by Marcia Hinds – Megan and Ryan’s Mom
Children are recovering from autism and yet most doctors don’t even know this is possible. Finding the right doctor to treat the subset of autism our children suffer from, still remains one of our biggest challenges. Autism is complicated and results from many medical issues combined. Because our medical community has become so specialized, more than one doctor might be required to address all the problems with our children’s broken and compromised systems.
Although we are desperate to help our kids, we must think with our heads instead of our hearts. All doctors are not created equal. We must avoid any physician who isn’t doing this for the right reasons. And anyone who promises a “miracle cure” or “instant fix” is not the “expert” you want. If it sounds too good to be true, it probably is.
“Miracles” can happen for many children when it is possible to reduce the “total load” on their immune systems. Most improve with medical treatment. However, recovery takes time and is more of a marathon than a sprint. Our children can regain their health, but that is only happens with hard work and sweat equity. Medical interventions only makes it so our children to learn what they couldn’t before. We must also use behavioral, educational interventions to catch them up on all they missed. So even if you could repair all the problems with our children’s immune systems, they would not start speaking in full sentences. It takes a typical child almost three years to learn language.
It is also important to point out that equal effort, doesn’t mean equal outcome. Some kids have immune systems that are just too broken to fix with the current interventions. I know many families who worked as hard as we did, without the same results. Children are individuals and will respond to medical, behavioral and educational interventions differently. But we must keep spreading the word that autism is medical and TREATABLE, so the research and interventions will come that will help more kids.
Below I list websites and how I find the right doctor that best fits what my child needs:
1. REMEMBER GOOGLE IS YOUR FRIEND. Put in the kind of doctor, (immunologist, Lyme’s specialist, Pandas, functional medicine, integrative medicine or autism doc and list some cities that are near you.) Some of the best physicians are hard to find. They try to stay below the radar, since they often use interventions that are not mainstream medical practice yet. WE NEED TO PROTECT THESE DOCTORS. They put their medical licenses at risk, in order to help our kids. DO NOT LIST WHAT THEY DO PUBLICLY ON FACEBOOK or anywhere else. Share their names, but please do that privately.
2. THINK OUTSIDE THE BOX WHEN LOOKING FOR THE DOCTOR YOU NEED. Go to conferences like AutismOne, TACA, Generation Rescue, National Autism Association etc. to find doctors doing cutting edge treatments. One warrior mom who found the right doctor by calling the lab that does the Cunningham Panel (a test used to determine a kid has PANS/PANDAS). She asked which doctors near her location orders this test. That is one resourceful mom who found a great doctor to help her child! If you email Amy Cross from Molecular labs (CrossA@moleculera.com) with your location, she will also send you a list of the docs near you that order the Cunningham Panel.
3. IT IS IMPORTANT TO FIND THE DOCTOR WHO CAN TREAT THE SUBSET OF AUTISM THAT YOUR CHILD HAS. Not all protocols work for all kids. I know one mom who didn’t find the right doc until her son was age 16. Although all the medical interventions they did brought improvements, they weren’t enough for full recovery. I met this family when Ryan was still seeing Dr. Goldberg. Unfortunately, Dr. G’s protocol didn’t address the subset of autism her son had. And yet for my son, his protocol was life-changing. This warrior mother never gave up and went to four more doctors until she found the one who knew how to treat the Lyme’s and parasites that were holding her son back. Now he is in school for the first time. He is getting all “A’s “in mainstream high school classes. He has an aide to help him learn how school works, because he only be home schooled before. Great example of why we should NEVER GIVE UP until we find the answers to help our children.
4. HERE ARE SOME WEBSITES TO FIND DOCTORS, but they are only a starting point. (And email me the ones you know about that I haven’t included.) The doctor who helped us most wasn’t on any of these lists. You will know when you have found the right physician by results. If your child doesn’t substantially improve after 6 months, start the search again.
https://aealliance.org/clinicians/ (has docs from other countries listed too.)
http://www.stopcallingitautism.org/find-doctor.html (has docs from other countries listed too.)
http://www.pandasnetwork.org/research-resources/international-providers/(has docs from other countries listed too.)
http://www.icimed.com/member_search.php (integrative medicine docs)
http://www.askdrsears.com/topics/health-concerns/vaccines/find-vaccine-friendly-doctor-near-you (doctors who don’t push vaccines)
(another list of vaccine friendly doctors)
5. I RULE OUT ANY PHYSICIAN THAT ONLY USES SUPPLEMENTS. I tend to steer clear of the doctors who prescribe a lot of supplements. Their protocols are often impossible to continue, especially when you have a younger child who doesn’t know how to swallow pills yet. Initially, it was hard to know which medical interventions were working. But this blog post called “Is it Working?” will provide a few clues that might help.
