Hilly Road

I wanted to share with you how we began our biomedical journey to heal big brother. Back in 2009, at the time it was just the beginning of some major advancements in the biomedical world and healing developmental disorders. Many “basics” are still gold standard, but there are wonderful new treatments available which is great news for anyone wanting to enrich their child’s life. I learned everything from scratch and was consumed with research, research, research. We had hits and some misses, but it was a learning experience and we absolutely would not be where we are without trying nearly everything. I hope this road map will help you find a starting point, feel less overwhelmed, and also understand just how many options there are to discover. Let’s begin:

Enlist a great Doctor. This is two-fold. You need a pediatrician who understands you, your child, and your stance on issues like vaccines or the fact that you want to think out of the box. The allopathic medical box is that there is no treatment (other than ABA) and no cure. Stay FAR, FAR away from those Doctors and do all you can to network and find the good ones. Along with a basic Doc you need a Homeopath or DAN doctor. Sometimes they can double as the same. If you really get lucky you can find a Pediatrician who is also a DAN and qualifies for insurance coverage (Dr. Bob Sears). Your biggest cost will be the initial consult with the DAN Doctor or Homeopath. Insurance rarely covers this as they are not doing anything to support pharmaceutical interests and therefor not support insurance companies. It is a twisted world we live in. I certainly recommend the doctors we have visited, but it is best to get referrals from people who have seen a difference. Avoid the one-trick ponies and the big “centers” that claim to be all in one.

Within this area, it was crucial that we found a Neurologist who would give us the diagnosis we needed to get insurance coverage. We went thru about four different actual diagnosis codes for big brother in order to make our case with the insurance companies that we needed speech, OT, PT and Social therapy. Our Neurologist was not covered by our insurance but that out of pocket cost made up for itself in areas where we did not have to pay for therapy because he wrote a prescription for anything that we wanted. Often the best Neurologists are not contracted with insurance companies so they can give the patient what is needed, not mandated.

This is a list of  some initial tests that might be recommended upon your first visit to a DAN or Homeopath:

  • Urine Peptides, Urine Organic Acid
  • Comprehensive Stool Analysis
  • Genomics
  • Recommended Medical Tests
  • Complete Viral panel including – Lyme
  • Toxic Metals / Red Blood Cell Elements
  • Vitamin Panel (could be part of another test)
  • Essential Fatty Acids RBC test (blood)
  • Lymphocyte Subsets TH1/TH2
  • Food Allergy Panel (IgG and IgE)
  • Plasma Sulfate & Plasma Cysteine
  • Liver & Kidney Functions (from any lab)
  • Immunoglobin profiles (depends on your doctor)
  • Thyroid Study (from any lab) • Ammonia Levels (from any lab)
  • Blood clotting profiles (from any lab)
  • Anti Mylen Basic Protein
  • MAJOR TESTS: 24 hour EEG, MRI, Spect Scan (after age 6) and Landau Klefner/Fragile X, Rhetts Syndrome

After our initial visit to the DAN Doctor we went back to the Pediatrician and Neurologist and requested they order the above tests so that it would be covered by insurance. It would not have been covered thru the DAN Doctor. We made it a priority to create an open and honest relationship with all three so that they understood our needs and wishes. The Neurologist learned from the DAN and the DAN learned from the Homeopath and the Pediatrician learned from them all! One happy little family working together to heal our son.

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Next Step: The “Diet”

I really dislike the way that dietary interventions are often referred to as “special diets”. First, it implies that your child is “special” and in need of something that is out of the norm. It can also make the child feel like, A: they have a weight issue or, B: they are different or weird. The fact is that eating nutritiously is as much an intervention as traditional speech therapy. It heals your child from the inside out. It also allows your child to adopt a healthy lifestyle that hopefully they will continue as they get older and make their own choices. Eating clean, organic and “whole foods” was the single most important intervention we did for our children. You do not need a Doctor or a prescription to do it. When funds are tight and there is no way to afford special Doctors or supplements you CAN make a difference in your child by a dietary intervention alone. It is the creme de la creme. But it is all on you, the parent. It is all or nothing. How motivated are you to help your child recover?

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Reports of improvement in Children on Dietary Interventions

“You are what you eat”

In the developmental delayed world this saying has more truth than people fail to realize. It all begins with a “leaky gut”. The brain to gut connection is the single most important feature of the human body. This is especially true of our kids. Imagine how sick your brain would feel if your gut could never process nutrients and was unable to deliver them to the brain. Most DAN Doctors or Homeopaths have a difficult time treating patients that do not comply 100% with a dietary intervention.

