IVIG # 4 Day #0
“When I despair, I remember that all through history the way of truth and love have always won. There have been tyrants and murderers, and for a time, they can seem invincible, but in the end, they always fall. Think of it--always.” --Mahatma Gandhi
So, first of all, let me assert my firm belief that the only thing we have to fear is...fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance. In every dark hour of our national life a leadership of frankness and of vigor has met with that understanding and support of the people themselves which is essential to victory. And I am convinced that you will again give that support to leadership in these critical days --Franklin D. Roosevelt
Powder is scarce and must not be wasted. Do not fire until you see the whites of their eyes --William Prescott
Max is infusing. We are on the second day of his fourth IVIG infusion. His IV from yesterday blew and we had to have Jo put in another one. Max was a trooper for both of them.
He had improved steadily after the third IVIG but then a couple weeks ago I got the text I'd been fearing. It read, "Max's tics suddenly returned and spaced out again, losing focus."
My response: "Shit." Followed by, "Need to get IV in him." He was sick with something. He needed IV vitamin C.
I was hoping maybe Eric was wrong. Kids tend to improve in a sawtooth pattern after IVIG so maybe... But I knew that wasn't it. Our sixteen year old had had a virus recently and Max had apparently picked it up. It was just a 48 hour bug, though, so it wouldn't necessarily mess things up.
He came into the office and I told him he'd be getting a line in. He fell apart. He was three years old again. He thrashed and wept and screamed. He's too big to hold down now. I tried reasoning. I tried pleading. I tried yelling. Nothing worked. So, I went to my last resort: bribery. "Name your price," I said. He said he almost had enough saved up to buy a collection of electronic instruments and I said, "done."
Yesterday he was 12. Today he is 3. Yesterday he ate things I haven't seen him eat in years. Today he will only McDonald's cheeseburgers "with just ketchup." Yesterday he was happy. Today he wants to die.
Just like that. You have to see it to believe it. I wish these wretched doctors who tell my patients their child doesn't have PANDAS could see it. How could you deny it? They don't believe parents. They couldn't deny their eyes.
As I was leaving the office an hour later, it happened. A cough. A burning pain in my chest. I was sick. I quickly developed muscle aches and malaise (aka feeling like hell). I was hot and cold. It was my worst nightmare: influenza A.
Influenza can throw PANDAS into horrible flares. It can undo all the good IVIG has done. What would it do to Max? How far would he regress? We're finally making progress. This can't be happening.
I put us both on Tamiflu and ran IV vitamins into Max. He was allowed to eat the only thing he was willing to. In the past we had refused to give into his extreme food restriction when he was flaring like this. I now see what a mistake it was. His blood sugar drops and he's a thousand times worse. Kids with PANDAS often have really labile blood sugar that has a strong effect on them. When Max first had onset at 3 1/2 and we refused to give into his food demands, his blood sugar would drop and he would vomit from it.
You cannot discipline PANDAS out of a child. You will not spoil them by giving in during a flare. You must get them through it and then make your expectations clear once they're out of it. I wish I had known this years ago. I wish one of those specialists had told me he had PANDAS. And I wish I could get all the schools and relatives and friends of these families to understand these things. A lack of discipline does not come and go overnight. A spoiled child with picky eating from being indulged does not develop in an instant.
I knew I had to keep the family from getting the flu and had to get Max better as quickly as possible. This meant I had to get better as quickly as possible. This meant something awful: I would have to take a day off work. I couldn't see patients anyway given I was sick and couldn't risk getting any PANDAS child sick with flu. I'd also lost my voice and couldn't do phone appointments. But I did more than this. I actually stayed home for a day. Sat on my couch. My first sick day taken as a doctor. Doctors work sick. This PANDAS is a strange thing.
Max and I both got over the flu more quickly than I thought we would. I halted all school work and made him rest. Fed him, made him drink fluids despite his protests. It's two weeks later now and he and I are over the flu but residual flare symptoms remain. He's back to playing with his siblings and eating fruit if I demand it. His brain fog is lifting and he's doing homework again. But his tics are severe and he's not himself. So, IVIG.
On day 4 of the flu he actually wanted to go play outside in the snow. He willingly ate eggs for breakfast. I knew he would be okay.
I hope he will get back on track. I have faith he will. I've faced my worst fear this winter and it wasn't nearly as bad as I'd thought it would be. I'm grateful for this. I am sure it is because of everything we're doing baseline: IVIG, LDN, vitamins by mouth and IV, antibiotics, monolaurin, omega 3s, pushing his dietary boundaries as much as we can, reducing stress through homeschooling, emphasizing sleep, fresh air and gentle exercise and prayer. Acceptance and love combined with reminders of the importance of grit and fighting the Bear.
I am hoping Max will improve enough with this round of IVIG that we can begin the modifed ketogenic diet. We will also be giving medial cannabis a try as it holds great possibility for immune modulation, reduction of inflammation and helping with his anxiety and eating issues.
Max is sitting and ticcing loudly as I type this. The tics are constant. I used to count how many he was having per minute and cite it for the doctors I spoke to to attempt to give them an idea of the extent of it. What's the count when it's constant? Infinite? The IVIG is running into his little veins. A constant stream too. The Bear threw flu at us but it won't keep us down long. Nine years and still kicking. We will not be defeated. Onward, onward, onward to victory. Soon enough the Bear will fall.