Our Entire PANDAS Journey, Tics And All
Author: Kathy D.
Word Count: 4,418
Questions Received: 14
Testimonial ID: 10466-OR
Scientific Studies: 5
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There I was, sitting in Disney's Hollywood Studios parking lot, tears streaming down my face on the phone with the hotel that I was cancelling a stay with. Clearly we needed to go home, which was at least a 16-hour drive.
The gal on the other end of the line said, "Sure we can cancel your reservation. I'm so sorry that you had to go to the emergency room." I could barely get out the words, "Thank you."
I hung up the phone and glanced back at my son and daughter. My son (Jesse) just stared out the window, moving his head back and forth for stimulation, and my daughter (Grace) stared at me with wide eyes. She softly said to me, "Mom, I don't like to see you cry."
I started the car and sat there for a minute thinking, "How did I... how did we... get here?"
Jesse was diagnosed with severe infantile autism at the age of 18 months. We did the normal traditional therapies with little success. When he was almost 4 we found a program called RDI, and, when we started using some of the strategies, we saw progress that we have not seen with anything else we had tried.
It was exciting to watch as my son's engagement increased. While addressing his neurological development, there was always a piece of the puzzle that was medical related. We gave him enzymes for digestion, probiotics for his gut, vitamins and minerals, and amino acids.
Everything had its place in helping. In addition to RDI as his main therapy, we did movement and reflex work with various therapies.
Fast forward 6 years... and the progress was remarkable. We had meaningful conversations together, and he would share with me his thoughts. We would laugh at jokes together and as a family. Our lives were no longer impacted by autism.
One thing that nagged at me was that he never got sick. Literally up until the age of 11, he only had two colds that lasted a day. With one of them he actually had a fever. He had never thrown up, had the stomach virus, etc. I mean, yes, I walked around saying, "Look how healthy he is! He never gets anything."
When Jesse was 7, I decided to get trained and certified in Relationship Development Intervention, which is the program we used with him. I wanted to help other families and help their children when the word autism enters the house and parks itself within the family dynamics.
My training took 18 months, and I was on my way to starting a career in a field that I had been thrown into because of my own journey. This is what I wanted: to be able to pass on what I have learned.
All was running smoothly, and I adore each and every family that became my clients. To this day, their kids are my kids too as we try and unravel together the complexities of their obstacles.
When I started with a family and got to know them and their child or children, I would think to myself, "Oh yes, I remember this!" Little did I know that "this" was not a distant memory... but that Jesse was about to take me into another journey kicking and screaming.
I don't remember the day, but I remember thinking to myself in the fall of 2011 that something was different. Jesse seemed out of focus and just not himself. A few days later my daughter complained of a sore throat. That sore throat would not go away, so I took her to the doctor where it was confirmed that she had strep throat. Jesse was with us, so they tested him too. Negative for him.
The second day of antibiotics for Grace was when Jesse started making this gurgling noise within his throat. I would glance over at him, and he would be looking through the side of his eyes... something I literally had not seen in years! He was not really sharing communication with me any longer unless it was just for me to get him something.
What happened to my boy? The next day or two, to the best of my memory, in the morning he started barking like a dog occasionally. I looked at him when he did it and would ask, "What are you doing?" with this confused look on my face. He would reply with, "What am I doing?" We would get into this discussion about him barking, and he would just stare at me in this confused state.
The barking got worse. Within a week he was barking every few minutes and seemingly had no idea that he was doing it. I raised my voice at him, tried to talk to him about stopping this phase he was going through, etc. It was only when a friend and colleague commented that it sounded like PANDAS that I realized this was not something to take lightly.
What is PANDAS? A great video here will explain:
So like any mom, I googled PANDAS and read for two days all I could get my hands on. I decided to do an experiment that I do not recommend, but, since this is my story, I am telling it. My daughter still had her antibiotic and had plenty left, so I started treating my son with the same antibiotic. Keep in mind that his strep culture had come out negative.
Within a day the barking was diminishing, and I was relieved. There was enough antibiotic for both kids to finish the round.
"Phew!" I thought. "Thank goodness I took care of that!" My son, after 4 days on the antibiotic, stopped all barking and seemed much more with it. He was back to sort of his old self.
