Last week, I joined an online group for parents whose kids have low muscle tone. Some kids have been diagnosed (genetic defects, cerebral palsy, down syndrome, and some pretty rare conditions),but many are like Wallace with no clear cause of the hypotonia. Low muscle tone has a cause and cannot be outgrown. A person can learn to adapt and to use their body as best they can but hypotonia is not a diagnosis, it’s a symptom.
I was drawn into a post about supplementing with trace minerals. The parent posted a video of their child sitting up for four minutes unassisted. It had never happened before and the baby was past the usual age for getting in and out of sitting independently, past the age for crawling. I was definitely intrigued!
As I delved into the research that one mom, Ida Briggs, has done, I was overwhelmed with guilt and sadness that I hadn’t heard of this before when Wallace was at a crucial stage for development and nutrition. The case studies read like miracle snake oil gimics: premature babies catching up to average age milestones and growth charts in a matter of months, children who could only walk with assistance running without walkers, and cerebral palsy diagnoses being revoked.
But, it is all real and backed by science! Unfortunately, the science is for farm animals, pets, and just a few mentions in medical textbooks. For six years, Ida Briggs has been trying to get anyone with credentials to do an accredited, double blind study but no one will take her seriously. Doctors brush her off and say that her children, and the over 200 cases of parent reports, are lucky, thanks for letting them know, but they don’t have time to research it. She has attempted every avenue possible and recently gave a presentation to the state of Michigan.
So, why aren’t people jumping on this treatment? Well, self preservation and money. No one wants to fund a study for a nutritional supplement that would get rid of most of their patients and empty the NICUs. Ida analyzed and presented the financial data as to how it would save the state money on EI services, Medicaid costs, and medical devices by just meeting a child’s nutritional needs. The information is there but still no one will listen.
It’s turning into a grassroots word of mouth movement but it isn’t without its naysayers. Parents are skeptical of Ida’s research and motives but I was immediately comfortable because of her thoroughness and the fact that she is gaining nothing by doing this. She is spending her time and money to work on this cause with no kickbacks from supplement companies or any organizations.
Here is a link to some slightly outdated videos Ida made with the basic information and her story. There are four parts and the link is for the first one.
Here is a link to the presentation that she gave in Michigan in Setember 2015. It’s long and aimed at a specific audience but it is totally worth it.
A link to the Preemie Growth Project.
The big presentation has a detailed breakdown of which children are at risk for trace mineral deficiency. These include premature babies, babies who were diagnosed failure to thrive (FTT), babies whose mothers were premature, babies whose mothers have nutrional and absorption issues (Crohn’s, celiac, and candida to name a few), and babies who did not receive adequate prenatal care.
Though Wallace was born at 42 weeks and 5 days, I have Celiac and absorption issues, was very tiny myself (17lbs at one year and probably could have been diagnosed FTT), and Wallace was diagnosed FTT and low weight gain. He has low muscle tone in his whole body, had feeding and eating issues (I think he still does), and has been delayed on all gross motor milestones.
Last Friday, I picked up some trace minerals from a local health food store. It wasn’t one of the brands other people had mentioned but I didn’t want to wait to order online (and I like shopping local). I purchased Now brand colloidal minerals with raspberry flavor. I started Wallace with 3Tbs and am taking 2Tbs myself. We switched to taking it in the morning because it can give children a burst of energy and some people had issues with babies not being able to sleep.
According to Ida’s research, these children need a higher dose because they are making up for a deficit as well as a need for more for their growing bodies. It is called a bolus dose and anything they don’t need will exit their bodies in their urine as it is all water soluable. Makes sense to me.
It can take weeks to see the effects, or it can take a matter of days. Of course, we all start looking for changes right away! So far, Wallace’s appetite has picked up, he is pooping more (sometimes two big poops a day), he has more energy and stamina, and he is putting together bigger sentences and abstract thoughts. He is also getting his underpants and pants on and pulled up by himself, which he was struggling with for a long time. Two weeks ago, he could manage once around the block or a short walk outside at work. Yesterday, we had a morning walk that was multiple blocks and back and then later walked to the park, played, and walked all the way back. It was impressive!
I will write again and update on how Wallace is doing. If anyone has any questions about the information in Ida’s presentation or want more information on which brands of supplements, just ask. I didn’t want to discuss brands here beyond stating what we are taking.