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.

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 osteoporosis 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.