If you or your child is having gastrointestinal issues that aren’t responding to the treatment your doctor recommends, please pay careful attention:
We have four children, ages 23, 19, 10 & 9. When our 10-year old son was seven, he experienced an abrupt change to his stooling habits; specifically, he suddenly began soiling his pants, and it was black and smelled toxic. My husband and I didn’t even know what to make of it, for he had been potty trained normally like the rest, and he was otherwise normal behaviorally. He also experienced episodes of acute abdominal pain and vomiting. I thought he might be constipated and gave him some chewable Pedialax, which had no effect.
I took him to our family doctor, whom we had selected from a list of providers based on proximity to our home; since he was in family practice, I selected him to be our family’s doctor, and I never had any complaints with him prior to this. When I told him what was going on with our son though, he said it was constipation, and suggested I give him MiraLAX.
So I did, and it affected no change other than making our son very nauseous. We continued with this for a time, and of course all the while, the warning label on the box had me worried: “do not use for more than seven days”, “not recommended for use in children”, “if this product fails to produce a bowel movement or causes cramps and pain, discontinue use”. Those types of things, and I wondered if I should continue to give it.
So, we went back to the doctor, who very breezily explained to me that our son had “childhood fecal retention disorder”, that he was “holding in his poop” because he had suddenly become “afraid to poop”, and he directed me to give our son a dose of MiraLAX in the morning and a dose of DulcoLAX at night. This diagnosis really irked me, and I just really knew that it was wrong. But I went ahead and did what the doctor ordered…again, with seemingly no effect, no change, no improvement.
I would bring our son back to the doctor several times; sometimes, I would take him to the urgent care facility, and no one could tell me what to do. The suggested remedies became more invasive as I tried suppositories and then enemas, following the doctors’ instructions — nothing worked. The soiling continued, requiring our son to wear pull-up pants every day. This basically went on for nearly three years, and when I questioned it, the doctor continued to ascribe a behavioral cause for our son’s symptoms. I, too, was told to increase the amount of MiraLAX, and that he might have to take it for the rest of his life.
My research indicated that the symptom of black stools is either because of an iron-rich diet, bismuth medications, or bleeding in the small bowel; it also indicated humans cannot exert any control over the small bowel. We asked our son to describe what was going on; of course, since the topic was all about poop, he was embarrassed and hesitant to talk about it…but also because it was difficult for him to find the words to accurately explain what he felt was going on inside of him…after all, he’s still a child, not Doogie Howser, MD.
My son and I are/were very close, I loved him so much, we had such a good relationship, we had a very close bond. All I wanted for our son was for him to feel better and to go back to how he had been before this suddenly happened to him. By now, he was getting ready to enter the fifth grade, and after that it’s middle school, and I just wanted him to be free of this health complaint. We agreed that the next time he had acute abdominal pain, we would go to the emergency room at the hospital so they could look at it with all their diagnostic machines and whatnot and figure out once and for all what was wrong and fix it.
When it happened again, I took him to the local “Childrens Hospital.” They asked, “what brought you here today” and as I began to provide the history and describe my son’s symptoms they began to look at me funny…quizzical and skeptical. They decided to admit him, and that was the beginning of 12 days in Hell. They ignored everything I said, putting him on a clear liquid diet and literally pumping Go-Lytely into him to “clean him out.” He got so sick, vomiting ceaselessly, and still no poop.
Occasionally, they would ask me what *had* worked, and I told them a “milk and molasses” enema. They jumped on it, and administered a rapid succession of enemas, and my son was in so much pain and so sick, and nothing worked to “clean him out”, there was still so much stool inside of him according to the x-rays. They decided to do a manual disimpaction, believing that a lump of hard stool must be blocking things up…but that was not the case either. They subjected him to an endoscopy that was just…I don’t know. It was so *aggressive* when they couldn’t get it to go down past this one section of his stomach, they just kept trying to force it through, and it didn’t work. My son got so sick as they poke and prodded him everywhere in every way, trying to force the laxatives down, even though I had already explained that none of the oral laxatives had any effect.
My son lost so much weight; the staff kept urging me to leave the hospital for some “me time” and I didn’t want to leave his side, I was just so afraid for him. The hospital assigned a “social worker” to us, a do-do bird who shadowed us everywhere we went. I did not fee free to take my son from the hospital. In the time we were there, my son was placed under general anesthesia four times. When after everything they did my son continued to “not respond to therapy as we had anticipated” they said he was going to be there for at least five more days and ordered the placement of a PICC line for direct nutrition.
This PICC line went straight to his heart. They placed in the after noon of day 10. In the early morning hours of day 11 a nurse came in to flush out the line, and my son cried that it hurt. The nurse rolled her eyes, commenting on his “anxiety” — she put in a call to the doctor, who gave her the go-ahead to give our son a dose of Ativan to calm him. And then she pushed the Ativan in and nearly killed him; she induced congestive heart failure, and my son almost died right in front of my face, and I will never forget the sight, I will never forget the moment.
I cried out that she had overdosed him and she denied that she had, and another nurse led me out of the room and told me if I didn’t be quiet and calm down they would prevent me from re-entering the room. I assured them that I was perfectly calm and that if my son was going to die, I was going to be sure to watch him go and take note of everything I saw. I spent the next several hours holding my son, so afraid; after three hours of babbling and seizures he finally fell asleep.
In the morning, those quacks walked into the room all smiles, remarking on how great our son looked, and that they felt it was just a stomach bug and as soon as he passed some stool he’d be ready to be discharged!! I couldn’t believe it. After some time, he passed a little orange-ish turd, and they shoved the discharge papers in my face to sign…but I recognized the smell, linked it to a smell I had detected on a stray kitten’s poop…we had taken in this little stray kitten three years earlier…
Long story short, my research led me to wonder if my son had something called Helicobacter Heilmannii — look it up, its a bacteria you can catch from your cat or your dog, and it causes all kinds of gastrointestinal disorder. It is treatable with a two-to-three week regimen of antibiotics and stomach acid reducers…but left untreated, it causes lymphoma of the gastric mucosa. I asked our doctor to test our son for it, and the test came back positive, and I was elated. Finally, a real diagnosis!
But the hospital had already started a horrible, nightmare train a’rollin…the doctors there claimed I had “medically neglected” my son, that if only I had given my son MiraLAX as the doctor had recommended, my son would never have had to come to the hospital at all; they reported me to child protection services and told them I had Munchausen’s Syndrome by Proxy, and that I had deliberately sickened my son because I enjoyed the secondary attention I got from the doctors from my son’s illness. CPS came and took our 10 year old son and our 9 year old daughter away. Two months after his removal, our son suddenly began stooling normally again, and everyone pointed to it like, “see, all we had to do was take him away from his mom, and he got better.” But it was because of the antibiotics he had just finished taking before they removed him from our care…
And that was eight long months ago…we get one four-hour visit with our kids every month, and two phone calls per week…the dependency and neglect system is so corrupt and evil…CPS told my husband they would return the kids to him if he divorced me…we’ve been married 24 years…we miss our kids so much…the hospital and CPS have destroyed my life, stolen my from me and my heart and my whole world are broken.