Caroline was born on June 2, 2006 and was a happy, healthy, playful baby... until 6 months of age when she received the DTaP, IPV/OPV, Hep B, PCV7 and a Flu shot all at her 6 month well child visit. After that, she began exhibiting a shaking behavior any time her excitement or sensations became more than she could process.
Other than that, she was still fairly typical. She began to babble and was developing a few words... Ma-ma, da-da...the words that touch a parent's heart. However, after 12 months of age (and the MMR), she lost them and did not gain any others. She became much more interested in electronics than people. It was subtle, but noticeable. Her sensory processing difficulties increased.
Her pediatrician suggested she have an EEG, which led to a meeting with a neurologist, Dr. Swisher at Children’s Memorial at 17 months of age. He diagnosed her with Sensory Processing Disorder and Verbal Apraxia. She was not talking at all at that time. We were unaware of the turn our lives would soon take.
We began Speech and Occupational Therapy at 18 months. She progressed very slowly and still had no words until age 2 ½ (30 months) at which time she could say one syllable consonant-vowel words, when prompted.
Something she developed early on, was remarkable intelligence and memory. She knew all the colors, shapes, letters and numbers before age 2 and never ceased to amaze her therapists with her knowledge, even in the absence of language. These skills gave us hope that soon she would overcome the language barrier. But the progress was very, very slow and her sensory issues were mounting. She was becoming completely intolerant of transitions, defensive of many textures (including most foods) and her social anxiety was debilitating. We knew we needed to look beyond therapy.
The Biomedical Journey
When she was 33 months old, she was diagnosed with autism and we began to research and learn about underlying medical issues that could be causing her symptoms. It was the beginning of our biomedical journey as we cautiously gave her a supplement called DMG (Dimethylglycine). It was amazing! She was considerably more calm and many of the tantrums over transitions and being in public places were gone. It was evident that we needed to look into other treatments.
At 35 months, we knew about the GFCF diet, but it was daunting and we were skeptical. So, we started digestive enzymes (DPP-IV, to help her digest gluten and casein) with every meal and snack. She became more focused & calmer, but she still needed prompting for almost every word with more than 1 syllable. By 38 months we decided it would be worth it to give the diet a try. She responded very well, more language and more focus on tasks. At 39 months she was also soy free, 40 months, low sugar… this one made a big difference in controlling gut and yeast issues and even cleared her persistent eczema.
At age 3 ½ we saw Dr. John Hicks. We tested her for deficiencies and began methyl b-12 (vitamin) injections. Immediately upon starting them the words came easier for her. It truly was inspirational to watch happen nearly overnight.
He also suggested to give her Cod Liver Oil, rather than the Children's DHA that we were giving her. It made a big difference in her overall disposition and ability to tolerate change.
In an attempt to heal her gut (rather than just avoid foods she couldn’t digest), we began the Specific Carbohydrate Diet (SCD/GAPS) in February of 2010.
The diet is completely grainless (limited to meat, fruits, vegetables and eggs). The results we noticed within days were more focus and attention, and improvement of GI issues. It may be one of the most difficult interventions we've tried, but the results make it a necessity for her.
With Dr. Hicks, we worked on treating yeast naturally, but it wasn't strong enough. So many children with sensory and language issues have systemic yeast problems and antifungals can lift the fog. Wanting to more aggressively attack yeast, in March 2010, we saw a GI specialist, Dr. Charles Dumont. He prescribed Diflucan (antifungal) and within a day, she very quickly began putting 3 words together, had noticeably increased focus and decreased sensory issues.
In April 2010, we visited True Health Medical Center and learned that there was so, so much more we could to help her heal. We performed more testing and added Flagyl (antibiotic) to fight bad bacteria in her gut. As many of her OCD behaviors lessened, she became more typical. Although upon stopping it, several behaviors slowly returned... because of this we had PANDAS on our radar.
Also, we learned that Caroline's body can't overcome the viruses from the vaccines, as she is still fighting them. They're causing inflammation in her brain and gut, which lead to many of her issues. In an attempt to help her fight the viruses, we tried Low Dose Naltrexone (LDN) cream to help modulate her immune system.
