There I was, sitting in Disneys 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 a minimal 16 hour drive.
The gal on the other end of the line, “sure we can cancel your reservation, I’m so sorry that you had to go to the emergency room.” I could barely get the words Thank you out.
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 tried. It was exciting to watch as my sons engagement increased. While addressing his neurological development, there was always a piece of the puzzle 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, he never got sick. Literally up until the age 11 he had 2 colds…that lasted a day. One of them he 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…the program we used with him. I wanted to help other families, 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, something is different. Jesse seemed out of focus, 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 she had strep throat. Jesse was with us so they tested him too. Negative for him.
The second day of antibiotics for Grace and Jesse started making this girgling 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, mostly 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, to which his reply was, “what am I doing?” We would get into this discussion about him barking and he just stared at me in this confused state. The “barking” got worse. Within a week, he was barking every few minutes, and seemingly had no idea 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 did I realize this was not something to take lightly.
What is PANDAS?
So like any mom, I googled PANDAS and read for 2 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 her had antibiotic and had plenty left so I started treating my son with the same antibiotic. Keep in mind that his strep culture came out negative. Within a day, the barking was diminishing and I was relieved….there was enough antibiotic for both kids to finish the round.
Schew 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 came across the information. With the reading I did though, 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 starts barking again, out of the blue. That night, I ask my daughter how her throat is and she tells me “you know, it’s starting to hurt”. This time however, my sons throat culture came back as strep as did my daughter so I received my handy dandy antibiotic and was sent on my way.
A few months later, now remember, this is the child who I can count on one hand how many times he was sick, and all of the sudden he keeps gets strep throat. Barking and inattention, lack of focus begins, and I think okay whatever, I’ll go get him more antibiotic, although I simply hated giving him so much antibiotic especially since before the year before he never even had it.
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 surely, when I explained to him all that I knew and concluded, he would willingly give me whatever I needed. Obviously that did not happen. What did happen was 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 sons 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 basil ganglia nerve in the back of the brain, he gave 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, 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, my husband saw a different doctor. He explained the symptoms, said 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. Alrighty I thought, round 3 dealing with PANDAS. So hmmm I wondered, how long does this keep going? This child who was never sick, now all of the sudden in 2 years multiple strep infections? What the heck was going on!? More importantly from what I read, how do I stop this if Anti biotic stops working!?
It would not take long for me to not only be pondering this question, but dealing with it head on. The antibiotic that Jesse received, while it 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 was just so used to doing it, 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…all did not really make any significant change. It was November and I finally got to the doctor again, and told her that it never really went away and now seems to be coming back full force. Another round of Antibiotic 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 antibiotic in his system and to give it 2 weeks.
Now we are 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 seeing, the light shows, live nativities, music shows and walk through presentations. For this Christmas, Christmas 2013, as we stood in line, waiting to see shows, Jesse was sitting amongst us, ticing ( flinching his body) and barking. This was 2 weeks after being on Antibiotic. We made plans to go to Walt Disney world to ring in the New Year. The tics are getting worse…maybe he needs another round of Antibiotic? 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 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? Geez I lost count! I however had piece of mind…okay all this antibiotic has got to make a difference, especially right before I do away for 2 weeks. He would finish the dose 3 days before we 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, Ill be on the way to Disney by then. So she did tell me that she can prescribe Clonindine for him in case they do not and we are in Disney…perhaps that would give relief.
Sigh okay it is what it is, Ill just start packing. It will be okay.
Packed up and ready to go, by now, the tics/barking was coming back full force. I thought maybe if I just ignore it, they will go away. It is a two day drive to Disneyworld 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 in the road. Every hour I would either have to say, Jesse enough please stop just because I could not take it. If I did not say it, Grace would definitely chime in. Our first hotel stop, I decided, hmmm Maybe I should try the medication, I mean that was a pretty rough ride. Thinking back now, I think I was just hoping one morning to wake up from it all. We all went to sleep…in bed the noises stopped…ahhhhhhh peace and quiet.
Bright and early the next day, I am up and about and Jesse is waking up….he is laying in bed and Grace and I are 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 Disneyworld 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 and 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 Disneyworld the day before New Years Eve. Wait I just realized I left out an important detail . 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 Years Eve, would somehow be better and 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 we needed to get to the Magic Kingdom bright and early lest we be shut out of the park aka filled to capacity.
