My husband and I both live and work in Phoenix, Az. Matt has been disabled with a back injury since 2007 and stays home with our 6 year old daughter Samara. I work three long days as an L.M.T. so I can spend the rest of our week taking Samara to her various therapies and homeschooling.
Samara was born, a healthy baby girl with no complications in September of 2011. At age 40 I had this little girl and went through all the normal transitions of going from a life where you do whatever you want, whenever you want, to one dictated by late nights, crying (both me and the baby), and feedings. She was a colicky baby, having difficulty with formula and breast milk. She was treated for acid reflux and that helped some but she was never quite on track with digestive health.
Six months into our transition our lives changed, her life changed, and our “normal” was changed forever. The day of her 6 months vaccinations landed us in the ER with an uncontrollable fever and seizure activity.
After that day Samara, who had been holding her own bottle and beginning to feed herself with a spoon was no longer using her hands for anything. Not a rattle, her bottle or utensils. Her babbling stopped, her eye contact was gone. We would put her in her jumper and she would tense her body and lift her legs until she was red faced and sweating. We later learned this was stimming. She entertained herself with spinning objects and was mostly interested in colorful videos with music over people.
We were put on a wait list for neurology and three months later she was diagnosed with acute encephalopathy and altered consciousness. We were told by the neurologist that some of her patients that had vaccine reactions such as this recover, and some go on to receive an autism diagnosis, an epilepsy diagnosis, or both and only time would tell what was in store for her. She hoped the best for our daughter, and our journey began.
On January 9th of 2014 at the age of 2 Samara was given the diagnosis of autism. Determined to recover my child I saw a naturopathic pediatrician, as well as an M.D. that specialized in biomedical intervention for children on the autism spectrum.
Samara has compounded MTHFR, which means she has one allele of gene mutations A1298C and one allele of C677T, and due to this she is supplemented with a compounded methylcobalamin cream. Without methylcobalamin her stimming goes from a part time activity to a full time job. She has leaky gut and she has a supplement that she takes before eating that a temporarily closes those junctions in the gut and without that supplement she struggles to speak a single word. She did not speak her first word until she was 3. We were recommended and tried many supplements, some having no effect, and some having disastrous effects that have taken months to recover.
Here is a list of what did not work:
- Selenium: caused her to desperately chew on her hands, objects and clothing. She was already prone to mouthing objects but the selenium greatly intensified this.
- ANY OTC vitamins of any brand. They all make her clumsy and silly.
- Aperture: a multivitamin designed for ASD children with MTHFR. She slept almost continuously for the two weeks she was on it, all language stopped. The doctor insisted she was coming down with a virus but she did not. Once she was off of it her energy immediately returned but her words were slurred and it took until NanoVite (2 years later) to recover her speech to where it was clear enough for strangers to understand her words.
- Kirkman TMG (trimethylglycine): This made her so hyper her heart was beating out of her chest and she spent the day running back in forth in our living room or running laps in the backyard. The naturopath said he, nor his colleagues, had ever seen this reaction to TMG.
- Bach Flower Essences Rescue Remedy: Caused her to lick her arms, and the windows.
- Probiotics: Samara already went back and forth with normal to hard stools. Probiotics, which we had her on for over a year made it worse, to the point that we had to use enemas.
- Culturelle for kids caused constipation
- Pro Bio Max 30B caused constipation
- Bioray Cytoflora: This caused what looked like a yeast die off reaction. Lots of drunk acting silliness, clumsiness, lack of focus, loss of language and intense uncomfortable stimming. The company stated it does not cause die off but pushes the bad bacteria out of the body alive and the stimming could be caused by the resulting itching in the genital area that this causes. In the end they agreed she should come off Cytoflora and start their Liver life product to detox the liver. We had similar results to that product with the addition of cycling emotions. We now have it diluted one drop to 8 oz of water and give her one teaspoon of that a day. We started that mid January 2018. The company was very helpful and we are still consulting with them. We may revisit using Cytoflora because I know her gut still needs healed.
- Evening Primrose Oil 500 mg 3 days per week: no noticeable differences.
- Zinc 30 mg : no noticeable differences.
- Vitamin D-3: no noticeable changes
- Curcumin: no noticeable changes
What did work:
- Restore by Restore4life.com was a life changer for her. She still cannot get words out without taking this supplement which temporarily closes the junctions in the gut. We did get some increased stimming and hyperactivitiy with this product. We started over from the full dose, introducing one drop twice a day. We waited for her to be free of side effects and then increased one drop each time. She now takes 1 tsp twice a day. This resolved all her constipation issues.
- Magnesium L-threonate : This was used along with restore while weaning her off Miralax . We then weaned her off the magnesium and her bowel movements are normal.
- Vancomycin and Nystatin: Samara had about one week out of every month where she didn’t sleep. She looked like she had wrestles leg syndrome but instead of her legs it was like she was trying to escape her entire body. She tested for an overgrowth of candida and clostridium difficile and the naturopath put her on 4 weeks of vancomycin and 6 weeks of nystatin. During the die off phase, those 6 weeks, she hardly slept at all. She would scream, laugh, cry, babble at the walls, climb me like a jungle gym and claw at my face. Fortunately, once that was done she slept like a baby, 8-10 hours a night, every night since.
- Removing casein from her diet was another life changer. We did this when she was about 19 months old. Prior to this it was literally like we did not exist. Two days without casein and she was leading us around. To this day if she consumes any amount of casein she becomes distant, stops language, is clumsy and acts like she is intoxicated.
- One thing that we did notice is that every summer when she ate watermelon, and I mean A LOT of watermelon, 1-2 large watermelons a day. She was having big bursts in expressive and receptive language and communication. After summer passed and watermelon left the stores, she regressed. Watermelon has high amounts of lycopene which are anti-inflammatory. It also is high in vitamin C and glutathione. We would get similar results after making orange smoothies on a regular basis, but she would soon tire of them and we couldn’t keep her drinking them year-round. Oranges of course are a good source of vitamin C.
So I started searching for a supplement that contained these nutrients and found the Living Spheres website with NanoVite Life. We started NanoVite before she stopped consuming the large quantities of watermelon. My hope was that with taking NanoVite she would not regress after she stopped the high consumption of watermelon. She continued to have improvements and I really realized how much better she was after I went back and watched our Easter video that was taken right before we started NanoVite. That first video represented the improvement we already had and that we were trying to maintain. I decided to do a similar activity as the Easter egg hunt to see side by side how much improvement she had made. NanoVite not only kept her from regressing, but she continued to improve. Her focus is so much better in therapy. She can now follow one and two step directions, attempts to interact with other children and while she still has some auditory processing issues and does some guessing, she seems to be understanding a great deal more of what we say to her.
Video Of Samara Before Starting NanoVite Life and RDI Therapy
Video Of Samara After Taking NanoVite:
I have MTHFR C677T and a vitamin D uptake inhibitor, so no matter how much over the counter vitamin D I take I still show low vitamin D in my blood tests. I just started taking NanoVite Life and their liposomal D3 two days ago and plan on continuing.
This is my personal testimonial and I was not compensated in any way. It’s my hope that this company continues to provide these supplements and that they can help other children like my daughter with ASD, MTHFR, or mitochondrial dysfunctions. It’s been a life changer for our whole family and gives us so much hope for her health and her future as we continue to look for ways to heal her body.