Joshua's Story

John and Kim Mann  stories@biasd.net

[Note: We reference many products and companies in this article  in the hopes that they will be helpful to you as they have been very beneficial for our son. We do not receive any compensation from these products.]

The Adventure Begins

We have found that because autism is a very complex disorder every child will respond differently to biological interventions. For some interventions, your child will respond immediately, for others, he will respond gradually over time and all too often you will see little or no results and possibly even a negative reaction. Our advice is never to give up! When your child fails to respond to a particular treatment, assuming you have stuck with it long enough, consider that as one more possible treatment you can cross off your list. You will eventually see progress if you stick with it. Also know that there are hundreds of other parents that have gone through the same discouragement and know that there is a light at the end of that long tunnel, even if you might not be able to see it right now.

We want to share our experiences with autism because we believe that other parents may benefit from our trial and error. Almost everything we have learned has come from other parents of autistic children. This is our opportunity to give back just as others have given to us.

Dealing with autism on a daily basis can wear on you as a parent. God in His grace gave us the strength to make it through the worst days. The prayers of our church and family have given us hope as we have seen God answer our prayers, not always the way we wanted or in the time we wanted. God has never failed to help us through each day.

Joshua's story begins sometime around the age of 17 months. Joshua was beginning to potty train and he had hit all of his milestones. He had a fairly diverse diet including milk, orange juice, fruit, cheese, bread products, etc.  His was also in very good health and was up-to-date on all of his vaccinations. We have since learned that one or more of the vaccinations may have damaged his already weak immune system because of his genetic inability to detoxify properly.

At around 17 months, we noticed a number of changes in his behavior. He began to refuse almost all foods except for milk, wheat thins and gold fish. He would no longer sit on the potty. He had a fixation with cars and would play with his cars for hours, lining them up all around the family room and laying his head on the floor watching the wheels turn around. He also developed a love of trains and really anything that he could line up around the house. If something did not go his way, he would go into a rage, sometimes screaming for over an hour. His speech development seemed to stall and he often expressed himself by grunting or pointing to things. 

Seeking a Diagnosis

When we took Joshua to our pediatrician, he seemed to think that his diet change and other changes were nothing to be concerned about. However, we decided to have him evaluated through the Early Intervention Program. As a result of that evaluation, we took Joshua to speech therapy for several months with some improvement. While encouraged by this progress, we were still discouraged by his significant regression in many areas.

Shortly before Joshua's 4th birthday, we began to research on the Internet and found the first accurate description of our son at Childbrain.com. Joshua exhibited nearly all of the characteristics of autism, but since he did have some social interaction, we self diagnosed him as having a Pervasive Developmental Disorder (see Bernard Rimland, Ph.D. on "PDD"). After his 4th birthday, we began an evaluation process through our school board, which took six months to complete. They diagnosed him with a developmental delay, which did not qualify our son for any special services. The evaluation had a number of significant errors and we decided to seek an independent evaluation. We took Joshua to Comprehensive MedPsych Systems, Inc. for an evaluation and he received an official diagnosis as mildly autistic. During this process, we received a wealth of support from Mary Smith, who is the Executive Director of Family Network on Disabilities of Manatee/Sarasota.

The GFCF Diet

After more research, we came across a diet called the Gluten Free/Casein Free diet. From our research, we discovered that many children on the autism spectrum showed significant improvement after starting this diet. We also found that removing casein can have an almost immediate effect (days) while removing gluten may take months to take full effect.(Read more about why this diet can help at AutismWeb). Interestingly, we discovered that frequently, children that respond to this diet are addicted to milk and products containing wheat. This description fit Joshua exactly because he would not go anywhere without his milk and for several months all he would eat was wheat thins. Though we don't recommend this, we went cold turkey and removed all sources of gluten and casein from Joshua's diet. We advise removing sources of casein first and then gradually taking away foods with gluten by replacing his favorite foods with a similar gluten free food. We switched him to orange juice and home-made cookies from Lisa Lewis' great book, Special Diet for Special Kids. (Later we discovered that Joshua had a severe food sensitivity issue with orange juice).

