What it’s like traveling with my chronically ill son

Nov 9, 2019

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One February day earlier this year, my happy-go-lucky 4-year-old with no medical history seemed to have an internal switch flipped and we were faced with episodes of rage and anger rivaling anything I’d ever seen. Fast forward a few months. After countless doctors’ appointments, thousands and thousands of dollars, and hours of reading and research, we stumbled upon a diagnosis of PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

Basically, my son gets strep but has no immune-system capabilities to fight it. Instead of a sore throat and fever, his brain is slowly inflamed to the point of psychotic outbursts. It is indeed troubling and there is no real treatment except consistent antibiotics (not good in the long run), dietary changes, infusions to try to boost his immune system and hope that he grows out of it.

All that said, he seems to do better in environments outside of our house and he loves a good airplane ride and hotel stay. He also loves going to his grandparents’ houses and is genuinely excited every time we head to the airport. Our trips are much needed respites from daily home life, which is honestly a struggle six days of the week.

Based on his condition, we have to take several precautions when traveling to try to delay any symptoms and prepare as much as we can for the chance that things go downhill — which they can rapidly.

Smooth transitions

We have to begin telling my son days in advance that a trip is coming up. We have to role-play what is going to happen, when it is going to happen and what he is going to see. Everything from, “It will still be dark outside when we leave,” to going through the entire airport process of parking in the remote lot, busing to the terminal, clearing “the machine” (security), catching the train and then hanging at the gate. We will talk about the process constantly and prep him to be able to handle what is going to occur.

Of course, the most difficult part is that travel doesn’t always go as planned. We have to prep him for things that may not go in the exact order we said, which is another constant conversation. Talking about everything repeatedly and avoiding surprises is the easiest way to prevent a sudden meltdown as PANDAS patients cannot handle transitions very well.

Pick flights and seats carefully

We aren’t going to fly red-eyes and we aren’t taking 5 a.m. departures. We are not connecting and we aren’t flying overseas. I choose our flight times and routes very carefully to minimize the time in the air and airport, not because he doesn’t like it but because we just need to limit our exposure to potential problem times.

I’ve written about why I love to sit in the back row of Southwest airplanes and that philosophy extends to every flight and airline we take. We will be in the back row or as far back as we can be on every flight. This way I shield as many of our fellow passengers as possible in case of an outburst, and flight attendants and the lavatory are right next to us in case we need an extra set of hands to watch my daughter for just a minute while we deal with our son in private. These seats are also routine to him and routine is good.

Alert flight attendants

Depending on the kind of week and day he is having, when we board I’ll probably grab the rear working flight attendant and give him or her a very quick synopsis that my son is sick and may have an outburst, which may be extreme. I want them to know that it, at least, is expected and that he will be OK. I also like them to advocate for me to fellow passengers, in case of an outburst, that the child is sick and not ill-behaved. So far, we’ve never had an in-air situation because of our prep, and all flight attendants have been extremely understanding and willing to do whatever they can to help. For that I am grateful.

Prep food for the road

My son operates on an anti-inflammatory diet which isn’t always easy for travel or the places we are going. Snacks are a necessity for kids who are going to fly (because of tarmac delays) and we aren’t able to just run into a Hudson News and find something for him to eat. Holiday meals are stressful (we flew to my parents’ for Easter; a big family meal is a no-go for our boy); maybe there isn’t a specialty or adequate grocery store where we are traveling, which will have what we need. This all-meals prepping from the time we leave the house until we return has to be on our mind and a plan enacted.

Pick hotels carefully

We need space for ourselves and space for our neighbors. While he generally does very well and symptoms are down when we travel to new environments, we want to be prepared in case the worst comes out. This means a tiny hotel room with neighbors on either side is not a good idea. It’s also not a good idea in case I need to take his baby sister out of harm’s way and into another room to watch cartoons while mom deals with the boy. This is why Hyatt Globalist status and getting a suite for almost nothing every single stay is such a big deal for us as a traveling family.

If there isn’t an avenue to a large room, Airbnb or VRBO have to be options for us to get the space we need. All that said, I hope his continued pattern of doing great on the road continues. The kid does love a good hotel.

The unknown: Traveling with CBD oil

Eight months of worsening symptoms and no progress using traditional medical treatments has led us to all kinds of treatments to try to help our son. For months, other PANDAS patients’ parents have told us that CBD oil has helped their children tremendously. We met with a licensed naturopathic doctor from whom I could get direct answers to my skepticism. More reading has led us to a decision to — most likely — give our son CBD/CBG oils to try to repress some of the symptoms.

It has led me to wonder what we will do if it does have a positive impact and we have to travel with it. CDB oil with any THC is illegal here in Georgia, so does that mean if we are carrying oil with THC one day because it helps my son and TSA pulls it out, we will be arrested on the spot? Is crossing state lines with this a federal offense? I have done no research at this point, but this is yet another aspect we will have to explore if we are going to continue to travel.

Bottom line

I hope there are two things you pick up from this post. First, an awareness of the PANDAS condition, which is much more prevalent than we thought. Unfortunately, there is an extreme lack of literature and studies on the disease. Take a quick second to Google it and you will be fascinated. We have run across so many teachers, nurses, counselors and health care professionals this year who have never heard of it. They go and read about it and then tell us they are sure they have had students and patients in the past who probably had this.

Second, have compassion and understanding for what you may see in an airport, airplane or hotel. The child having a fit may not have a behavior problem, they may have a medical problem. I assure you the parents are doing the absolute best they can. If my son has three consecutive days without having a meltdown because we have traveled to Orlando, something that could only be achieved by traveling and risking a short episode in public, then that is what we are going to do.

I promise I don’t want this to happen any more than you do and I certainly don’t want my wife in tears because fellow passengers roll their eyes, give us snarling looks or make snide comments. Be compassionate and empathetic toward your fellow travelers; you have no idea what they’re going through.

Featured image courtesy David Roark.

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