It was a social miracle. After a week on LDN, Caroline was much more genuinely interested in people… saying hello to strangers, sharing her favorite toys, instructing others how to do things etc… for ONE day. Then the yeast flared and she regressed. It took about 2-3 weeks for her to return to her pre-LDN state. We also tried Vancomycin which resulted in diarrhea for 7 weeks. Luckily, her behavior wasn’t greatly affected, but her gut clearly was. After just 1 day back on Flagyl, her gut was back to normal.
We have also cleaned up her environment and keep her from toxins as much as possible. You name it, we filter it... including her bathwater. Everything from organic foods to lawncare are critical when you have a child with a poor functioning detox system.
Just after her 4th birthday, June 2010, she taught herself to read. That and the other traits she exhibits clearly pointed us toward an additional diagnosis of hyperlexia.
In August 2010 we began mild Hyperbaric Oxygen Therapy (HBOT), to supply more oxygen to her brain (helping build connections), improve mitochondrial function, decrease oxidative stress and further heal her gut. At about 12 hours of treatment, we noticed she was becoming calmer, happier, more tolerant. Her language was clearly improved and her tantrums and social anxiety were disappearing. The grinding, clenching and pained look on her face no longer existed.
With hyperbaric, we needed to work diligently on suppressing yeast. When yeast returns, so do the lack of focus, teeth grinding, night waking (5 hours at a time) and drunken laughing. We increased antifungals even more to suppress it, but it’s a delicate balance. The yeast can make everything spiral out of control and mask gains from a treatment.
in September 2010, we tried Imunovir, another immune modulator and her sleep cycles were again disrupted (similar to LDN - also an immune system enhancer). She was wide awake for 3-6 straight hours in the middle of the night. We took her off it and her sleep returned to normal. We put her back on at less than half the dose and she again woke for 5 hours two nights in a row. She was missing too much school and too much sleep... that was the end of Imunovir.
We will be revisiting antivirals after we work more on the heavy metals -- which are also wreaking havoc on her gut and brain.
Detox / Chelation
From a urine porphyrins test we learned that she has elevated levels of mercury and several other metals. To remove them, in October 2010, we began low dose chelation with DMPS. The first round went extremely well. The DMPS is given every 8 hours for 3 consecutive days. It binds heavy metals and removes them from the organs. She especially needs this to fight the metals in her gut which allow yeast and bacteria to thrive. We chelate every weekend and have also added Alpha Lipoic Acid (ALA) which removes metals from the brain. We're following the Andy Cutler chelation protocol that requires very small doses of chelator every 3 hours, around the clock to minimize possible effects of redistribution of metals.
With chelation we're noticing more tolerance, improved awareness and focus, more social engagement and significant language gains (sentences coming much easier) and . We have also been able to take her off of Flagyl. We replaced it with Berberine complex, which seems to be keeping the bacteria under control.
Chelation is a long process which also demands persistent yeast control. Most children need 100-300 rounds of ALA to remove the mercury from their brain. As the rounds progress, we have seen many more tremendous gains... better coordination, increased understanding of the world around her, a sense of humor, more body strength and decreased sensory defensiveness.
We stumbled upon adrenal fatigue as a cause of many ASD children's meltdowns, inability to control emotions and night waking. With Adrenal Cortex Extract (to raise her low cortisol during the day) and Phosphatidyl Serine (to lower it at night) we've kept her fairly meltdown free for about 8 months. Please read our post "The Meltdown to end all Meltdowns" for more on Adrenals.
In March 2011, we visited a Homeopath, Miranda Castro. She was recommended to us by a friend who had a son who Miranda recovered from autism. We read Amy Lansky's book "Impossible Cure" and understood the "like cures like" concept of homeopathy, however, it's hard to imagine that it can actually work. After studying all of Caroline's history and unique characteristics, Miranda prescribed a remedy. The remedy chosen was Belladonna. After the first dose, Caroline was remarkably improved... her eye contact and use of her language were undeniably better and she was much calmer than usual. It seemed too good to be true. After 3 days, the remedy's effects were diminished, but upon repeated dosing we've noticed the same results. We're currently working with Miranda to determine the ideal dosing schedule and consider other remedies as well.