We started to keep a log of his progress after starting the diet. This was extremely helpful because we found out that there were many foods that we thought were safe, but caused Joshua to react and only by looking at his log were we able to narrow down the cause. Within 3 weeks of starting the diet, Joshua started to use the potty regularly for the first time in about a year and a half. We saw significant improvement in his behavior with fewer and shorter temper tantrums and improvements in his speech. What lingered for him though was a very restrictive diet, causing him to remain at less than 30 pounds of weight for several months. He also continued to have chronic diarrhea.

Finding a Doctor

Our next step was to find a doctor that could help us while continuing to research biological interventions. This was no small feat since many doctors are very skeptical of these types of interventions. Our own pediatrician was of little help. His only recommendation was to give him a food allergy test involving skin pricks, which came back negative as we suspected it would. We eventually found a local doctor, Dr. Marc Weinberg who practices holistic medicine and who was able to get us some of the labs we needed.

Dr. Weinberg ordered an IgG Food Sensitivity Assay from ImmunoLabs. The sample below shows results you may expect to see from this type of test. The numbers after foods in the reactive test results section indicate increasing levels of antibodies to the tested food. Since foods that appear in this test may not show up in a traditional food allergy test involving a skin prick, it is very useful in determining which foods your child should avoid. We found that when we took away foods which our son was eating which showed up on his lab results, his behavior improved.

Sample of IgG Lab Results

During our search for doctors, Kim found out about BIASD while at a local health food store and that is where we learned much of what we know now. We learned that gastrointestinal problems are very common in autistic children. Joshua has had many gastrointestinal problems, including chronic diarrhea that lasted for about 2 years and chronic loose stools.

One test that has been extremely valuable in helping us identify the gastrointestinal problems was the Organic Acid Test (OAT) from Great Plains Laboratory. Joshua has now had 4 of these tests at intervals of a couple months and each test identified intestinal problems that our doctor would not otherwise have been able to diagnose. Joshua had a severe Clostridia infection which was a main cause of his diarrhea and also contributed to his behavioral and developmental problems as well. We found that when his Clostridia levels came down, his behavior improved dramatically and he was much easier to teach. His labs also showed very high levels of yeast in his intestine and bacterial overgrowth. Over time, we have been able to determine when his yeast and bacteria levels were high by his behavior and each time the lab results confirmed our suspicions.

Our local doctor was a great help, but we still needed direction from a doctor specializing in autism. While searching the Internet, we found out about Dr. Bradstreet, who is on the leading edge of research into biological interventions for autism. Dr. Bradstreet and his assistant, Scott Smith, PA, provided much insight into the gastrointestinal issues and how to deal with them. Because there can be multiple factors involved in gastrointestinal problems, it is critical to consult a doctor skilled in this area.

Gastrointestinal Issues

Scott Smith prescribed Diflucan for the yeast, which was very helpful in bringing his levels down quickly. Long term, Joshua takes Nystatin 4x per day and probiotics. For Nystatin, it must be filled at a compounding pharmacy which can add a natural sweetener such as Stevia instead of sugar. Sugar feeds yeast and is counter productive in treating yeast overgrowth. For probiotics, we have used Kirkman's Pro-Bio Gold and Culturelle and have now replaced Culturelle with Global Health Trax ThreeLac which is used to fight Candida.

For bacterial infections, Joshua was prescribed Flagyl (Metronidazole), which was very effective in clearing up an infection that turned up on one of his OAT tests. Flagyl is especially effective against anaerobic infections occurring in the intestine. Since Flagyl is an antibiotic, it is important to give your child a broad spectrum probiotic while taking it. The intestine is lined with billions of bacteria, both good and bad. Antibiotics kill off both good and bad bacteria, so it's necessary to take probiotics to replace the friendly bacteria and maintain the immune system.

Immune System

Getting rid of toxins is a real problem for autistic children, who often have severely compromised immune systems. Labs for Joshua revealed dangerously high levels of ammonia. The treatment was to give him 300 mg of Alpha-Ketoglutaric Acid 2x per day. We purchased this through Kirkman Labs, but you may be able to find it at your local health food store. We recently switched to PureKids when we found that Joshua had other detoxification problems that showed up in his lab results. We also started giving him ImmunoKids shortly after he contracted a urinary tract infection. Bad bacteria in the intestine impacts the ability of the immune system to respond to these infections and we found this to be true of Joshua as it is with many autistic children.