We are sitting in crystal palace, Jesse is pretty out of it, Grace is enjoying her breakfast and I am contemplating how I am going to make it through the day…. It was interesting getting in. Entering the park literally took 2 hours! As we are sitting at the table, Winnie the pooh, and gee tigger too 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…to which he barely acknowledged as in did not know what was happening. As she was almost done her song she looked at me as 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?” and handed me the cupcake. She walked away and I just sat there for a moment like, Oh yeah I remember this!!!! 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 from that LOOK.
I pulled myself together after all we were in Disneyworld on New Years Eve, there is no time for anything else but keeping it together! The excitement of being in the most magical place in the earth helped for sure…and we made it through the day and night!! We ended up watching the fireworks back from the castle so 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 am it was clear 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 2 hours…yes 3 am we got back to the car. For 2 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. Noone 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 lets 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 that he needed ABX. My doctor could not be reached that week plus I don’t think she would have given it anyway because she was telling me he had too much and she did not want him dependent on Abx. When we finally say the nurse and doctor and I explained that Jesse had PANDAS and if they could just give me Azithromzin I will follow up with my doctor in New Jersey. As they both looked at me, the Doctor said, What’s PANDAS? Is it related to Tourettes? He has Tourettes right? My reply was NO he does not have tourettes, he was fine until he got strep last year. They both said Wow really…so I politely told them to Google it later but if they could give me the ABX and I could be on my way to another dinner, this time with Cinderella, that would be fabulous. 2 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, Not sure why don’t we ask him…and I made Jesse engage and respond!
The last two days even with starting the ABX we were limited, it would take the medicine a few days to kick in and so walking around with a barking child was something I had quite enough of. Our second to last day was Hollywood studios and it was clear I needed to cancel our future plans…so that was the phone call…. With tears I said to both kids okay tomorrow is Epcot and then we are done. Our last attempt of a ride was in Epcot for test track. Then we headed home.
I had my son upfront with me because my daughter had enough, and I did too but I was desperately trying to look past the issue and understand that he could not help it!
My doctor finally called one the road and I unleashed on her. This was a Friday and by the time Monday arrived, and we were home, she called me and told me she researched and will give me really strong ABX and keep him on it as a preventative.
Thankful for that, there was some improvement. Not enough for actually being able to go places without barking but a marked improvement from screaming the bark that he was doing.
But….why was it not going away??? With the conversations with the doctor she kept telling me its inflammation, and the ABX is shutting down his immune response but as soonas he goes off it comes right back. Even with shutting down his response he was still out of it and ticing.
Now months on the computer and my doctor even discussed that this was bigger than her…and I should seek out a specialist since the antibiotic stopped working. He stayed on it though for a prophelatic measure… so he would not get sick. I contact one here in New Jersey and was going to set up an appointment…but a god thing happened!! I looked up inflammation on facebook and PANDAS, 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 oils for this. Skeptical I priced them out, talked to a gal as she was helping me sort it out and said okay Ill 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 Copaiba Oil with Ocotea oils 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 smile came to his face, and Jesse said “Mom, they stopped!” I said yes they did…. Thinking okay lets see! For the next 3 hours Jesse did not bark, flinch or do any sort of tic and started playing with his sister (something that had 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!!!! 3 hours later…they 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 oils 2 times a day slowly increasing the dose until they were gone…as in gone…in two weeks. For my son, his inflammation was the culprit in messing with his neurology. Called the doctor, and in my most excited voice let her know that his tics were gone. We slowly treated his inflammation over the past two weeks and they are gone!! To that she asked what I used and after I told her, she told me they are not regulated by the FDA, but wanted to know the name.
We kept him on antibiotic for another month until I was feeling competent in starting my essential oil journey. I had researched and read that there are 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 oils and about the same time, Jesse started girgling in his throat. Noooooo this cant 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 gone. I had to now build up his immune system so he would not get everything under the sun! ( A child who was never sick when he was younger) I used 4 specific oils for him that worked like a charm, 2 days later the girgling was gone. I also saw that he was much more focused and that I had started to see the old Jesse come back, and it was continuing to be the case. To this day, almost 10 months later
I was beyond thrilled that I caught this early and that the cost to treat my sons inflammation and support his neurology was at a minimal cost! This made me dive into the many benefits of Young living essential oils…and with each new 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 did double for his SAT’s!!!! Jesse, he loves Essential oils, put the oils on himself for his immune system ( layers them on the bottom of his feet), loves to smell different oils to calm and we together use cognitive oils ( oils high in sequiterpenes) to support his focus and attention. Sequiterpenes are the chemical in the 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 sons story ponders just how powerful building up our body can do for our physical, emotional and neurological systems!