by Marcia Hinds

www.autismandtreatment.com

 

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 immune 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 system. 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 once they are able to learn.  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.

 

The  following tips are how I find the right doctor that best fits what my child needs. 

1.  I HAVE DOCTOR LISTS BY STATES AND COUTRIES TO HELP YOU. So please email me to share where you live if you want a physician that treats autism medically. But the doctor who helped us most wasn’t on any list. 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.

Here are a few websites you can also check out:

 

And here is a website that list doctors that allow parents to make an informed decision about vaccines:
http://www.drgreenmom.com/vaccines/find-a-vaccine-friendly-doctor/

Or contact one of the “American Frontline Doctors” near you.

2.  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.) So you might put in your search engine “Integrative Medicine Physicians and Autism Near Me” or “Functional Medicine Physicians and Autism.” Some of the best physicians are hard to find, 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 only privately.

3. THINK OUTSIDE THE BOX WHEN LOOKING FOR THE DOCTOR YOU NEED. Go to conferences put on by 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). When she called Molecular Labs she asked which doctors near her location orders this test. That is one resourceful mom who found a great doctor to help her child!

4.  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. Harvey. Although Dr. H’s protocol did help, it but didn’t fully address the subset of autism her son had.  And yet for my son, Dr. Harvey’s 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.

5.  I RULE OUT ANY PHYSICIAN THAT ONLY USES SUPPLEMENTS. I tend to steer clear of the doctors who prescribe a lot of supplements, especially if you can buy them only from them. Their protocols are often impossible to continue, especially when you have a younger child hasn’t learned how to swallow pills yet. Initially, it was hard to know which medical interventions were working. But a blog post called “Is it Working?” might help.

6.  I LOOK FOR A DOCTOR WHO ISN’T AFRAID TO USE PRESCRIPTION MEDICATIONS LIKE ANTIVIRALS WHEN WARRANTED. For the milder cases diet alone may work.  Unfortunately, there is no way to know what ingrediants are truly in an supplement and which ones work. And many children on the more severe end of the spectrum (like my son) need the stronger prescription medications. The physicians who prescribe them usually give them at a higher doses. Usually kids need them continuously (and not for just a month or two).  I compare it to how a child with diabetes needs insulin for life in order to live a more typical life. The kind of doctor I look for is the one who uses whatever works best, whether it is a prescription or a supplement.  This blog post titled Use Whatever Works contains some important information about medical treatment!

7.  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 30+ years. In all that time, my son has never had an irregular blood test that indicated we needed to stop any of the medications. I worried constantly about the effect these medications would have on Ryan’s growth and development. But now, I’m not sure that Ryan would have developed normally if he hadn’t taken these medications.  Some of the children who did not take antifungals and antivirals developed seizures when they were older. For my son the antifungal meds eliminated the stimming, hyper, silly, and drunk-like behavior.  Many doctors are afraid to use these prescriptions because it puts their licenses in jeopardy.  This is because they are using the antifungal meds off-label. In India at AllDayChemist, the antifungal medications are available without a prescription. However, for safety reasons you still need a doctor who will give your child blood tests every two to three months to check their liver and kidney function. The reason God invented blood tests was to make sure these meds don’t do any permanent damage.

8.  ANTIFUNGALS AND ANTIVIRALS MEDICATIONS WERE LIFE-CHANGING AMONG OTHER THINGS FOR RYAN. So you might ask the front office of any doctors under consideration ever prescribe antivirals when warranted.  That will knock out a lot of doctors immediately. Some doctors might be okay with helping with the proper dosages for the antifungal meds and ordering the blood tests to ensure the medications won’t have any undesirable long term effects. If you email me I have the dosages needed for each antifungal medication.

9.  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 was my “go to” person when I had a medical question. Unfortunately, Melinda is greatly missed and no longer with us. Melinda had a PhD in immunology and microbiology and was extremely knowledgeable about the medical treatment for the various subsets of autism. Dr. Sharma was the one I have on my speed dial to answer my questions about the immune system and treatments. Her book contains a multitude of medical information and is in words parents understand. It is clear, concise and only about 50 pages.  It includes the lab tests your doctor might want to order.

10.  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 to change Ryan’s outcome.

11.  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 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 not 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 Meridian Lab test. Subsequently, there were only a small number of foods that caused a negative reaction. For my son, dairy continued to be the main food we always needed to avoid.

12.  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.  Fecal transplants research are also changing outcomes. And in my opinion stem cells will be important in the future, but they are just not there yet.

13. 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 or email me if you need help. I never charge for anything I do, I just want all kids to have what Ryan now has.

 

NOTE FROM MARCIA HINDS – Ryan and Megan’s mom:

Ryan began to learn and act more typical only after he received proper medical treatment combined with behavioral and educational interventions. To preview “I KNOW YOU’RE IN THERE – Winning Our War Against Autism” go to Amazon or www.autismandtreatment.com.

 

ALONE there is little we can do about autism…
TOGETHER we will be unstoppable