I was extremely happy that it was gone and, realizing he must have had strep throat, was glad that I had come across the information. With the reading I did, however, something I read was tucked in the back of my mind. Each time strep comes back, it comes back stronger. Okay yes, I read that, but I thought, "Well, maybe this won't be an issue."
Fast forward 6 months, and my son started barking again, out of the blue. That night I asked my daughter how her throat was, and she told me, "You know, it's starting to hurt." This time, however, my son's throat culture came back as strep, as did my daughter's. So I received my handy-dandy antibiotic and was sent on my way.
A few months later (now remember that this is the child who I can count on one hand how many times he has been sick), all of a sudden he keeps getting strep throat. Barking, inattention, and lack of focus began, and I thought, "Okay, whatever. I'll go get him more antibiotic." However, I simply hated giving him so much antibiotic, especially since prior to his first strep infection the year before he had never even had antibiotics.
This time, though, I was educated as much as I could be at the time on PANDAS, and I was going to have a chat with the doctor about what was going on. My daughter was not complaining of a sore throat, so I called the doctor and thought that surely, when I explained to him all that I knew and had concluded, he would willingly give me whatever I needed.
Obviously that did not happen. What did happen was that I argued with this one doctor at the practice (there are numerous doctors) as he kept telling me, "There is no such thing as PANDAS."
As I continued to go rounds with him, it was established that I would get my son's blood work done to show him the high strep titers since, when I told him it is common that strep does not show in the throat but instead in the basal ganglia nerve cells in the back of the brain, he had given a chuckle over the phone. I was absolutely furious and made an appointment to come in for a throat culture, knowing full well, no matter what the results were, that my son was having an immune response to the strep virus.
I had an appointment the next day, so my husband took Jesse in because I was afraid for what I would do to this doctor face to face. Turns out that my husband saw a different doctor. He explained the symptoms and said that we wanted to get a throat culture. And since Jesse was pretty full blown with barking tics for this visit, she turned to my husband and said, "I think he may have PANDAS."
I nearly lost my mind when he texted me this information but was so thankful that God had led this doctor to us. She said, "Oh yes, we need to give him antibiotic right away." "Alright," I thought, "Round three dealing with PANDAS."
So I wondered, "How long does this keep going?" This child, who was never sick in the past, now all of a sudden in two years has multiple strep infections? What the heck was going on!? More importantly -- from what I had read -- how do I stop this if the antibiotic stops working!?
It would not take long for me to not only be pondering this question but to be dealing with it head on. The antibiotic that Jesse received -- though it had helped him -- when he was done he did not bounce back like the other times. And every so often I would hear a bark.
I thought, "Well, maybe it will just go away on its own. Maybe he is just so used to doing it that it is like a habit." I did as much as I could to justify why it was okay that some of this was still around. Unfortunately for me, I did not realize the magnitude of this situation.
At the same time, we were switching health insurance carriers, and there was a span of 2 months where our pediatrician was waiting for approval with our new carrier. "It's not so bad," I said to myself. I started looking up natural remedies, but all of them did not really make any significant change.
It was November when I finally got to the doctor again. I told her that it never really went away, and now it seems to be coming back full force. Another round of antibiotics was prescribed. After that round -- while he was bark free on it -- a few days after finishing the dose, the barking would begin again. She let me know that he still has antibiotics in his system and to give it two weeks.
Now we were in December. Our family is big with celebrating Christmas. Christmas is the holiday of all holidays. We carefully plan all the activities we will be doing: the light shows, live nativities, music shows, and walk-through presentations. For this Christmas (2013), as we stood in line waiting to see shows, Jesse was sitting amongst us, ticing (flinching his body) and barking. This was two weeks after being on antibiotics.
Then we made plans to go to Walt Disney World to ring in the New Year. The tics were getting worse. Maybe he needed another round of antibiotics. My heart was breaking as he continued to ask, "What am I doing?" when we all would comment to him out of sheer water torture! I wondered when I was going to be able to go out places with him again, go back to church, etc.
I of course called the doctor and expressed my concern. The doctor reluctantly agreed, and off I went for yet another round. What does that make? I lost count! I however had peace of mind. "Okay, all this antibiotic has got to make a difference, especially right before I go away for two weeks." He would finish the dose 3 days before we were to leave. Perfect, right? WRONG!
