Hallucinations & Delusions - Searching for Causes

I was slicing an apple, a mid-day snack for the kids, when Daniel suddenly shrieked, flew out of his chair, catapulting himself against my legs nearly knocking me over. “Make him go away, Mommy”, he wailed.

“Tell who to go away”, I asked, gripping the center island regaining my balance. “The man with the newspaper! Tell him to go away!”, he cried, his voice quivering in terror.

“Daniel, it’s okay”, I said, kneeling next to him, pulling him into my arms. He’d have none of my comforting. “Make him go away! The man with the newspaper. Make him go away!”, Daniel screamed, peeking over my shoulder pointing towards the kitchen table. “He’s right there!”, he yelled, “right there with the newspaper! Can’t you see him standing there?”.

I always feel so woefully unprepared. As he pressed his shivering body against mine, my mind debated possible responses. Should I ignore what he was saying? Was it better to try to reason with him, explaining there was no man with a newspaper? I tried a neutral path.

“Mommy is here, Daniel. Sarah is at the table. Do you see her? And Beau is right over there. He’s looking at you, wagging his tail.” Distraction. It always works with parrots. Why does it have absolutely no effect on a delusional 4-year-old.

“He is pointing at my picture in a newspaper, Mommy! Look! Can’t you see him! He’s pointing at my picture in the newspaper and he is pointing at me! He’s telling me something bad! Make him go away!”, he screamed from behind me where he was attempting to hide.

I stood up, keeping Daniel tucked safely behind me, deciding the Big Production was the shortest path to calm. “I’ll save you!”, I proclaimed, shaking my finger at the empty space he’d been pointing towards, boldly commanding “Go away, bad man!”, I said. “Go away and don’t ever come back!”.

Daniel flew into my arms sobbing, “He’s gone. You’re the best Mommy I ever had”.

This experience coincided with a Court TV trial I had been watching (not in his presence!) involving Pastor Ray Hemphill, charged with the death of an 8-year-old Autistic child held down as church members prayed for the release of demons. “For you are a superstitious people”, the Lord proclaimed in the Old Testament. Some things, over thousands of years, do stay the same.

For a number of months, the hallucinations and delusions came fast and furious. There were some not-so-scary ones thrown into the mix. He seemed to warehouse friends in every room, forgetting those in one room, as easily as one throws a light switch when walking into an adjoining room, his cheerful little voice greeting his “new pals”, “Oh, hi there! So that’s where you are. Do you want to play?”.

Other hallucinations/delusions involved swirling rainbows shimmering on the walls, pulsating lights complete with siren-shrill noises, “fairy-dust” falling from his bedroom ceiling, and “bad boys” in his room who cut a hole in his pants (all scissors have been removed and hidden). The most upsetting to him was the day he heard our dog barking. The dog, however, was away for the day being groomed. After slamming his hands over his ears, repeatedly begging me to tell the dog to “be quiet!”, he then ran to the deck door, insisting our dog was barking from outside. Pointing frantically, he tearfully insisting, “he’s right there! Why can’t you see him. He’s right there, Mommy!”.

One particularly memorable night he awoke terrified, his blood-curdling screams ripping me out of my bed, chilling me to the bone. I raced down the hall, meeting him halfway. He frantically tugged at my nightgown, insisting I had to “come take every single thing out of my room! Right now! It’s all going to come alive and eat me!”. he hid behind me as we entered his room, popping out occasionally to point a quivering finger at an offending object, accusing it of heinous crimes, then ducking back behind, hanging onto my legs.

My gut instinct told me there was a “trigger” for the behavior. Some of his delusional behavior almost seemed as if he was trying to escape from the world, often triggered by a stressful event. If the hair stylist uses a hair clippers on Daniel’s head, he’ll cognitively check out for many hours. I can count on him having several types of delusional experiences involving visual and auditory processing. He’ll complain about bright flashing lights and loud noises, for example. But there were other times when a “trigger” wasn’t apparent to me such as his ingesting sugar or RD-40 red food coloring.

