MAY 2019: A year on from our last Dientamoeba Fragilis diagnosis & we’re back to square one. I noticed in my 7 year old increasing aggression, anger, irritability, night terrors (thankfully unlike last year these were only occasional), teeth grinding & gas (from the most non-farty kid you’ll ever meet).
To me these symptoms were immediately a warning bell that the parasite had made its’ way back into my son’s body. We went to the Doctor & despite me being able to see his vague unwillingness to believe that this parasite was causing symptoms (many Doctors believe it is asymptomatic), he ordered the stool sample to be tested.
As my gut told me, the results came back positive with Dientamoeba Fragilis. I went back to see another Doctor in the same practise who told me that they don’t treat DF & gave me a referral to a Gastroenterologist. I tried to look at the positive side of this – that maybe that Gastro would discover something that had not been found when we did rounds of tests including blood, urine, stool, ultrasound & even x-ray for celiac or anything that could be causing what could only really be called a dodgy gut when he was two. I called to make an Appointment & was told it would be a 2 & a half month wait. I couldn’t wait this long. I called another Doctor Surgery & spoke to the receptionist, sent through the test results & asked if any of the Doctors would treat DF. She called me back the next day: all three Doctors declined to treat the parasite. So I called back the first Doctor I saw, & convinced him I needed to see him again. Success! I convinced him to treat my son (mind you, this was the FIFTH Doctor who i attempted to ask to treat it). In the midst of this, my son ‘celebrated’ his 8th Birthday with no party as his behaviour was so temperamental as a result of DF which supposedly causes no symptoms.
Getting him to take any form of medicine is a form of torture. I wouldn’t wish it on my worst enemy. 8ml of antibiotics, twice a day was a 2 hour process – no exaggeration. he gagged, sniffed it, would only take 1ml at a time then need a whole glass of water to wash it down.
I had forgotten how intense the parasite die-off period was: for my son it was about 72 hours of discomfort & pain which I wish i could have taken away for him. He was asking to go to bed early each night, he was sleeping 12 hours a night, & hardly ate for 48 hours. This culminated in a morning where he was able to get out of bed (day 5 of antibiotics) but then could only manage to sit on the kitchen floor. He was pale, quiet & complained of bad stomach pains. A few hours later he had bad diarrhoea & was weak & quiet all day. That evening he was in bed by 6pm. I’m pleased to report the next day he was a new child! We haven’t yet had re-testing to see if DF has exited his body but judging by the change of personality overnight, I would be confident it has.
We are now following up with a Gastroenterologist – fate intervened & I tried calling back, knowing the wait would be at least a few months & there had been a cancellation meaning a 2 week wait only.
I have written this piece as I feel there is the potential for a lot of children to be experiencing similar symptoms & for them to be diagnosed as behavioural, or, like my experience a year ago when a Doctor told me I needed to do a “positive parenting course” & it was nothing to do with the parasite she had diagnosed him with. “Gut feelings” are a real thing (read the book by Giulia Enders – it’s fab). I’m not claiming to have any medical expertise. I don’t have any.
I have nothing but respect for Doctors & the incredible role they play. I’ve never met anyone who has worked harder than all the Doctors I know, to get through the years of study, exams, night shifts & finally their specialty. I just feel there is a big gap in our system to be receptive to things that may have changed even if it’s not in their books, along with findings of Functional Medicine