I recently looked at the last pictures of my son on my blog and realized that it’s been awhile since I’ve posted about him. Previously, I’ve written all about him and about PANDAS and now seems like the right time for an update. 2019 has been a wild year for him, so far!
As I mentioned in my earlier posts, he was diagnosed with PANDAS at 4 ½ but has done exceptionally well for the past 5 years or so (he’s 11 now!) We still see Dr. Carine in Columbus for his regular care and when things start to get ‘slightly’ off and consult with Dr. Maya Shetreat in NYC if anything serious seems to come up.
Since his last moderate flare in the 3rd grade (when he developed a pronounced stutter and had trouble starting schoolwork due to obsessive thoughts) his condition has been mostly unnoticeable. He did develop one tic in the 4th grade where he repetitively rubbed the right side of his mouth so much that he developed a large scab…that caused him a lot of embarrassment and ended up being quite a growth opportunity for him and those around him (for the first time, people commented on his behavior and the resulting scab) but didn’t really seem to manifest any other symptoms.
Going into 5th grade this year, we were really optimistic. We did meet with the 5th grade teaching staff, the principal and guidance counselor to get a 504 in place for him. His 3rd grade teacher was not particularly understanding of his condition and I wanted to get out ahead of that possibility. His 4th grade teacher had been his 2nd grade teacher so she was already well-versed in PANDAS and we knew we could count on her to look out for him and advocate for him…so we didn’t end up pursuing the 504 plan until 2018.
The whole process of getting the 504 was, for us, pretty easy. We met with the team I described above plus his 2nd/4th grade teacher and discussed what they might see in the classroom. They were all extremely receptive…I think it helped that he had already been in the 5th grade for 3 weeks when we met so they had observed him and knew he was a good, smart kid who doesn’t intentionally cause problems. We wrote up a plan that indicated that he could, if need be, get more time for tests or homework if he was in a flare. We indicated that we (his parents) would advise the teachers if we believed that to be true and that they would let us know if they saw any unusual behavior in the classroom. We asked that we be advised before any significant testing was done so that we could ultimately decide whether or not he was in the right health space to be tested.
For the first half of the year, most things went as planned. He struggled to adjust to the level of responsibility required for 5thgrade (often forgetting to bring assignments home or completing them and forgetting to turn them in) but that seemed much more related to the fact that he is an 11 year old boy than to PANDAS. We (his parents) and the teachers worked with him and he developed a system for being more organized. It took about 6 weeks…but he finally got into the groove.
Sometime in the Fall, however, we noticed that his urinary frequency had increased. He was stopping to go to the bathroom 2-3 times before we could leave the house, was needing multiple bathroom stops on 2 hour trips to Grandma and Grandpas and was using the bathroom even more than that when in unfamiliar places. We had seen this type of thing before with him…a slight flare might cause significantly more peeing but he wasn’t having any problems with bedwetting and it was a minor inconvenience so we didn’t think much about it. It was, however, bad enough that, when we went to Disney in mid-January 2019, we got a DAS (Disability Access Service) pass to allow him to ride rides without having to wait in long lines. We just knew that a 3 hour wait for Avatar would be an impossibility with the level of urinary frequency he was experiencing.
When I look back at it now, I realize that we should have paid more attention to that issue. We returned from Disney on January 20th and, by February 1st, Spencer had developed a slight hand-flinging tic. Within days, he had also developed a pronounced tic that was causing him to roll his eyes up to the right and then down to the left. As the days went on, the eye rolling became so significant that he was doing it every 8-10 seconds and was experiencing severe eye and head pain. He had gotten glasses for the first time during the last week of January and we thought that perhaps the tics were exacerbated by that or the pupil dilation that was administered at that time.
We took him to his regular doctor who increased some of his supplements. Nothing changed. We had him tested for strep (negative) and me tested for strep (negative) as I had a cough and sore throat. He began to miss school due to the eye and head pain and was consistently pretty miserable. We tried everything (short of antibiotics) that we could think of and the doctor recommended with very little progress. On February 9th, we gave in and scheduled an appointment with Dr. Shetreat from NYC by phone. The earliest she could ‘see us’ was February 14th.
I’ll be honest…we probably should have called Dr. Shetreat sooner. She charges $700 for a virtual visit (1 hour) and doesn’t take insurance. She’s the absolute BEST (in our opinion) but, at that rate, we do tend to hold out until we’re absolutely sure we need her!
I spoke to her on the 14th and she had a number of ideas. She reminded me that we had just returned from Disney and that a great deal of exposure (to any number of things) can happen on airplanes and in hotels. She also, rightly, assumed that his sugar intake was probably higher at Disney than normal. She pointed out that the urinary frequency was probably a leading indicator that he had been struggling for some time but that something much more recent had sent him over the edge into these debilitating tics.
Dr. Shetreat added a few supplements and asked that we stop letting him consume Tylenol, corn and peanuts and limit his sugar intake. (He already doesn’t eat corn syrup, food dye, gluten or dairy). She also ordered 32 blood tests and requested that we order and administer a mold urine test to see if mold in our home might be impacting him. She also recognized that, since we hadn’t spoken to her in 2+ years, his current regimen of supplements, etc. hadn’t been changed while he had grown significantly from 8 years old to 11. We scheduled the blood tests, ordered the mold test, made the supplemental changes and arranged to speak to her again in 4 weeks.