Slow and Steady
As we headed toward round 40 of chelation, we continued to see gains with each round and noted that it's consistently been our "heaviest hitter" treatment to date. We only wish we would've started sooner. We added DMSA (instead of DMPS) once a month to work on removing lead and seeing even more gains across the board and most surprisingly in her ability to generate ideas in both communication and play.
We've tried a few additional immune system enhancers: Transfer Factors specifically for MMR and other vaccines by Chisolm labs and Proboost Thymic Protein A. From both of them, we saw some gains, but again, after 1-2 weeks her yeast flared and we had to stop. This tells us that we have not chelated long enough to work on the viruses... so we will continue to wait.
In May, we gave Caroline a "deep acting" homeopathic remedy and are seeing very nice improvements. Everyone around her has noticed her increased use of language, better eye contact and that it seems as if the veil that was keeping her in her own world is being lifted.
We revisited HBOT which seemed to help her process more quickly, but in conjunction with chelation it caused too much yeast, resulting in decreased eye contact, increased stimming and scripting. Upon removing it, she's much happier. Doing too many things at once is always tempting, but often doesn't result in greater overall gains. Again we wait.
A New Chapter: P.A.N.D.A.S.
In August, 2011, Caroline was sick with a cold and a fever. After that, her OCD behaviors rapidly escalated. Since that can be a symptom of PANDAS and we knew in the past that antibiotics decreased her OCD, I knew to pursue it. We began working with a PANDAS specialist and are seeing enormous gains in engagement, eye contact, mood, lessening of OCD / Rigiditiy, from Ibuprofen, Amoxicillin and Prednisone (5 day trial). We began considering IVIG treatment as well. For more on PANDAS, please see her PANDAS Page.
November 2011, brought many changes. We began working with PierreFontaine (homeopath) and her remedy brought some much needed social gains.. unfortunately they did not last. None of the homeopathic remedies we have used have had any lasting effects.
When she began drinking Camel milk, he changes in her engagement, attention and language were dramatic.
She was previously unable to go off antibiotics (because OCD and tics swiftly returned) but we were encouraged to try a natural protocol and to our surprise, it's been able to keep her largely symptom free and improve her sleep. IVIG has moved to the backburner as a treatment while we see how much healing we can achieve naturally. As we enter the new year, she's doing better than ever!
The first half of 2012 brought Caroline many gains. Continuing with Camel milk and adding supplements such as carnosine and seriphos greatly increased her calmness and attention.
However, it was treating Thyroid in the beginning of the summer that brought us some of the most remarkable, directly related improvements we've seen.
She is much more present, in the moment and has wonderful referencing (seeking people's approval before she acts). She has also needed far less adrenal cortex extract - because being hypothyroid is hard on the adrenals. We are still working on finding the optimal dosage.
Like so many things, we really wish we had looked into thyroid sooner. It's estimated that 80% of children with autism have thyroid issues, so we recommend that everyone consider it for their own children.
The end of 2012 and into 2013 we added and removed several supplements. Get Smart brought many gains, we continued to treat parasites, and we removed many antioxidants and all probiotics which helped with the few remaining PANDAS symptoms. We've learned that she sometimes improves when we remove supplements that once clearly helped, so it's critical to continue to test whether your child continues to need supplements and whether the doses should be adjusted.
................................................................................................................ To date, Caroline's most remarkable gains have come from treating yeast, methyl b-12 injections, the specific carbohydrate diet, hyperbaric oxygen treatments, chelation (we are at round 71), camel milk and treating thyroid.
Through all of it, therapy is essential and has helped Caroline tremendously, but only in conjunction with biomedical treatments. Every time she demonstrates large gains in skills -- which are noticed at therapy sessions and/or school, it is precisely at the time we have started a biomedical treatment. When she plateaus with a treatment, no new skills have come until we try the next one. Fortunately, she's capable of rising to each new challenge with a smile.