I never thought I would be happy over seeing negative side effects, but apparently in the field of biomedical recoveries, even negative side effects are a positive thing. Last night I noticed that Skyler kept sticking his fingers in his mouth. That’s odd for a child that never accepted a pacifier or sucked his thumb as a baby. However, I remembered that mouthing objects and fingers was listed as a side effect for the methyl-B12 shots. After going back to research where I had read that, I was pleasantly surprised to read the following excerpt from Dr. James Neubrander’s Autism One Presentation, May 2005:
What one does see frequently with methyl-B is younger children touching or playing with their mouths, lips, tongue, and starting to bite on their shirts or shirtsleeves. Older children who are verbal state that their tongue tickles or that their tongue is buzzing. What is happening is that the children are showing a “positive negative” because the nerves in their mouths are starting to come back alive, receive signals, and tingle – a healing process. It is important to remember that treatment with the B12 family has been used for years to heal diabetic peripheral neuropathy. The long nerves to the hands usually take 6 to 9 months before starting to come back, while the even longer nerves to the legs typically take 9 to 15 months before they start to regenerate. It is at this point in time when patients first observe sensations returning to their hands or feet (a process medically called paresthesia or dysesthesia) . Their descriptions of what they are experiencing are similar to what children on the spectrum are observed to have or state they feel. Because the nerves to the mouth are the shortest peripheral nerves, this side effect can appear within weeks after initiating therapy, not months. As with diabetic peripheral neuropathy, this process indicates that there was a problem that has now entered the healing phase. In my experience, the tolerable side effect of mouthing objects usually diminishes significantly or resolves completely by the 2nd to 4th month but can occasionally last as long as 6 months.
So, yippee?? I never thought I would be happy to see Skyler sticking his fingers in his mouth, but I am ecstatic after reading that. It all makes perfect sense too, because Skyler’s previous speech therapist would often use a vibrating tool in his mouth to try to “awaken his nerves.” She also recommended we use a vibrating toothbrush for the same purpose. Skyler has always been a drooler, and the speech therapist explained that this was probably because the nerves in his mouth were not working properly. It also explained his difficulty with feeding and speech articulation problems. Apparently it is difficult to speak clearly when you can’t feel your tongue’s placement in your mouth. Makes perfect sense!!! Let’s wake up those nerves!!! This side effect came at a great time because my husband was just beginning to question the purpose of the shots.
Another side effect reared its head this week. We’ve started new digestive enzymes to help Skyler digest milk and wheat proteins. Since starting these, I’ve noticed that Skyler is a lot more hyper and is hand-flapping more during meals. Again, going back to research this, I found that hyperactivity and hand-flapping are signs that the enzymes are working properly. What happens is that autistic children often receive an opium-like “high” from gluten and casein, the proteins found in wheat and dairy products. The digestive enzymes cut off this “fix.” The children often go through withdrawal, much like drug addicts. The first night on this enzyme, Skyler woke up crying. He also tossed and turned and twitched all night long. Without the gluten and casein proteins working in his body to numb him to the world, he is suddenly very overwhelmed and alert – hence hyperactivity and self-stimming. Another reason this occurs is that enzymes cut off the food supply to any yeast or bacteria in the gut. As they are dying, they release neurotoxins that can temporarily cause hyperactivity and irritability. Poor babies have to endure “detox” while suffering from neurotoxins flooding their symptoms. However, these side effects are all signs that the digestive enzymes are working as they should, and the side effects should clear up within 3 to 4 weeks. After that, we should see great gains with little to no negatives. I look forward to that, and I am excited to see what’s coming.
So, I write today very happy and proud with my slightly hyper, finger-licking child – haha! I will keep everyone updated as the negative side effects start to fade and the positive side effects continue to grow. I am learning so much on this journey, and today is just another example of that. I love Skyler, and I thank God for sending him to teach me.