Unfortunately, Spencer’s situation did not improve and he missed the greater part of a month of school. In the month of February, I think he attended 5 half days and 2 full days. While some of that was due to snow days and holidays, the vast majority occurred because he was just in too much pain to attend. Luckily, his teachers were informed and incredibly supportive and we had the 504 in place. We effectively homeschooled him every day after work and on weekends for a month and he was able to keep up with his work and maintain As in every class.
As you can imagine, however, this was all pretty stressful. My boy loves school and really wanted to be there with his friends. That’s how I knew how poorly he was feeling. In 6 years at Worthington Hills Elementary School, he had never once gone to the nurse to come home and now, he was doing so every day. He grieved not seeing his friends and, although he played a lot of video games and watched a lot of TV and movies with us, he was bored. Eric and I used up almost every bit of vacation we had during this time (he can stay alone but leaving him feeling so bad all day every day just wasn’t something we could do) and ultimately ended up recruiting a ‘village’ from the neighborhood to stay with him during the last week or two that he struggled.
We also geared up for the bloodwork. Neither Spencer nor his dad can stand the sight of blood and the idea of a blood test (though he’s done them successfully in the past) just totally freaks him out. We didn’t tell him until the day before he had to do it (he doesn’t like to be surprised but didn’t need a lot of time to dwell on the issue) but he was pretty concerned about it for the entire 24 hours leading up to the blood draw.
The phlebotomists at Nationwide Children’s Close to Home Hilliard are, by far, the best there are for children in Columbus, Ohio but they had to take 4 large vials of blood for 32 blood tests. That would be tough for anybody but for an 11 year old who goes white and gets lightheaded at the sight of blood, it was torture. He made it through with very little trouble…drank some juice and laid down for a little after…but it took an emotional toll on both of us. I was amazingly proud of him for getting through it and incredibly grateful to the staff at NCCH that day!
We were supposed to talk to Dr. Shetreat again in mid-March but, with Spencer not attending school and our level of concern increasing, we moved the appointment up to February 28th. By then, Dr. Shetreat had all of the tests back except for the urine mold test and was able to give us a lot more advice.
For those of you with PANDAS of your own, Spencer showed elevated ASO, AntiDnase B and mycoplasma titers indicating a short and long term exposure to strep and a long term exposure to mycoplasma. He also had elevated cytomegalovirus numbers, low potassium and high AST and triglycerides. All of these things, Dr. Shetreat indicated, were reflective of the fact that his mitochondria were being challenged and needed assistance in functioning properly.
The doctor decided that it was worth it to try a one-time course of antibiotics and put him on Azithromycin for 10 days. She also suggested that he eat at least 1 banana every day for potassium and add supplements like Vitamin D, Mito support, CoQ10, Stamets 7, Turkey Tail, Black Cumin Seed, Bitters and CBD oil. She also had us add in 1 week of Emergen-C. Within a few days of taking the antibiotics and adding the supplements, Spencer’s headaches had subsided and, although he continues to perform the same tic occasionally, the frequency of the tic dropped off significantly. We struggled a bit (and lost 3 more days of school) when one of the supplements caused him severe belly pain but we were able to figure that out and he has now fully returned to normal and is happily headed off to learn every day!
We still don’t have the results of the urine mold test back but will speak to Dr. Shetreat again on April 2nd and learn more about that as well as understand more about the long term plan for his supplementation. For right now, we’re just incredibly grateful that he’s stable without the antibiotics and that she was able to help us get this under control. Urinary frequency has gone back down to nearly normal and we’re all starting to feel a little less stressed about this episode.
I’m always reminded, when something like this happens, that we never know when Spencer will be impacted by PANDAS. I tell people that one of the primary challenges of PANDAS is never knowing whether my child will be neuro-typical or special needs from day-to-day. Sometimes, things go so well for so long that I forget that myself.
This episode has been extremely challenging…the emotional toll of him not feeling well, trying to help him keep up with school, days missed from work and everything else have caused all of us to be a little bit on edge. Spencer was an amazing trooper through all of it…I’m so proud of how he handled the whole thing. On top of his attitude and his diligence about his school work, I have to say:
1) I’m incredibly grateful for my partnership with my husband. We traded off time home, trips to doctors, chasing down prescriptions, etc to keep the boat afloat for these 2+ months.
2) Spencer’s friends and school community are incredible. His teachers kept in touch, brought work to the house, excused certain assignments and were otherwise amazingly supportive. His friends kept in touch, asked questions about what he was going through and made him feel as ‘normal’ as possible while this was all happening.
3) Our ‘village’ saved my life. I put a note out on Facebook asking for help when Eric and I had finally spent all of our vacation time and Spencer was still unable to go to school. The folks who came out of the woodwork to volunteer to help us were amazing…some of them don’t even know us that well but they bent over backward to help us take care of our boy! I couldn’t be more touched and grateful for that kind of support.
We learn something every time PANDAS happens to us. This time, we learned that early indicators are just that: indicators. If something small is happening regularly, it may very well be the precursor to something big. We need to take action on it before the big thing happens. We also need to make sure that we are regularly tuning Spencer’s supplement regimen. His health may be in good control but his body is rapidly changing and what works today may not work tomorrow. Finally, I think we’ll pull the trigger on the expensive phone call a little faster next time: it cost us a great deal to get this situation resolved for Spence but it could possibly have been resolved more quickly if we had reached out to Dr. Shetreat before we went back to our local doc a second time.
PANDAS is part of our lives. We don’t know today what will happen to Spencer at puberty but it may always be part of our lives. I know that we are part of a large worldwide community that is slowly learning about this condition and I’m happy to share our ups and downs with all of you!