Facebook, August 2012: ‘Funniest moment of the day: Having given him 15 minutes to swim before bedtime (our house has its own pool), we set a timer for the boy. Suddenly the back door flies open…he has decided he needs to poop and is yelling, ‘Stop the clock! Stop the clock!’
So we took our blood draw order from the DO and headed to Nationwide Children’s Urgent Care in Hilliard (highly recommended by our doc as the best children’s phlebotomy staff in the area and I have to agree!) I was very nervous about how it was going to go. How exactly do you get a 4 year old to hold still while a needle is inserted in his arm? If you’ve read the birth story I published over the past two weeks, then you know I’m not the kind of mommy who would be willing to have him restrained so I was just holding my breath and hoping for the best.
I did tell The Dude prior to our arrival at the the Urgent Care that we were going to do a blood draw. One thing that has always been true about him (and never more so than when he is in a flare with PANDAS) is that he needs to be prepared for what is coming. He’s a thinker and doesn’t like to be surprised. While I knew that we would risk the chance that telling him would cause him tremendous anxiety, I also knew my child: if we tried to pull something over on him, it wasn’t going to go well.
Luckily, he’s also a ‘rule follower.’ That’s been to our tremendous advantage throughout his life but particularly with regard to his medical condition. He’s just the type of kid who, if he thinks something is the rule, will do it because he thinks he has to. So telling him that the doctor said he had to do the blood draw to get healthier was definitely impactful. He was scared and asked A LOT of questions. I waited until the day before to tell him (just to minimize his anxiety) and then promised to be answer all of his questions and be with him the whole time.
The ladies who drew his blood were fantastic. They never once suggested that they hold him down or that I should. They let me hold him on my lap and one nurse held out his arm while the other inserted the needle. We kept up a continuous conversation while the blood was being drawn and I reassured him over and over again that we were almost finished. He cried…more out of fear than pain, I think but as soon as it was over, he was fine. It wasn’t nearly as traumatic as I had feared. Since that time, we’ve probably done at least 5 blood draws. We always go to Nationwide Children’s at Hilliard and it gets a little easier every time.
Within a week, we had results from the blood work and they confirmed what we suspected: The Dude had PANDAS. While the blood work is super extensive and confusing (if you are a PANDAS parent and want to know more detail, please email me), the primary indicators that we found were that his Anti-DNase B titers were elevated and that he is heterozygous for the MTHFR C677T genetic mutation. Trust me, I had no idea what that meant either.
As best I can explain, the elevated Anti-DNase B titers were the indication that his body was reacting oddly to Streptococcus A bacteria. While the normal range was 0-100 IU/ml, his blood tested at 409. These titers indicate exposure to a recent strep infection and allowed us to feel confident that the strep exposure was what was causing the tics, OCD, bedwetting and anxiety that he was experiencing.
We were very lucky in this regard. We knew that The Dude had had strep in April…and we noticed his symptoms and suspected PANDAS rather quickly which allowed us to get his blood work analyzed shortly after the onset of his symptoms. Often, parents don’t know anything about PANDAS until years after their child’s symptoms begin and, by the time PANDAS becomes a suspicion, it’s impossible to tell if the child was exposed to strep the onset or not. Often, these kids are treated for years for Tourette’s or mental health issues prior to finding a doctor who suspects PANDAS. Even then, it’s usually just an informed guess for the doctor as to whether strep was the original culprit.
In addition to the elevated Anti-DNase B titers, we were also advised that The Dude has a genetic mutation. The mutation is referred to as being ‘heterozygous for the MTHFR C677T mutation’ or the ‘detection of one copy of the methylenetetrahydrofolate reductase mutation.’ Again, in lay terms, here’s what I know: MTHFR is a critical enzyme in the body. It’s required to repair DNA, switch genes off and on and other important functions. It’s also critical to the conversion of folate and folic acid (forms of Vitamin B9) to L-methylfolate (5-MTHF) that can be used by the body. While the mutation may or may not be directly related to PANDAS (coincidentally or not, a lot of the parents I talk to with PANDAS kids seem to have this mutation or one like it), it’s definitely good to know.
Since he is only heterozygous for the mutation (i.e., he doesn’t have two copies of the mutation), it’s milder for The Dude but basically, his body will have some trouble breaking down Homocysteine. It’s an amino acid that can damage the lining of your arteries and other cells. It’s naturally formed in the body but usually gets broken down by 5-MTHF. The mutation makes it more difficult for that to happen. Elevated homocysteine levels in the blood is a risk factor for heart disease, stroke and other forms of cardiovascular disease. It’s also been linked with other health problems and can lead to folate deficiency if not treated and supported with a diet rich in folate.
With all of that information gleaned from the blood draw, our doctor advised us to continue with the recommended supplements, remove corn syrup from his diet as well and begin something called Osteopathic Manipulative Treatment (OMT.) We continued down this path while continuing to give The Dude Zithromax to hold his original symptoms at bay.
In the months following our first meetings with the doctor, we saw ebbs and flows in The Dude’s symptoms. We would complete a course of Ceflex or Azithromycin and see several weeks of very few symptoms. Then, suddenly, he would wet the bed one night or not be able to put on his socks (they suddenly didn’t ‘feel right’) and we would know that the tics were about to begin again. In September 2012, he rubbed a patch on his nose raw with his tics. Back to the doctor and back on the antibiotics we would go. We were making progress but none of it was permanent.
There were good times: The Dude turned 5, the Ninjago birthday party at Gym Extreme, a trip to Notre Dame and lots of quality family time. There were also really bad times: the Halloween melt-down that I reported back in my Halloween is Melancholy for Mama Panda post and the day The Dude accidentally wet his pants in front of his friends. But we made the best of it.
Facebook, October 2012: ‘The Dude, who is in charge of handing out candy bc he still can’t bear to wear a costume, is making paper signs for the porch that say, ‘This is Spencer.’ I have no idea what they are for but I think they are sweet.’
As for the OMT, I’ll be frank: I may or may not have been the one that began to refer to it as ‘that woo woo shit’ as some point in early 2013. OMT is hands-on care. It involves a DO using her hands to diagnose, treat and prevent illnesses or injury. The doctor moves the patient’s muscles and joints using techniques including stretching, gentle pressure and resistance. Basically, it involved taking The Dude into the doctor’s office 1-2 times per week where he would lie on a table and the doctor would move his limbs around and identify areas where he was ‘stuck.’ It’s not like chiropractic care where she would ‘crack’ or ‘pop’ joints and not like massage where she might rub muscles…so I honestly don’t know what she was doing. It kind of just looked like some kind of ‘laying on of hands.’ All I know is that the boy enjoyed it and always left the office relaxed. I have no idea if it helped with his symptoms at all.
By January, 2013, we had gone to Florida to see ND in the Orange Bowl and were planning a family cruise in March. I started a new job in February and, all in all, The Dude seemed to be doing ok. We weren’t out of the woods (as you’ll realize when I actually write about the cruise) but life was generally better! We hit some bumpy patches occasionally and continued to learn more about PANDAS and non-traditional medicine.
Facebook, January 2013: ‘Spence has 100.5 this morning. Doc recommending sambucus and ossillococcinum. Good thing she’s an awesome doc…I feel like I just got an Rx from Hogwart’s!’
Before I write more about how things developed in 2013 and how we came to be cared for by a doctor in New York City, I’ll leave you with this video of the boots by the door to my garage. This is The Dude, in the bathroom, singing his heart out. He would never have let me film it…but I caught it and took heart in the fact that, despite any obstacles he might have been facing, he was still a pretty happy kid!
More to come…