For me and for most of the moms I know, after we take in the fact that our child has special needs, we set off on a journey to find the root cause of our child’s challenges and sometimes illnesses. Even when we think we have an answer, it is not the final answer. Things are always in flux and we are always learning something new. Information posted a few years ago may already be disproven or at the least improved upon. Even though we know CB has a genetic difference, genetic variance, genetic mutation, whatever you want to call it, we know that he exhibits a myriad of symptoms that may or may not be 100% related to this genetic variance. He could exhibit some behaviors because the genetic variance makes his body more susceptible to other infections, illnesses, or other difficulties.
Our latest work up results included blood, urine, and stool. We did this as we were considering seeing a pediatric gastrointologist. This pediatric gastrointologist wanted an extensive work up including blood, urine, and stool before he will see your child. His visits are also 100% out of pocket and if he has to do a scope, a good portion is not covered by insurance. Since it was time to do CB’s usual blood work, we added in the extra tests. The good news is that we do not feel we need to move forward with a visit to the pediatric gastrointologist based off the results of the work up. (sigh of relief). The concerning news is that CB’s iron is still low and his IgA levels have fallen even lower. His wbc count is low but nothing else on the CBC. His zinc and vitamin D look fine but we supplement those. The other interesting finding is that his stool still contains d. fragilis. This is the same parasite identified in his stool from another lab almost a year ago. We treated the parasite with humaworm. Actually, the entire family took humaworm. We felt his symptoms had improved afterwards. Since we did not test again, I don’t know if it actually cured it and he was reinfected or it never fully cured it.
After researching d. fragilis more, it seems like it can affect iron levels and cause IBS symptoms, diarrhea, and leaky gut. Some have mentioned they had issues with gluten and/or dairy after getting the parasite. It has not fully been classified as pathogenic or non-pathogenic, but there are numerous studies identifying clients with related symptoms. The general theory is to not treat the issue unless the client exhibits symptoms. Well, it is hard to say if CB is exhibiting symptoms as there is little information out there about it. We started his restricted diet due to the work up, and prior to that he had definite loose stools most of his life. To me, he is exhibiting symptoms: 1) leaky gut requiring restricted diet and 2) low iron, zinc, and vitamin (without supplementation even though his diet should supply him what he needs). I can’t say if these are because of the parasite or b/c his immune system is compromised b/c of the genetic variance and the parasite is not actually doing anything harmful to his body or that his leaky gut is due to both.
At this point, we are getting stool tests for the entire family. HB has had loose stools on and off for a year or so. Olem is gluten-sensitive. We thought it wouldn’t hurt to test the whole family and then make a decision for treatment. Right now, we are considering moving forward with the antibiotic iodoquinol for 20 days. We have more research to do and then need to convince CB’s ped that this is the appropriate treatment as the general default antiobiotic here in the US is flagyl. We do not want to give that to CB as it is extremely harsh on the body and kills all the good and bad bacteria while remaining mostly ineffective at treating d. fragilis. If we move forward with the antibiotic for all the family members affected, then we will have to first determine our plan to help ensure reinfection does not occur and that his gut is properly nourished during treatment and following treatment.
Here are some of the best resources for d. fragilis.
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3862407/
- https://www.cdc.gov/parasites/dientamoeba/
- http://www.badbugs.org/