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There are generally four main options to choose from. Don’t worry the Doctor will guide you to the best fit.

We began with GFCFSF and witnessed huge gains in the first few months. It was no cake walk at the start. Big brother was self-limiting his foods at the time to basically yogurt (a sign that your child needs to be on a dietary intervention). After about 2 days of not eating much he slowly opened up to new foods. That was HUGE for us. It was slow and steady, but paid off big time. Over the last few years we have also done GAPS. This is the way to go for permanent healing of the gut. L and M are now able to tolerate ALL foods without any reaction. We choose to eat “whole foods” and steer clear of dyes, sugar, processed foods and pesticides. Basically, we have taken all of the great qualities of each intervention listed above and made our own version. Yes, I make my own nut flours and do not use pre-packaged mixes. So when I say nothing processed that includes even “gluten free” goodies at the store.

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Treatments

  • Metal Detoxification (chelation)
  • Traditional therapy (ABA, floortime, social, speech, OT, PT)
  • Anti-fungal & anti-virals Interventions
  • Gastro assessment and treatments
  • Assessment & Treatment for Metabolic Disorders
  • Secretin (topical & IV)
  • Nutritional Therapies (Supplements) & Diet(s)
  • Nasal or Injectable MB-12
  • Oral, topical, nebulized & Push/IV (GO IN THIS ORDER) Vitamin C, Glutathione (and NAC)
  • Hyperbaric Oxygen Treatments (HBOT)
  • Growth Factor and Trans. Factors
  • IV & Oral Immunoglobin therapies
  • Bio & Neurofeedback
  • Somatic & Listening Therapies (Tomatis, AIT, Berard)
  • Craniosacral & Chiropractic Therapies
  • Pharmacology (last step please)

We did not do all of these treatments. It is very easy to go on a wild goose chase when you are trying to heal your child. For us, we apply three main criteria when choosing a treatment.

  1. Pray that God will reveal to us a clear path
  2. Is there independent research to support the treatment?
  3. Does it fit into our lifestyle, beliefs and schedule?

By applying these we feel that everything has worked in some capacity. We keep the ones that show the most healing as we move along. We needed a clear picture and order of treatments. We avoided doing “all at once” as it would be impossible to know what is actually working or not if there is no separation. The (basic) order in which we began:

15 months 

Behavioral therapy, speech therapy, occupational therapy, physical therapy

18 Months

Dietary Intervention, first DAN visit – Biomedical (B-12, Supplements, Glutathione), continuation of above therapies

24 months

Continuation of all of the above, Neurofeedback

30-36 months

Chiropractor, Cranio-sacral therapy, Dietary intervention, B-12 and Glutathione, social and speech therapy

Age 3 1/2 

Homeopathic Doctor (Chelation and other issues he diagnosed with the Gut), Chiropractor and Dietary Intervention, social and speech classes, auditory processing therapy

Age 4 1/2 – 5LOST DIAGNOSIS 

Homeopathic Doctor (Chelation and Behavioral issues), Essential Oils, GAPS, Neurofeedback, social classes

Current (age 5 1/2)

Homeopathy (every 2-3 months for maintenance), clean eating, Essential Oils, Neurofeedback

No traditional or behavioral therapy, No Diagnosis! 

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Troubleshooting

Bumps in the road will occur, and we have been thru many of them in the last 5 years. We have learned that there are always solutions based on the symptom. However, this goes back to point number one: find a good Doctor. In our case an amazing Homeopath who can pinpoint and heal any dilemma. Some signs that there is a problem:

  • Too much sugar / yeast issues / parasites
  • Gluten/casein OR FORBIDDEN FOOD Infraction
  • Phenol overload
  • Allergy/intolerance to a food or foods
  • Dyes / natural flavors
  • The supplements don’t work for your child’s chemistry
  • Dark Circle / Bruises / Sleeping issues
  • Botton line: Poop has all the clues, whether it be constipation or diarrhea. These kids have major poop issues and it is NOT okay. It can be healed, naturally. Try to avoid the harmful cycle of miralax or other meds that pediatricians will push.

My husband and I were talking the other day about how we feel like we are finally in a place of true healing. And it feels great! I literally feel like I just got out of jail (not that I know what that actually feels like). We know exactly what works for our boys and we stick to it. We would never close the door on future treatments, but for now, we are in a good place. Glory be to God for that. I think of one of my favorite verses that I held onto in this journey:

“He knows where I am going and when he tests me I will come out as pure GOLD.” Job 23:10

 


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