Facebook, June 30, 2012: I feel like I need a week off work just to research my kid’s diagnosis and figure out how to do everything we need to be doing for him!
Facebook, July 2012: ‘Need to buy a present for a bday party for one of The Dude’s classmates today. Asked him what she would like. He told me that girls like ‘dolls and pink and purple things. But they also like balls.’. Had to keep Hubs from busting a gut!’
So, as you can see from the above quotes, life continued on for us despite The Dude’s diagnosis but I spent most of my free time trying to come to terms with what was happening and what we needed to do to help him!
Thanks for bearing with me through this multi-part story. I’m glad you are interested enough to keep reading and hope that I’m helping someone who might need this information! No, I’m not sure how many parts there are going to be when I’m finished. I just write until I feel like I’m at a stopping point or am emotionally exhausted – whichever comes first.
At this point in our story, it’s early July 2012 and my appointment with the DO is impending. The first Central Ohio PANDAS Support Group meeting that I can attend isn’t until July 19th. In preparation for my first meeting with the doctor, I gather all of the research I’ve accumulated and make sure to have good, clear videos of The Dude’s neurological tics. As I may have failed to mention in previous posts, every single time we went to see the pediatrician, the tics seemed to become far less pronounced and frequent. There’s nothing like that kind of experience to make you think you are going crazy! There was no way I was going into see this new doctor (an ‘expert’ on PANDAS) without physical proof of what we had been experiencing.
I arrive at the doctor’s office and am presented with a multi-page questionnaire about my son. The doctor wants to know about his symptoms, his personality, his activities, his daily habits (food, elimination, sleep), any surgeries or procedures he’s had, any illnesses he has experienced and anything interesting that may have occurred during my pregnancy. You think you know and remember everything there is to know about your child when they are 4. But filling in that questionnaire was overwhelming! And what were the implications? Just filling in the answers made me feel like I was doing everything wrong:
- I got in a hot tub before I knew I was pregnant.
- I stopped taking medication for depression before we conceived and suffered from severe depressive symptoms until I was 11 weeks pregnant. It got so bad that we gave up at that point and had a doctor put me back on Zoloft.
- I had terrible UTIs during my 2nd trimester because The Dude’s head was compressing my bladder. I was hospitalized and they gave me IV Cipro after several courses of oral antibiotics were unsuccessful.
- I gave up nursing at 10 months. (Usually a point of pride for me…but what if nursing him longer would have kept him safe?)
- My son had a cow’s milk protein allergy and was extremely colicky whenever I ate dairy while I was nursing. Sometimes I ate pizza and tried to ‘pump and dump’ but what if I made him sick?
- The Dude suffered from infantile asthma for the first 3 years of his life. He was given a number of steroid bursts and breathing treatments in the hospital and had a nebulizer that he used daily at home.
- He had a febrile seizure at 1 1/2 years old when I took him to the pool with a low-grade fever from teething.
- He used ‘screens’ from the time he was pretty young and knew all the words to the Cars movie when he was 2.
All these things piled up as I sat in the waiting room completing paperwork and wondering what the doctor was going to say. Had I caused this somehow? Was there something I could have done to prevent it? Mommy guilt is a powerful force.
After what seemed like hours (but was probably 45 minutes), I finally got in to see the doctor. She spent a significant amount of time listening to me describe The Dude’s symptoms and asking questions about his history. While she was very knowledgeable, I found her condescending and a little harsh. My husband and I disagree on this point: he wants the best doctor regardless of whether or not he ‘likes’ her. I would truly prefer to have a good relationship with the 2nd best doctor. Nonetheless, I knew I didn’t have a lot of choices and this doctor came well-recommended so I stuck it out.
While asking questions about his history, she indicated that taking antibiotics while pregnant was definitely a potential factor in the development of PANDAS. I was devastated. To this day, I don’t exactly understand what the correlation is but I have never forgotten the only thing I heard on that topic that day: this is my fault. She tried to alleviate some of my guilt by insisting that I had done the best I could under the circumstances but the deal was sealed by then. She was apologetic, I was crushed.
She also had a lot of questions about his eating, sleeping and elimination patterns. She was very critical of his diet: my 4 year old was eating a typical American 4 year old’s diet. He usually consumed burgers, chicken nuggets, mac and cheese and hot dogs. He was allowed ‘treats’ of all kinds (non-dairy ice cream because of his cow’s milk protein allergy, popsicles, candy, etc.) as long as he finished the rest of his meal. She immediately noticed (as you might have) that in the video I brought to demonstrate the severity of his tics, he was eating a red popsicle. Food dye…in particular red food dye, was OUT! Moreover, my dude had suffered from constipation for years (there’s actually a very funny story there that I might write about some time) and she was adamant that he needed to poop every day. We were lucky, at that point, if he pooped every 3 days.
The new doctor also recommended that we needed to do everything we could to eliminate gluten. My husband is very sensitive to gluten so I wasn’t terribly shocked or horrified by that recommendation but I knew we had major changes to make in what we were feeding The Dude. I wasn’t sure I would even be able to get him to eat anything except his ‘standard fare.’ Based on her concerns about diet and elimination and his PANDAS symptoms, she recommended two or three supplements that she wanted him to begin taking immediately: Enhansa (a particular brand of curcumin), fish oil and magnesium. While fish oil could be acquired as a liquid, the other two products were capsules or pills. I had a 4 year old! How were we going to get him to take multiple pills a day?
The doctor also ordered blood work. Here’s where I knew we were in trouble. The Dude had been to the hospital many times for asthma, ear infections and a seizure but had never had a blood draw. What magic did she know of that was going to get him to allow us to take blood from his arm? I knew I wasn’t willing to hold him down to get it done and Hubs, unfortunately, faints at the sight of blood. Luckily, she was prepared for that concern and recommended a particular branch of our local Nationwide Children’s Urgent Care as the best at phlebotomy for children. I wrote down her recommendation but doubted the blood draw would be successful. She stressed that we needed to check titers for The Dude. In lay terms (and as best as I can explain it), titers in the blood can indicate an exposure or ‘response’ to a given bacteria. An elevated (or EXTREMELY elevated, as the case may be) ASO titer would indicate that The Dude’s body was reacting to strep exposure in an unusual way. Other elevated titers could indicate a response to Lyme or mycoplasma. We needed to confirm that strep was the culprit here and that PANDAS was the correct diagnosis.
Finally, she handed me a book called The Autism Revolution. That was the point when I almost walked out. She had watched the videos, heard my child talk and interact with his brother and listened to my description of his intelligence and personality. There was NO WAY that my child was on the autism spectrum. I felt deflated…clearly she just didn’t get it.
Seeing my reaction, the doctor took the time to explain to me that she was perfectly clear that my child did not have autism. Nevertheless, she wanted me to read the book and understand the mechanism that the author explained for what causes autism and what we can do to help children affected by it. I clearly remember her saying, ‘If this had happened to The Dude when he was 18 months old, you might have a spectrum kid on your hands. Instead, it happened when he was 4 1/2 and you have a PANDAS kid.’ I was confused, to say the least.
In my next post, I’ll explain what I learned from that book and how it impacted our understanding of PANDAS and our willingness to follow the new doctor’s recommendations. I’ll also write more about the dietary changes we employed, the results of the blood draw and our adventures with supplements in pill form.
Part 4 to come!