The very next day when the dose was done, the tics came back. I called the doctor, and she told me, "Don't worry about it. There is still antibiotic in his system for the next 5 days. It will come down." "Well great," I thought, "I'll be on the way to Disney World by then."
She did tell me that she could prescribe Clonidine for him in case the tics did not stop when we were at Disney World. Perhaps that would give relief. I sighed and thought, "Okay, it is what it is. I'll just start packing. It will be okay."
Packed up and ready to go, by now the tics and barking were coming back full force. I thought that, maybe if I just ignored it, they would go away. It is a two-day drive to Disney World, and I had our trip all mapped out. It was going to be quite the adventure. Looking back, it certainly was!
Packed up in our SUV, we were on the road. Every hour I would have to say, "Jesse, enough! Please stop!" I just could not take it. If I did not say it, then Grace would definitely chime in.
At our first hotel stop, I decided that maybe I should try the medication on him. I mean... that had been a pretty rough ride. Thinking back now, I think I had just been hoping one morning to wake up from it all. We all went to sleep, were in bed, and the noises stopped. Ahh! Peace and quiet.
Bright and early the next day, I was up and about, and Jesse was waking up. He was lying in bed, and Grace and I were sitting there enjoying the quiet. It took about 20 minutes upon waking up for the tics to start.
Exhausted, I got ready and packed up for the next round of travel. We would get to Disney World that evening and would stay close by, checking in to our final destination the next day. That destination was the Art of Animation Resort. We were so excited.
When we reached Florida, it was clear that I had decided that I would give him the medication to see if it would help. It brought new meaning to the saying, "I have one last nerve, and you are on it."
We checked into Disney World the day before New Year's Eve. We were there celebrating Jesse's birthday. He was turning 13... the big teenager. I knew there would be great surprises in store because my bestie is also a Disney travel agent, and she always takes such good care of every detail.
Off we went to one of the parks. It was a day that I just tried to make it through. Somehow I was still grasping onto the thought that tomorrow, which was New Year's Eve, would somehow be better and that things would be okay. Not knowing what was coming, I had thought that this day was pretty rough. We got through it, went to dinner, and went to bed early knowing that we needed to get to the Magic Kingdom bright and early, lest we be shut out of the park (a.k.a. filled to capacity).
It had been interesting getting into the park. Entering the park literally had taken two hours! Now we were sitting in Crystal Palace while Jesse was pretty out of it, Grace was enjoying her breakfast, and I was contemplating how I was going to make it through the day. As we were sitting at the table, Winnie the Pooh and Tigger came bouncing over to our table. Jesse was able to hang in there.
After we were done, the waitress came over to our table and sang happy birthday to Jesse, which he barely acknowledged (as in did not know what was happening). As she was almost done with her song, she looked at me as if to give me the cupcake, and she had a look on her face like, "You do know your kid is not paying any attention to me, right?" Then she handed me the cupcake.
She walked away, and I just sat there for a moment like, "Oh yeah, I remember this!" In the first few years of the autism diagnosis, this was how most interactions went. I was numb, and the second thing that came to my mind was, "Wow, I had forgotten that feeling that I got from that LOOK."
I pulled myself together. After all, we were in Disney World on New Year's Eve. There is no time for anything else but keeping it together! The excitement of being in the most magical place on earth helped for sure. And we made it through the day and night! We ended up watching the fireworks from the castle so that Jesse's ticing would not bother anyone else. And the sheer amount of people there made it impossible to get close anyway unless we had reserved a spot hours beforehand.
About 1:00 AM it was clear that we were done. Unfortunately, so was everyone else. We literally waited in line for the boat to take us back to the transportation center (where my car was) for two hours. Yes, 3:00 AM we got back to the car.
For two hours in a mob of people, Jesse was barking at the top of his lungs every minute or so. And we were sandwiched around people. No one said anything. Clearly they knew we were all struggling. But the occasional pity look came my way, and my daughter would occasionally say to me, "Mom, please make him stop!"
I will not bore you with the entire "vacation", and I use that word lightly. But let's just say that every breakfast, lunch, and dinner that the birthday surprise was set up was salt being rubbed into the wound.