Vitamins and Minerals

Autistic children tend to be low in vitamins and minerals because of their inability to properly absorb them. We have been using liquid forms of some vitamins and minerals which are more easily absorbed. Joshua takes calcium, magnesium and zinc Mini-Minerals For a long time we used Super Nu-Thera from Kirkman's which has high levels of B6 vitamins and is highly recommended for autistic children. We did see some benefits for Joshua, but we recently switched to Sea Buddies and he is now getting B vitamin injections for supplementation.

Genetic Testing

One of the biggest breakthroughs for us though has been with genetic testing. We were skeptical about the value of genetic testing, but we have had the most dramatic results with interventions for Joshua since receiving his genetic results. Dr. Bradstreet recommended the Cardio Panel Patient Profile from Integrative Therapeutics, Inc. The most important piece of information gleaned from this test was the specific genetic mutations that inhibited Joshua's ability to detoxify. The best research we have seen on this subject is from Jill James in her paper titled "Impaired transsulfuration and oxidative stress in autistic children: Improvement with targeted nutritional intervention".

What the genetic test results and the information in this paper did was confirm that much of what we were already doing with dietary intervention was precisely what Joshua needed. The gist of the paper is that the ability of your body to control oxidative stress is dependent on a complex pathway that is in part controlled by the ability of your body to produce glutathione. We can not stress enough the importance of this paper because we saw by far the most dramatic improvement in Joshua's behavior and cognitive ability when we made the adjustments recommended by Jill James. According to James, decreased glutathione production may:

•  Reduce the body's ability to detoxify environmental toxicants and heavy metals

•  Reduce cysteine levels to the brain

•  Increase gut permeability and impaired immune system function

•  Reduce the ability to detoxify arsenic: increase oxidative damage

Joshua exhibited all of the above symptoms which were verified through testing. James researched indicated that administering trimethylglycine (TMG) and folinic acid (folate) increased glutathione production in autistic children. 

Joshua's Protocol

With Dr. Bradstreet's help, we finally settled on the following protocol:

• 1 gram of Life Extension TMG powder. (1 scoop 2x per day).

• 800 mcg Metagenics FolaPro (1/2 tablet 2x per day). FolaPro is a highly absorbable form of folate. We purchase this through Dr. Bradstreet.

• Methylcobalamin (B12) shots 3x per week. After trying different forms of B12, we switched to injections because Joshua was not absorbing enough B12 either orally or through a skin cream. We get the shots from a compounding pharmacy.

• 1/4 tsp. Wellness Products LipoCeutical Glutathione 2x per day. This must also be purchased through a physician. 

Improvements we have seen since starting this protocol:

• For the first time since starting the GFCF diet, Joshua suddenly became interested in many new foods and has finally started to gain weight.

• He has developed a more bubbly personality and is more aware of his surroundings.

• He is able to pick up skills much more quickly than before.

• He is starting to close the skills gap with his peers.

• He is now starting to engage in more pretend play.

• His social interaction has increased.

• He is now asking us where, what why and how questions which he never asked before.

• He is now using proper sentences and his speech is more intelligible.

• He is more creative and loves to sing.

• He follows directions much better than he used to.

• He can dress himself for the first time.

• He has been gradually breaking the rituals that are typical of autistic children.

For all the progress we saw over the past year of dietary interventions, we have seen an equal amount of progress with this new protocol in just a few short weeks. We are very excited about the results of this protocol and as a result, Joshua has been asked to participate in a new Jill James study to further research glutathione production. The Methionine Transsulfuration Pathway in which glutathione is produced is very complex and more research needs to be done in this area. The protocol we are using is designed to bypass the genetic defect that impairs the transsulfuration pathway, yet we know that this protocol is not the magic cure because we are aware of others who did not have such dramatic results. We hope that this research will benefit many more autistic children and that more funding will be provided to support this important research.

Therapy

Joshua now attends the Pinnacle Academy in Sarasota where he does ABA Therapy in a transitional kindergarten program. The ratio at Pinnacle is one teacher for every four students. We have seen so much improvement with the biological interventions combined with ABA that we believe he will be able to transition to a conventional kindergarten program within one year.

As we learn more about treatments and therapy, we will add them to the web site. We welcome your feedback on this article and would also love to hear from others who want to share your story. Feel free to email us at stories@biasd.net.

First day at the Pinnacle Academy	Pretend play at Kid City in Tampa, FL
So, whether you eat or drink, or whatever you do, do all to the glory of God. I Cor 10:31
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