>Many parents ask me whether I still consult with certain doctors, why do I consult with other doctors for 2nd opinions, is it because I do not trust the first doctor, how do I choose whose protocol to implement, how do I handle conflicting opinions and so on.
As you may know, both my daughters are still on biomedical treatments. Initially for Maya when she was diagnosed with Autism, and even though she has lost the Autism diagnosis, she still has lingering health issues. And Yasmin was regressing into Autism and prevented her from fully developing Autism. She is no longer at risk for Autism however like her sister, there are still medical and health issues to be addressed and monitored. Whichever doctor I consult at that time may depend on which specific issues I believe that doctor may have better expertise in. At times, I need a fresh set of eyes to give me a new perspective in certain matters. It also depends on whether that doctor has experience in certain products or technology which other doctors may not have access to due to where they are located or their training.
If I feel that a current doctor has exhausted his bag of tricks, that things have stagnated then I know it’s time to get a new set of perspectives. Remember that different doctors have different training, experience as well as seen a different set of patients. Also each doctor has different priorities and will emphasize on certain issues and may not have the same set of priorities as I do at that point in time.
So far, I have consulted with Dr Sundardas, a naturopath in Singapore, Dr Erwin Kay, an MD from Singapore, Dr Mark Westaway, an Australian MD who practiced in the UK but has since moved on to join the prestigious TRANSCEND research team in Harvard, Dr Rina Adeline, an MD and lecturing professor in Indonesia, Dr Anthony Underwood, a Syndey based MD specializing in Autism, Dr Kyle Van Dyke, an MD in the US who is also a frequent speaker at Autism Research Institute conferences, Dr Jeff Bradstreet, an MD in the USA who specializes in Autism, a member of the ARI and frequent speaker at Autism conferences internationally and Dr Michael Beilby, an Australian MD who also trained in holistic medicine and practices homeopathy. Majority of them are Medical Doctors. I consulted with these doctors for their different expertise for my 2 daughters, both with different sets of medical diagnosis and issues. I have learnt much from each and every doctor, they have helped my children in different ways, some more than others. Take note that I don’t jump from one doctor to the next after just 1 consult, I generally stick with one doctor and his protocol for at least a few months, otherwise it would be too soon to tell if his protocol is effective or not.
Because I live in Malaysia, certain products and supplements are not easily accessible to us here. Some doctors I chose from specific countries where they can get access to certain supplements. Some doctors are limited by their own country’s health regulation as to which products or treatments they can prescribe or practice. There are certain things a USA based doctor can do which a doctor in another country do not have access to and vice versa. Also some doctors are not able to supply certain products at a reasonable cost due to high taxes imposed by their country of residence. So I look to my other doctors to supply that particular product at a more reasonable cost. Dr Van Dyke and Dr Bradstreet both have children affected by Autism, whereas the other doctors do not if I’m not mistaken. They have different outlooks in matters of practice because they have gone through what we as parents live through every day. They have experienced firsthand how Autism devastates a family. However, all the other doctors still provided the same amount of commitment and support to us even though they do not have children with Autism themselves.
I don’t find any of their opinions to be conflicting, instead I find them to be a different perspective. And that’s what I’m looking for, to explore all opportunities and try different supplements. Each doctor has their own set of preferred protocol, dosage and supplements or medications. Some protocols worked spectacularly on my girls, some were appropriate for Maya, some failed in Yasmin and vice versa.
I have experienced the utmost professionalism and commitment from all my doctors. And each one has helped us get closer and closer to Recovery. I am open with my doctors on who I have consulted with, what protocols have worked for us and what has not. And I ask their help in improving the current protocol as well as exploring other issues which may not have been covered by a previous doctor.
I thank the doctors for their commitment in treating infections and GI disorders, I respect doctors for their willingness to explore different chelation protocols, I am grateful to doctors who prioritize the girls’ immune dysfunction, mitochondrial issues and low weight gain. I cherish the doctors whose advice brought on a huge leap in progress in better sleep, wearing clothes, toilet training and improved speech. I am blessed with wonderful doctors who support me whenever I bring up a new treatment that I learnt from a recent conference and their willingness to explore other possibilities with me. To their credit, they have never rolled their eyes at me whenever I come up with yet another hare brained scheme or whenever I debate with them over a difference in opinions. I have never been belittled for my ignorance, instead they support me in learning more about another treatment.