Finally midweek, I took Jesse to the emergency room there in Florida. We walked in, and I told the gal that Jesse was sick and needed antibiotics. My doctor could not be reached that week, plus I don't think she would have given it anyway because she was telling me that he had had too much. And she also did not want him dependent on antibiotics.
When we finally saw the nurse and doctor, I explained that Jesse had PANDAS. If they could just give me azithromycin, I would follow up with my doctor in New Jersey. As they both looked at me, the doctor said, "What's PANDAS? Is it related to Tourette's? He has Tourette's, right?"
My reply was, "No, he does not have Tourette's. He was fine until he got strep last year." They both said, "Wow, really!?" So I politely told them to Google it later. Meanwhile if they could just give me the antibiotics, then I could be on my way to another dinner -- this time with Cinderella -- that would be fabulous.
Two hours later I was heading to the Grand Floridian. I hadn't eaten all day, and it was pouring rain. But it was a nice dinner, and I was definitely getting used to the awkward birthday cupcake! This time, though, the waitress asked me where she wanted me to place it after Jesse was unable to acknowledge her. I told her, "I am not sure. Why don't we ask him?" Then I made Jesse engage and respond!
The last two days, even with starting the antibiotics, we were limited. It would take the medicine a few days to kick in, and so walking around with a barking child was something that I had had quite enough of. Our second to last day was Hollywood Studios, and it was clear that I needed to cancel our future plans. So that was the phone call. With tears I said to both kids, "Okay, tomorrow is Epcot Center, and then we are done. Our last attempt of a ride was in Epcot for test track.
Then we were headed home. I had my son up front with me because my daughter had had enough, and I had too. But I was desperately trying to look past the issue and understand that he could not help it!
My doctor finally called on the road, and I unleashed on her. This was a Friday, and, by the time Monday arrived when we were back home, she called me. She told me that she had researched and would give me really strong antibiotics. She would keep him on it as a preventative.
Thankful for that, there was some improvement. It was not enough for actually being able to go places without barking, but it was a marked improvement from screaming the bark that he had been doing. But why was it not going away?
In the conversations with the doctor, she kept telling me that it's inflammation, and the antibiotic is shutting down his immune response. But as soon as he goes off of it, the ticing comes right back. Even with shutting down his response, he was still out of it and ticing.
Now after months on the computer, my doctor even discussed that this was bigger than her and that I should seek out a specialist since the antibiotic had stopped working. He stayed on it though for a prophylactic measure... so that he would not get sick.
I contacted a specialist here in New Jersey and was going to set up an appointment, but a good thing happened! I looked up inflammation and PANDAS on Facebook and found a group called the Oily Panda. Now I belonged to lots of PANDAS groups in a matter of a month, but this one was new.
In January 2014 I started to read all the posts that talked about inflammation... and two specific essential oils for this. Skeptical, I priced them out, talked to a gal (as she was helping me sort it out), and said, "Okay, I'll get these two oils." I had already bought a bunch of other supplement recommendations with little success.
A week later they came, and I gave Jesse some Copaiba essential oil and Ocotea essential oil in Manuka honey for the first time after dinner that night. He walked away and sat down on the chair, and I grabbed my lemonade and sat down to see what we could watch. A minute went by, and I turned my head and looked at him. He was looking at me, and a smile came to his face. Jesse said, "Mom, they stopped!" I said, "Yes, they did," thinking, "Okay, let's see!"
For the next 3 hours Jesse did not bark, flinch, or do any sort of tic and actually started playing with his sister (something that had previously stopped). After 2 hours I was jumping up and down and even posted on the Facebook group something like: "What??? Really!!!!! I am freaking out with joy here!!!!"
Three hours later, the symptoms came back... all of it. It was okay because now I knew I was on to something! For the next 2 weeks, I gave him the two essential oils 2 times a day, slowly increasing the dose until the symptoms were gone... as in GONE... in two weeks. For my son, his inflammation was the culprit in messing with his neurology.
I called the doctor, and in my most excited voice I let her know that his tics were gone: "We slowly treated his inflammation over the past two weeks, and now they are gone!" To that she asked what I used, and, after I told her, she told me that essential oils are not regulated by the FDA; however, she wanted to know the name.
