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!
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
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
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
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