6. I LOOK FOR A DOCTOR WHO ISN’T AFRAID TO USE PRESCRIPTION MEDICATIONS LIKE ANTIVIRALS OR ANTIFUNGALS WHEN WARRANTED. For the milder cases the supplements work, but many children on the more severe end of the spectrum need the stronger prescription medications. The physicians who prescribe them usually give them at a higher doses and some kids need them continuously (and not for just a month or two). Doctors who prescribe these drugs, must also require blood tests every two to three months to ensure they continue to be safe. The reason God invented blood tests was to make sure these meds don’t do any permanent damage.
7. THE KIND OF DOCTOR I LOOK FOR IS ONE WHO USES WHATEVER WORKS BEST WHETHER IT IS PRESCRIPTION OR SUPPLEMENT. This blog post titled “Use Whatever Works” contains some important information about medical treatment!
8. FYI- IF YOU LOOK UP THE MEDICATIONS ON THE INTERNET THAT WERE LIFE-CHANGING FOR RYAN, YOU WILL BE TERRIFIED BY THE POSSIBLE SIDE EFFECTS LISTED. Ryan has been on the antifungals and antiviral medications in one form or another for 20+ years. In all that time, my son has never had an irregular blood test that indicated we needed to stop any of the medications. So quit making yourself sick like I did. I worried constantly about the effect these medications would have on Ryan’s growth and development. But now, I’m not sure that he would have developed normally if he hadn’t taken them
9. ANTIFUNGALS AND ANTIVIRALS MEDICATIONS WERE LIFE-CHANGING AMONG OTHER THINGS FOR RYAN. So you might ask the front office of any doctors under consideration, if they ever prescribe these medications when warranted. That will knock out a lot of doctors immediately. And the physician you chose must require blood tests every two to three months ensure the prescriptions won’t have any undesirable long term effects.
10. ANOTHER GREAT RESOURCE IS DR. MELINDA SHARMA’S BOOK A Parent’s Guide to the Common Immune System Issues in Autism Spectrum Disorder . Dr. Sharma is my “go to” person when I have a question. Melinda has a PhD in immunology and microbiology and is the smartest and kindest woman I have ever met. She is extremely knowledgeable about the medical treatment for the subsets of autism. Dr. Sharma is the one I have on my speed dial to answer my questions about the immune system, doctor referrals, and treatments.
11. DAIRY AND DIET CAN DRAMATICALLY AFFECT OUR CHILDREN. This is something that can be started immediately. When Ryan was little I called the Autism Research Institute for help. That call changed our lives. Here is a blog post called, “What Could A Cow Possibly Have To Do With Treating Autism ” that explains what happened that day.
12. ALLERGY OR FOOD SENSITIVITY BLOOD TESTS MAY HELP YOU DETERMINE WHAT NEEDS TO BE REMOVED TO REDUCE THE “TOTAL LOAD” ON OUR KIDS IMMUNE SYSTEMS. We did a blood test with Meridian Labs http://meridianvalleylab.com/ to determine which foods caused an immune reaction and needed to be eliminated. We only removed the foods from Ryan’s diet that tested in the “highly reactive category.” There would have been anything left to eat if we had eliminated everything he reacted to back then. Before treatment our kids react and appear allergic to so many things, but that is really not the case. The reason they react to everything is because their immune systems are extremely compromised. After we helped Ryan regain his health, we repeated the test. Subsequently, there were only a small number of foods that caused a reaction.
14. THERE IS ALWAYS NEW HOPE ON THE HORIZON BECAUSE OF NEW RESEARCH AND NEW TREATMENTS. One company is working on development of a new medication to treat brain inflammation! That will help kids with many “psychiatric” conditions. And the stem cell and fecal transplants research is changing outcomes.
15. RECOVERY TAKES TIME. AUTISM IS COMPLICATED SO DON’T GIVE UP TOO SOON! At the beginning of this thing I never would have believed all Ryan accomplished was ever possible. When my son was still in middle school, my big dream was that maybe someday he could hold a job at McDonald’s and live independently. I never imagined his life as it is today. Most times I was hanging on by my fingernails. Sometimes I didn’t have a plan, and had no idea of what to do next. But eventually I learned to trust my instincts and just keep going no matter how exhausting and emotionally draining life on Autism Island became.
This is a lot of information and your head is probably spinning. But you can do this! I will be here to help you any way I can. You are not alone any more. Just call me or email me if you need help.
ALONE there is little we can do about autism…TOGETHER we will be unstoppable!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom :
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism” click on http://a.co/a5GWrpM
Contact info for Marcia: