Note: I don’t use his name because he’s an adult and he prefers to stay anonymous. No worries kid… I got your back.
This is the story of my son’s long road to recovery. From what? At the time, I had no idea. When you see his list of diagnoses, it looks like alphabet soup. PANS, PANDAS, ARFID, POTS, MDD, OCD, CIRS, GAD, SPD…
There were also diagnoses of migraines, sleep apnea, toxic mold exposure, tonsillitis, celiac disease, osteopenia, encephalitis…
Autoimmune or Mental Health? Can’t it be both?
Most have some autoimmune elements, some were diagnosed with simple medical tests, many with complicated and expensive lab testing. All have some type of mental health component, either real or perceived by medical professionals. Once they saw the mental health diagnoses on the list, they would dial back. Or at the worst, blame the patient for manifesting his own medical issues. Finding the right providers at the right time was key, but now that’s getting ahead of the story…
As a little kid, my son was moody, fussy, a picky eater, and didn’t like to be left at daycare. Just the normal stuff, or so it seemed.
He was speech delayed but they said that having less than 30 words at three years old was okay because he was a boy, or an only child, or my favorite, “because I was a new mom.” Well, I had already been a mom for three years. Hardly new! He was also severely tongue-tied but I didn’t know it would be one piece of the puzzle contributing to food sensory issues later.
Rages can be a key symptom of PANDAS
Then the tantrums. The screaming. Many times a week and at times lasting for hours, especially if it was a rough day for him. At school he would keep it all in and on the surface, he seemed pretty normal to the staff. But once in a while, a teacher would call me asking what to do because he was in the corner of the classroom freaking out. This went on for years. I was exhausted. We tried psychotherapy, Occupational Therapy, exercise, and I never stopped researching.
When he was eight, he was deathly afraid of bathing. Sounds just like every other 8-year-old boy. They seem to suddenly become “allergic” to soap and water. No, I mean he would have panic attacks. Therapy didn’t make a difference. I never found anyone who could pinpoint what was really happening.
Half of the people with PANS have eating restrictions
Our most serious issues centered around food. He never ate “enough to keep a bird alive,” as my Mom would say. At his four-year well-child check-up, he was labeled as a picky eater. The Pedi said, “Just keep feeding him healthy food. Kids don’t starve themselves.” Hmm, he obviously hasn’t had any meals with my kid.
And it wasn’t that he wouldn’t eat. He wouldn’t eat certain things. Well, he wouldn’t eat most things. Or it had to be at certain times. Or from a certain plate. Or stopped eating it if the box changed color. They reassured me it was just being picky. Sounded like OCD to me?
Once a food dropped off the list, then it was never to be seen again. He would literally eat the same thing for lunch every day for two years. I later learned that this was called a “safe food” and the list of safe foods will only get smaller and not bigger without specialized treatment. Many friends and family voiced that he just needed more discipline. Ugh…
Then one day, that “safe food” food had a different taste or smell and he wouldn’t touch it again. Pizza rolls were the only thing he would have for dinner for a couple of years. Then one day he got a “bad one.” He wouldn’t touch them again.
He went on to eat those crescent rolls from a tube with a slice of cheese in each one for nearly a year. Then he was lab tested positive for Celiac Disease. No more crescent rolls. And he went from about 20 acceptable foods, which was somewhat doable, to 10 foods. Which was not.
Montessori, our bright spot
Just after a disastrous fourth grade, I moved him to a Montessori school where he had more freedom and his baseline was much calmer. He made many close friends. Teachers and parents told me all the time what a great kid he was. He transformed from a screaming kid who couldn’t handle the day-to-day into a kid with hopes and dreams!
Montessori is very sensory forgiving. Sensitive kids have the autonomy to work inside their own rigid behaviors instead of trying to fit into the governed rituals of a public classroom. Their threshold limit is rarely reached and easily managed. They learn to self-regulate. When they aren’t anxious all the time, then they start to have fun!
For those nearly three years, I am eternally grateful. Montessori was truly a gift for us and we both made lifelong friends at his school.
The End of the Honeymoon Period
One day near the end of 7th grade, still going to the same school, he woke with a migraine and fatigue so bad that he couldn’t stand. After a week of doctor appointments and a CT brain scan, all was normal except that his blood pressure was low and his heart rate was high.
Then he saw a neurologist and a cardiologist. The neurologist asked how many migraines he has a month. I said one. The doctor said, “That’s it?” I said it’s the same one for the past four months! Oh. So he started him on some supplements and migraine meds but nothing helped. He sent us to the cardiologist. Then we got the first real diagnosis, or so I thought.
POTS: Postural Orthostatic Tachycardia Syndrome
Basically, fancy words for the heart rate goes up and the blood pressure goes down when you stand. It’s a form of dysautonomia and it causes a person to not tolerate the standing position. It can be severe enough that it causes syncope (passing out). But according to this doctor, there is no known cause. But who knows? He wouldn’t do one single test.
None of the standard treatments that we tried for six months helped his migraine or POTS. It was suggested by the cardiologist that “he wasn’t getting better because he didn’t want to get better.” Without performing one single test except for vitals, his new treatment suggestion was for my 14-year-old son to volunteer and stop thinking about it.
Okay, you’re fired.
So at this point, I was on my own.
In the meantime, I was dealing with my own mystery health issues.
I had found Facebook groups to be my main source of information and support. There were people there with many of the same struggles we had. There were lots of stories, links to resources, and most important were discussions about providers. So many great providers and some not so great. These groups saved me so much time and money.
Starting with hormone groups and then autoimmune groups, I was finally pointed in a direction that led me to my own diagnosis of Lyme Disease. This story is for a different day, but it was in these Lyme groups where I found the new path for my son.
PANDAS and Mold
So at this point, I started hearing about PANDAS. It’s an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. It’s a condition that is related to a current or past infection of strep and causes inflammation of the brain.
PANDAS falls under another diagnosis of PANS, which is Pediatric Acute-onset Neuropsychiatric Syndrome. It is also infection based but the type of infections or toxic exposures can be anything. Many times it’s multiple things.
PANDAS was recognized by a small group of doctors over 20 years ago. Another newer diagnosis is autoimmune encephalitis and basal ganglia encephalitis. All these diagnoses can lead to physical and mental conditions that have very different treatments on their own.
Then I found a website that listed providers who treat this “controversial condition.”
The list was pretty slim for local providers. I also wanted him to be seen by a neuropsychiatrist to evaluate and hopefully dismiss the cardiologist’s conclusion of all this being in his head. I asked a friend if she knew any neuropsychiatrists because she was pretty connected in the area. She in fact had a name to give me. And… he just so happened to be on the extremely short list of PANDAS providers. I truly felt like this was a sign of hope!
So after an extensive set of evaluations and labs, he was diagnosed by this doctor with PANDAS and toxic mold exposure.
Huh? Okay, that one took me by surprise. With my own medical history and my son’s current problems, he said that even though both of our issues are completely different, they are all pointing together to toxic mold exposure. And since it was both of us with issues, then it was likely in our home.
So after labs confirm high levels of mycotoxins in my son’s body, we set out looking for the source.
Okay, so it’s time to explain who the “we” is. I was married then.
Yes, he was there and participated to the extent that he helped with things when needed, but he did not make any effort to help figure out what was going on, nor was proactive in assisting with mine or our son’s life in general. In fact, for most of our son’s life, he pushed him harder to try and “toughen him up.”
For all my writings on this site, I use “I” and not “We,” except in a few instances, even though he was physically there for most of it. This story is from my perspective since he wasn’t supportive except to provide assistance with finding the mold and fixing the home back up after it was remediated.
In case you were wondering 🙂
So “we” cut a hole in the wall of a room I suspected had issues. Yep, inside it was all black. Closed it back up and I tried to figure out what to do next.
Mold, Mold, Mold
So, there are many different opinions on how to handle mold, and I’m going to leave that for another post, maybe. Thinking about all we went through with mold has caused some trauma issues for me. There are many resources out there related to this that are much better than anything I could provide.
We remediated, got a little better, then got substantially worse. To the point, I felt like I was dying. My son’s doctor concluded that we didn’t get all the mold. We had more inspections and tests and found the motherload of mold in our house. This time, there was too much to stay in the house. It was a gut job. I knew for our health that we had to move out ASAP!
We bought a brand new and mold-free RV, parked it in the driveway, and my son and I moved in. I tossed nearly everything we owned (which was very therapeutic for me!). The house was remediated professionally for a second time, and it took nearly a year and a half for my husband to do the work to put it back together.
We built a brand new house and worked with the builder with the understanding that we were going to be his worst nightmare when it came to preventing mold. It worked out. I live in a small but modern home built with our special needs in mind.
I also learned two very important points. I will never, ever buy another fixer-upper and I will never like camping in an RV…
Health Improves but Mental Health Takes a Dive
His POTS seemed to improve on its own. He learned to golf and got on the team at school. He was doing better. Or so I thought.
It was during this time that I discovered my son had severe depression. I never felt like he was that depressed. Ever! But I needed his phone at the phone store. I took it and while waiting in line, I started to look through some of his texts. My heart sank.
Yes, I snooped in my kid’s phone (but technically it was my phone since I paid for it) and so should you!!!
The neuropsychiatrist started him on psych meds for the first time. It didn’t really do anything. He said that he needed IVIG which is the gold standard for PANDAS treatment in severe or non-responding cases.
My son was considered both.
Change is Hard
My son had been with this doctor for a total of four years. While he was the one who saved both of our lives, it was time to move on. And I should have done it sooner but I felt loyalty to this kind man who was compassionate and brilliant but at the same time, became ineffective. So after two years of trying to get IVIG ordered and approved, he and his office staff were not detail-oriented enough to complete the steps required by insurance.
So we moved on.
I reached out again to our Facebook groups to get recommendations. We had two to choose from. I picked the closest one which in hindsight should not have been a factor in the decision.
She was considered a top-level provider for PANDAS but was also learning other new things at that time and wanted to work on those instead. She wanted to revisit mold and do a different protocol and then work on PANDAS. My son did not tolerate some things in the treatment and we stalled out.
She wanted her assistant to also see him. Her assistant wanted to talk about the importance of nutrition and the benefits of intermittent fasting.
STOP!!!!
I asked her to move on because we were not going to discuss fasting with a kid who has an eating disorder.
Ahh, so that leads us to another condition that was yet to be diagnosed, ARFID.
ARFID: Avoidant Restrictive Food Intake Disorder
So in 2017, a group of PANDAS specialists got together and published a peer-reviewed paper that spelled out PANDAS/PANS. What it is and how you treat it. One of the three main criteria required for diagnosis (and you don’t have to have all three), is severe food restriction. It’s not more specific than that.
The diagnosis criteria of PANDAS/PANS only mentions food restrictions but does not mention ARFID and visa versa. There does seem to be a distinct relationship that has yet to have a formal connection. I really feel like this is a missing link!
For the last eight years, he has eaten only pizza for dinner. He literally ate the exact same brand of pizza for dinner and then one day, that brand was no longer available. It was hell trying to get a replacement. And so far we have changed the brand only three times.
February 2020, he had restricted it to a point that we were down to only one safe food.
Pizza.
One whole pizza a day. 1300 calories a day. Which is not enough for an 18-year-old who is tall enough to look down on the top of my head. But sometimes, I would find some of it in the trash. He was severely underweight at this point.
So I found a therapist who worked with people who have sensory issues. After the first session, she said that if pizza is the only thing he will eat, then he needs to eat at least two a day. So we started that and it helped a little. I was hoping that he would be successful in therapy and we would gain a few more foods.
But Then Coronavirus Hit
It was mid-March 2020 and while everyone was freaking out at empty toilet paper shelves, I was nearly in tears looking at an entire row of pizza freezers completely empty. I nearly had a panic attack in the frozen food aisle.
How was I going to feed my kid? I never felt so terrified.
Luckily for me, gluten-free pizza did not have the same demand as regular pizza. I was able to get enough with trips to multiple stores to keep at least one pizza a day going.
But it wasn’t enough. After four sessions, the therapist felt that he might need to be hospitalized. She referred us to an eating disorder physician.
At this point, I was joining eating disorder Facebook groups. But you knew that part of the story was coming. 🙂
I found the most amazing group of women I have ever had the pleasure of getting to know. This group was such an amazing resource and provided support when I needed it the most.
The new specialist admitted him to a local eating disorder facility. He was eventually sent out of state to a different one for a higher level of care.
In the end, he spent seven months in some type of inpatient/residential/partial hospitalization treatment in 2020. He was able to put on 50 pounds once they found the right approach!
He came home, but Houston, we still have a problem.
He was up to about 12 safe foods. One by one, they were starting to drop off.
With certain psych meds and working with a specialized dietitian who knows ARFID, he is currently stable.
The dietitian said that he is a complex case and that unless we are able to successfully treat PANDAS, then we won’t be able to move forward.
sigh…
So, three months after coming home, I was back looking for a new PANDAS doctor. Back to the PANDAS group. And the name that kept coming up was the second name on the list a couple of years back. The one that was further away.
Now, you can’t just make an appointment with any of these doctors. There are no walk-in hours. They are in high demand. There are waiting lists. Most of them are out of network. And this one required a referral from primary care.
So a few more months into it and we have finally started with him. IVIG is on the plan among other treatments. He seems like he knows his stuff and is willing to do what it takes with insurance.
He told us at the first appointment that IVIG was likely to be denied. Then he would do a peer to peer and an appeal.
Finding a doctor who knows the game and is willing to play is a big deal.
As of August 2021, this is where we are on the journey.
I am hopeful.
My son still has his plans for his future. But he’s a perfectionist. He doesn’t even want to start until he can do it well. So we are still in a holding pattern. So at the moment, no school. The doctor doesn’t want him in person and he wants to graduate from the high school that he went to for four years. Only a few classes left. He could do them online…
Everything is a struggle right now.
Okay kid, I get it…
