This is part 2 of a mother’s journey with Pandas and Essential Oils. To see how Kathy got to this point, check out the beginning.
Like any mom, I googled PANDAS and read all I could find. 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 plenty of antibiotic left so I started treating my son with it. 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.
Whew, 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 kept coming to mind. Each time strep returns, it comes back stronger.
Fast forward 6 months. My son starts barking again, out of nowhere. That night, I ask my daughter how her throat feels. She tells me “you know, it’s starting to hurt”. This time however, my son’s throat culture comes back as strep as does my daughter. I receive my antibiotic and get sent on my way.
A few months pass, now remember this is the child who I can count on one hand how many times he was sick prior, gets strep throat. Barking and inattention, lack of focus begins, and I think okay , I’ll go get him more antibiotic. I simply hated giving him so much antibiotic especially since before that year , he had never had it.
This time though I was educated as much as I could be at the time on PANDAS. I was going to have a chat with the doctor about what was going on. Surely, when I explained to him all that I knew and concluded, he would willingly give me whatever I needed. That clearly 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 son’s blood work done to show him the high strep titers. 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 made the appointment for the next day. My husband took Jesse in, because I was afraid what I would do to this doctor face to face. Turns out, my husband saw a different doctor. He explained the symptoms then said we wanted to get a throat culture. 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 3 dealing with PANDAS. So I wondered, how long does this keep going? This child who was never sick, now all of the sudden in 2 years suffers through multiple strep infections? What the heck was going on!? More importantly from what I read, how do I stop this when antibiotics don’t work anymore!?
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, he did not bounce back when it was done 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 had become 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 when I finally got back to the doctor to tell her that it never really went away. It now seemed to be coming back full force. Another round of antibiotics was ordered. After that round, while he was bark free while on it, the barking would begin again a few days after finishing the dose, . She let me know that he still had the 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 Christmas 2013, as we stood in line, waiting to see shows, Jesse was sitting among us, ticing ( flinching his body) and barking. This was 2 weeks after being on an 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 torture!
Of course I called the doctor and expressed my concern. The doctor reluctantly agreed so off I went for yet another round. What does that make? Geez I lost count! However, I had piece of mind.This antibiotic has to make a difference, especially right before I go away for 2 weeks. He would finish the dose 3 days before we leave…perfect! Right? WRONG!
The very next day after the dose was done, the tics came back. I called the doctor. She told me, don’t worry about it, there is still antibiotic in his system for the next 5 days. It will calm down. Great, I thought, I’ll be on the way to Disney by then. She did 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. I’ll just start packing. It will be okay.
Packed up and ready to go, the tics/barking were coming back full force. I thought maybe if I just ignore it, they will 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 most certainly was!
Packed up in our SUV, we were on the road. Every hour I would have to say, “Jesse, enough. Please stop!” because I could not take it. If I did not say it, Grace would definitely chime in. Our first hotel stop, I thought 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. 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 to 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 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. She always takes such good care of every detail.
The next morning, as we are sitting in Crystal Palace, Jesse is pretty out of it, Grace is enjoying her breakfast while I am contemplating how I am going to make it through the day. Entering the park literally took 2 hours! As we are sitting at the table, Winnie the Pooh and Tigger come bouncing over to our table. Jesse was able to hang in there. After we were done, the waitress comes over to our table to sing 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. 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. I just sat there for a moment like, Oh yeah I remember this!!!! For the first few years after the autism diagnosis ,this was how most interactions went. I was numb. 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 Disney world on New Years 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. We made it through the day and night!! We ended up watching the fireworks back from the castle lest Jesse’s ticing bother anyone else. 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, we got back to the car at 3 AM. For 2 hours, in a mob of people, Jesse was barking at the top of his lungs every minute or so. We were sandwiched around people. No one said anything, clearly they knew we were all struggling but the occasional pity look came my way.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. 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 in Florida. We walked in. I told the gal that Jesse was sick, and that he needed an antibiotic. My doctor could not be reached that week plus I don’t think she would have given it anyway. She was telling me he had too much and she did not want him dependent on antibiotics. When we finally say the nurse then the doctor I ex,plained that Jesse had PANDAS and asked 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 is 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?” I politely told them to Google it later but if they could give me the prescription so 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. 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?”. I made Jesse engage and respond!
The last two days, even with starting the antibiotic, were limited. It would take the medicine a few days to kick in 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. That was the phone call.
My doctor finally called on the road and I unleashed on her. This was a Friday. By the time Monday arrived, we were home. She called me ,told me she had done some research and would give me a really strong antibiotic. Keep him on it as a preventative measure.
But….why was it not going away??? Throughout the conversations with the doctor, she kept telling me it’s inflammation. The antibiotic is shutting down his immune response. But as soon as he goes off, it comes right back. Even with shutting down his response, he was still out of it and ticing. If I could only get a handle on the inflammation.
Kathy Darrow is a certified RDI consultant . She travels the country helping families adopt the RDI lifestyle both as a consultant and a speaker. She lives in New Jersey with her 4 children , 2 of which have autism. You can find her on Facebook at Mastering Milestones in Autism or on her blog,What is RDI?