We kept him on an antibiotic for another month until I was feeling competent in starting my essential oil journey. I had researched and read that there are essential oils for supporting the cells to help fight off strep and colds and any of those nasty immune attackers! I was thinking about purchasing a few more essential oils, and, at about the same time, Jesse started gurgling in his throat. I thought, "Noooooo, this can't be happening!"
I purchased a slew of immune-system-fighting oils and also came across a recipe for strep specifically. The next batch came, and I was all over it. The inflammation was already gone, so I had to now build up his immune system so that he would not get everything under the sun! (And this was a child who was never sick when he was younger.)
I used four specific oils for him that worked like a charm. Two days later the gurgling was gone. I also saw that he was much more focused and that I had started to see the old Jesse come back.
This continued to be the case. To this day, almost 10 months later, I was beyond thrilled that I had caught this early and that the cost to treat my son's inflammation and support his neurology was very minimal!
This experience made me dive into the many benefits of therapeutic-grade essential oils. And with each new essential oil we tried, everyone in the family was hooked. My college-aged son loved that he could head a cold off before it started. Another son uses essential oils in the morning for calmness and focus and used double the amount for his SAT's!
Jesse loves essential oils. He puts the oils on himself for his immune system (layers them on the bottom of his feet) and loves to smell different oils to calm himself. We together use cognitive oils (oils high in sesquiterpenes) to support his focus and attention. Sesquiterpenes are the chemical in the essential oil that increases the amount of oxygen in the limbic system of the brain.
In this world where toxins are increasing and prescription medication is becoming the norm on how to treat symptoms, I hope anyone reading my son's story ponders just how powerful building up our body can do for our physical, emotional, and neurological systems!
Additional keyword(s) assigned by the editor: panda, tourette, touretts.
|Supporting Scientific Studies|
|1.||Several scientific studies link essential oils to various related aspects of PANDAS.||Link|
|2.||"The antibacterial activity of 14 essential oils and their major constituents in the gaseous state was evaluated against [respiratory tract pathogens] Haemophilus influenzae, Streptococcus pneumoniae, Streptococcus pyogenes, and Staphylococcus aureus. [The] oils [with cinnamon bark, lemongrass, and thyme being most potent] and their major constituents were shown to be effective against various bacteria tested.... These results indicate that the antibacterial action of essential oils was most effective when at high vapor concentration for a short time."||Link|
|3.||"Streptococcus pyogenes [strep] plays an important role in the pathogenesis of tonsillitis.... [T]hyme, cinnamon, lemongrass, tea tree, lavender, oregano, clove, palmarosa, or cajeput [melaleuca] EOs [essential oils] are known to be active against Streptococcus pyogenes, while oregano, basil, mint [peppermint], rosemary, and lavender EOs are known to inhibit another Gram-positive bacteria, Staphylococcus aureus [staph].... We showed that cinnamon presented the higher activity against S. pyogenes compared to the other EOs tested.... 14 [essential oils] showed antibacterial activity against Streptococcus pyogenes.... Among them Cinnamomum verum [cinnamon bark], Cymbopogon citratus [Xiang Mao], Thymus vulgaris CT thymol [thyme], Origanum compactum [oregano], and Satureja montana [Mountain Savory] essential oils exhibited significant antibacterial activity. The in vitro results reported here suggest that, for patients suffering from bacterial throat infections, if aromatherapy is used, these essential oils, considered as potential antimicrobial agents, should be preferred."||Link|
|4.||"[T]he antibacterial activity of lemongrass oil (LG) and its major components (citral, geraniol, and myrcene) against four strains of clinically isolated bovine mastitis pathogens (Staphylococcus aureus, Streptococcus agalactiae, Bacillus cereus, and Escherichia coli).., as well as their activity on S. aureus biofilm formation [were investigated].... [T]hey inhibit S. aureus biofilm formation and exhibit effective killing activities on preformed biofilms."||Link|
|5.||"[We] investigate[d] antimicrobial treatment of an infected [Staphylococcus aureus] cochlear implant, undertaken in an attempt to salvage the infected device.... 5 percent tea tree oil completely eradicated the biofilm following exposure for 1 hour.... Treatment of infected cochlear implants with novel agents such as tea tree oil could significantly improve salvage outcome."||Link|
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