I am thankful for doctors who take the time to reply to my incessant emails. I apologize to doctors who have had to pick up the pieces whenever I try a protocol that failed, yet never were we reprimanded for trying new things. I received support, encouragement, hope and sage advice from each and every doctor. Most of all, I am thankful for doctors who listen to mothers.
It doesn’t mean that we should take all Doctor’s advice at face value and follow all instructions meekly. Many parents are afraid of asking what they think are stupid questions, there are no stupid questions. If you have an opportunity to ask and learn, do it. If the Doctor’s answer doesn’t satisfy you, ask again. Sometimes, the doctor is not good at teaching or explaining, rather they are better at actually doing than teaching. I don’t look for someone to hold my hand throughout this journey, the Doctor’s job is to recover my children, not to give me a one on one biochemistry lesson.
Many doctors don’t have the time to teach us how a supplement or medication works, I would rather use the consult time to interpret lab tests, discuss patient history, work on specific issues and how to rectify them. It is up to us to learn why doing Mb12 injections are crucial even though the test reports high amount of B12 anyway. No offense to them, many doctors are better at practicing medicine rather than giving a presentation or lecture on biochemistry. Some doctors speak in medical terms, and not able to relay the information in simpler language that us parents can understand. But all that doesn’t matter to me, what matters is that they are committed to our children and that our children thrive and improve under their care.
In my opinion, parents doing biomedical intervention should get a 2nd opinion at least once a year, ideally every 6 months if you can afford it. However, if you feel that having 2 different perspectives to be too difficult to manage and the result is a lot of confusion, then it’s best to stick to just 1 doctor that you are comfortable with. However, don’t get too comfortable or be too much in love with one particular doctor that you get tunnel vision. Open up yourselves to other opportunities and opinions, the opinions may conflict but it may open up yourself to other possibilities.
On how to choose whose protocol or dosage to follow, I rely on the doctor’s point of views, my own research as
well as my intimate knowledge of my own child. Science has not evolved enough to predict which protocol is best for a child. It is up to us to try it out and observe for improvements or negative reactions. Report the outcome back to your own doctor and move on from there.
Some parents upon getting a 2nd opinion, get confused whose advice to follow, the first doctor or the 2nd doctor’s. Firstly, if your first Doctor’s protocol is not working, then it’s time to change to a different protocol right? Secondly, if the protocol is working, you have a choice not to follow the 2nd Doctor’s advice. However, the whole purpose of 2nd opinions in my view is to challenge me to try a new direction. If I’m afraid of change, I wouldn’t have gone for a 2nd opinion right? It would be a shame to go seek a 2nd opinion and yet you refuse to try the new treatment he suggested. Might as well have saved your money and stick to the same doctor. If you are happy with your current rate of progress, then great and stick with what works. But don’t go for 2nd opinions just because your friend did it, do it because you want to achieve something else you feel has not been addressed. Like I mentioned before, don’t do a test if you are not willing to do the work required once the results are out. Subsequently, don’t seek a 2nd opinion if you do not want to deviate from your current protocol. I do it because I know there is always something new to be explored, always a new treatment or a different protocol that we haven’t tried.
I do not recommend anyone to consult with so many doctors, I never set out to ‘acquire’ that many doctors. Some doctors were better for Maya and some doctors were better for Yasmin. Not every child will require that many doctors to get to recovery, many children thrive under the care of one doctor. However, both my girls present a different set of complexities that some children may not have. Yasmin in particular was harder to treat compared to Maya.
I chat with our Malaysian biomed doctors occasionally, I also hear from many parents on their views of different doctors. I know more and more parents who are passionate in treating their children’s medical issues due to Autism, many consult with a doctor and many choose to do it solo. For those who choose not consult with a doctor, I also encourage you to seek advice not just from one source of information. I admire their courage and confidence in going on this journey without the help of a medical doctor. I learn a lot from biomed parents, their insights and knowledge of their child’s treatments are valuable.
It’s just a matter of opportunity, and you know that I am never one to let an opportunity to pass me by. If an opportunity comes by, I grab it. Time is too precious to waste and my children’s health are my priority. Never stop learning, whether it’s from books, other parents, health forums, conferences or doctors. Whether you chose to treat your child’s Autism with mainstream medicine, behavioral therapy, alternative treatments such as Biomed or homeopathy, with a Medical Doctor, a holistic naturopath or going solo on the advice of friends, however you choose, remember to keep moving forward. Avoid tunnel vision, explore all opportunities and most of all, ensure the health and safety of your child at all times.