them to Brandon's information.  On the day of the show, Rush and Brandon picked out music live during Brandon's speaking part.  I think the segment came out great and I was lucky enough to sit in the studio while the show was broadcasting.  Here is a link to KOOPs article KOOP Radio Article on Brandon .  Here is the link on the article from the company that developed the software. Article from Tobyiidynavox on Brandon .  Brandon is now working on a new guest host show to be played in the future.  He would like to interview several key people about what the Beatles music has meant in their lives.  It should be a fun show as well.  Coming in 2017.

Brandon the Advocate -  Over the years I have encouraged Brandon to speak his voice on issues that he cares about.  His first hearing was when he was on the Medically Dependent Children's Program here in Texas.  The state was planning to make changes impacting Brandon.  He went with me to testify. He testified at changes with the Medicaid consumer directed program, at the Capitol on education issues, participated in a Capitol briefing from the Children's Policy Council, educated United Healthcare on how to talk to a person with intellectual disabilities using a communication device, develop a short film on the ADA, and went with the Coalition on Texans with Disabilities during their legislative meetings. Brandon has no option not to advocate because I am so involved in disability issues from many sides.  This year United Healthcare asked Brandon and me to present at a National NACDD conference in Washington. They wanted to hear about quality indicators for persons with intellectual disabilities.  Brandon was asked to present on his person centered plan and his personal network.  I have to say Brandon did better than me because I was a little pre-occupied with him - ha. We programmed his device and he spoke about his person centered plan. He was a little sleepy at the beginning of the panel and told me he was going to sleep until they got to him AND HE DID.  But he pulled it off and did a great job. Here is a link to his presentation. 


Part of being an advocate is selecting and voting for those who represent you.  This year was Brandon's second national election.  He has really looked forward to exercising his right to vote, because some of friends have not been able to exercise their rights due to their disabilities.  I have explained to Brandon he is representing more than himself when he advocates.  So this year Brandon watched every debate both democratic and republican. He watched the general election debates.  He watched how the candidates treated people with disabilities and promoted policies concerning people with disabilities.  He probably knew more facts on each candidate than me. Before the election we sat down and went over the list of choices for all offices.  I asked him to think about what is important to him in a candidate, who supported policies for people with disabilities, who treated people with disabilities with respect and understanding. I am proud of him.  He made his choices.  The night of the election we had a few people over to his house to watch the election results.  Brandon was very excited with anticipation.  Around 9:00pm, I could tell which direction the election was headed and knew this was going to be a long night.  I told Brandon he really should go to bed and we would have the results in the morning.  We all left Brandon and his roommate.  At 2:00 am my FaceTime rang.  I immediately answered because it was Brandon.  He said "Momma I have some bad news".  I said Brandon did your candidate lose.  He said yes.  I said I would be over in the morning to talk to him about it.  The next morning I went to his house.  He said to me - "Momma everything we be alright".  I said to him.  Brandon we are just going to have to work harder to advocate for people with disabilities.  He said yes we will.  Wow is all I can say. Really proud of him.

Momma's health - I don't post about this too much.  But as you heard above, things go well as long as I am 100%.  In October I caught an awful bug, which turned into pneumonia.  Two things that worried me is that Brandon might catch my bug and his version of the bug could have been very serious.  And if I even had the energy to take care of him on the weekends.  I kept thinking this bug was going to go away in a couple of weeks, but it ended up 2 1/2 months of a pretty significant illness.  Thanks to all of Brandon's aides, Tony and my brother for helping me during the 2 1/2 months.  It has really opened my eyes to paying attention to my health - a goal for 2017.  Perhaps I should start with a check up for the first time in 10 years.   

So on to 2017.  What is clear Brandon and I will be working harder this year advocating for people with disabilities. I am proud of Brandon and it is so great to see his growth.  I really can say he is living a Good Life and as Brandon will say - there is still more. 

So I heard this from a friend today struggling with cancer and we would like to share with you.
  • Realize your every BLESSING
  • Go a little slower
  • Kiss a little longer
  • Hug a little tighter,
  • PRAISE a little harder,
  • BE safe, be careful and know that GOD LOVES YOU and SO DO Brandon and I. 
On to 2017