I started journaling other concerning behaviors and issues:

1. Why has Daniel never had a solid bowel movement.
2. Why, at the age of 11 or 12 months, did he have screaming nightmares that could raise the dead, resulting in him attempting to rip off half his face, his fingernails raking long bloody tracks down his delicate cheeks.
3. Why does Daniel have red, inflammed ears.
4. Why does Daniel have black circles under his eyes.
5. Why does Daniel have pain in his feet, legs and arms which at times sends him flying off a chair or the couch, gripping the painful body part, leaping around the room begging for help.
6. Why does Daniel have bright red patches on his skin after eating.
7. Why does Daniel have stomach aches after eating, without a discernable obvious pattern of specific foods causing the pain?
8. Why does Daniel reject food, days on end, including water, and then go on eating binges, to the point he’ll “steal” and hoarde food in his bedroom.

Answers are non-existent in the Autism spectrum. Speculation reigns supreme. Doctors are reported to be overwhelmed. Specialists, like neurologists, are booking appointments 6-8 months out. No one has ever been able to answer a single question. In talking with a wide range of “professionals”, I began to understand that to get to an acceptible answer, I had to first make a determination as to which path I would take. I had a choice between the pseudo-science psychology realm (yes, I know, I’m showing bias), or in the not-as-scientific-as-I’d-like medical realm. (yes, I know, bias again).

One psychology “answer” was Reactive Attachment Disorder – also known as RAD – its basic premise being that his behavior (nightmares, hallucinations, delusional thinking, etc.) stemmed from inadequate stimulation or possible abuse in his first few months in life. Given the fact we didn’t adopt him until 11 months of age, he supposedly has an even greater risk of developing attachment difficulties which manifest as abherrent behavior. There. Did that sound psycho-babble enough? Several “doctors” said that given enough love, nurturing and time, he would get back “on track” developmentally which would reduce the “behavioral” issues.

The good Lord has given mother’s an intuition for a good purpose, and this was one of those times it was sounding the alarms as if there were an 11-story blaze. Cross off the psychology route.

The Neurologist was the first to offer tests which included an MRI and EEG, neither a simple task for a frightened little boy and mother. Both tests, in addition to a large battery of blood panels revealed nothing. No tumors, no seizures, no epileptic fits. The general meaningless answer is usually something like, “Well, you know, many Autistic children have a delicate GI system. That could explain the bowel movements. And, well, you know, when he’s older, but not until he’s six years of age, there are meds that can control the delusional behavior”. The simplistic answer in regards to his hallucinations and delusions has been, “It is called childhood schizophrenia, after all, and now you can see the reason why”.

Like others, his suggestion was that when Daniel became 6 or 7 years of age, we could discuss a variety of drugs that could help control his behavior. It wasn’t his behavior that I was questioning. It was the source of his behavior for which I was striving to find an answer. I am sick of doctors and their drug approach.

I’ve queried all his Occupational Therapists and teachers. Their answers are just as unsatisfying. Either they shrug, reporting they’ve never seen the delusional behaviors, or they suggest that he’s “exceptionally bright, has a very active imagination, and have you considered, perhaps, he is pulling your leg to get attention”. I find that to be offensive.

It ain’t good enough. None of it. I was told early on that I would have to become a strong advocate for him. It has turned out that means not only watching out for him in an educational setting (which has been the easy part), but more so, taking on a whole new hobby – that of becoming a medical and nutritional specialist.

Having suffered through my own childhood battle with “penicillin-induced hallucinations”, something I “blogged” a few weeks ago, and not being taken seriously by adults, there is a steel-hard conviction within me, reaching to the very depth of my heart and soul, that I will listen to what he is trying to tell me. Shrugging shoulders and drugs be damned.

I turned next to other mothers of Autistic children. Many of their answers were equally as unsatisfying, many of them taking the approach that removing all wheat and dairy from the diet was absolutely necessary. Some left me feeling very uncomfortable, intimating that to feed a child dairy and wheat was akin to abuse. None of them, however, could positively tell me their child’s behavior had improved given their heroic efforts. Hours of internet research yielded no scientific credible results showing that GFCF (gluten-free casein-free) was of any benefit, other than for those children who battled fungal and yeast infections.

Determined, I continued to follow one lead after another. Finally, there was one mother I connected with a number of months ago who said, “tell me everything….”. What a blessing that woman was.

Her son, now 12, displayed many similar behaviors when he was Daniel’s age. She explained a condition called leaky gut syndrome and the opiate effect that is created when food particles pass through the intestinal lining into the bloodstream. Finally, I had a clue as to where to begin looking for answers. For the first time since our adoption of Daniel, this theory started to make the most sense.

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