Day #2 of IVIG #2
March 19, 2006 my son Mies had a "seizure-like event" that Children's neurology would never quite commit on. I was there for it and I'll go ahead and disagree. It was a seizure. It was a series of seizures. It was awful. Two days later I sat and held his hand and tried to comfort him as two nurses and a senior peds resident held him down while an intern performed a lumbar puncture on him to rule out various obscure infections like E. Equine and W. Equine encephalitis and more common ones like echovirus and influenza. They checked his blood for a bug called California lacrosse and for things like measles, mumps, rubella. He had a CT and an MRI of his brain and a failed attempt at an EEG. He stayed in the hospital for three days, screaming continuously for most of it. Our roommate had drawn the short straw.
He'd had several seizures which resolved with Ativan in the ambulance (I'm told. I couldn't ride with my sweet scared Mies because I was home alone with his baby brother Max and we had to go by car). By the time I arrived at the ER, he didn't recognize me and had lost the ability to walk, talk or ever stand without falling over to one side. He was in a hospital crib flailing about, trying to get up and not being able to. He looked into the distance beyond me and it seemed like he was seeing something or someone. I hoped maybe my uncle, an ER nurse who'd once worked in Pittsburgh and was now passed away, was maybe there with him. He seemed to calm down. Go ahead and call me an hysterical autism mom for thinking that. I'll have some observations for you in return.
He was admitted and I sat by his crib for three days and nights. He couldn't have slept in there even if he was well because he and I coslept. They wouldn't allow me to sleep with him so he didn't sleep for three days straight (always good for a child trying to recover from an acute onset neurologic deterioration not to sleep of course. It's not as though sleep is vital for the body to heal itself. But hey, it wasn't safe for us to cosleep, right?)
We didn't sleep. I sat and watched my baby not recognize me and not able to function. Screaming and banging up against the metal hospital crib. What if he didn't recover? What if this was our new normal? I was set to take the MCATs in two weeks (the entrance exam for medical school). Would I be able to go if this was my Mies from now on?
When they came to take him in for his lumbar puncture, I asked what they were doing. They'd said they would do it under sedation because he had to be sedated for the MRI anyway. They told me, no, they would do the LP and then sedate him for the MRI. Compassion abounded. The issue, I knew, would not so much be the needle and catheter they would be putting into his back but rather the fact he needed to be still and would be held down. If you think about it, he didn't understand what was going down so it's as if someone were to kidnap you and hold you down and stab you in the back. You'd be upset too. You'd be traumatized. I certainly hope you would fight.
And he did.
The doctors asked if his dad and I would come in the room with him and told us we probably shouldn't because it would be upsetting. His dad declined and that's for the best (he almost fainted when I got my epidural with Max). I said I would go in, I wouldn't abandon my baby.
And so I sat holding his hand and telling him it would be okay as he cried and screamed and fought while the two nurses and one senior peds resident held him down and the intern directed the catheter between his vertebrae and collected the spinal fluid samples to test for both east and west equine encephalitis as well as echovirus and influenza. Afterwards they all congratulated the intern on what a good job he'd done under such difficult conditions. I don't recall them comforting Mies or me but I assume they did. It's the congratulations that stand out in my mind. It was the moment I thought "do I really want to be a doctor? Is this what I want to become?"
I'm glad the intern got it on the first try. I'm sorry I didn't fight them more on the sedation issue. Sorry I let me son get tapped by an intern for that matter. He lucked out.
It is quite the experience to sit and watch your child suffer that way. My Mies had been getting blood drawn from his tiny little arms on a regular basis since he was six days old. He never cried. Not once. I swear the needle was bigger than his arm.
He recovered his ability to walk and talk (they were surprised how normally functioning he was. Apparently when they'd taken his history repeatedly and I'd insisted his baseline was that essentially of a typical 21 month old other than some receptive language delays they hadn't believed me. Why believe an hysterical mom?) In the end they deemed it a seizure-like event followed by an adverse reaction to Ativan (it wasn't. But not knowing what happened never seems to bother pediatric specialists. Most anyway). We went home. We stopped off at Toys R Us and bought a train table and we went home and slept.
Such things traumatize you. I am not speaking metaphorically. It is trauma. No one tells you that. That you have PTSD from raising a special needs child in a culture that does not support you. You do. You need help as much as a combat veterean. You don't get it. You'd probably refuse it if they offered it because it would take time away form fighting for your kid. There are no monuments or memorials for you. There is no holiday recognizing your sacrifice or Facebook profile picture frame saying you are a proud warrior. You ought to be proud of yourself, though. You didn't choose this but here you are. Brave as can be.
And so we arrive at the story of day one of Max's second IVIG. You may be able to guess it wasn't an ideal day.
It has been 8 weeks and 4 days since the last treatment. He showed improvement in the typical "sawtooth" pattern but then wound up in a bad spot. I got labs and he came up positive for strep despite being on treatment dose Omnicef at the time (what kind of mutant strep germs are we creating ?) I upped the ante on the antibiotics but was glad the second treatment was coming up.
He was not.
He was terrified.
I waited until the night before to tell him. I reminded him he would get to play on his computer all day during it. We began the ritual of driving mass amounts of Gatorade late. Fumble on my part.
The next day the home health nurse couldn't get an IV. She got one on her third try but then it blew a quarter of the way through the IVIG. Up until his point, Max had held it together pretty well given hpow he was feeling. At this point, he fell apart. I gave him a have-a-stiff-upper-lip-kid speech and we went ahead with trying for an IV a fourth time. It didn't work and Max was hysterical at this point.
We decided to start the whole process over the next day. Max was not happy about this but we agreed and the nurse headed home. Max cried and said he didn't want IVIG anymore. He did not care if it would make him feel better or save him from taking 36 pills a night. He was done. No amount of computer games was worth it. (I am not above bribing in this situation, I freely admit. I bought him a coup[le)
We told him if he would drink tons or Gaturade between now an then it would go better. I don't know if thie is true but I sure as hell hope so. We're set to repeat later today.
I had to call the infusion pharmacy and ask for a replacement IVIG because it's not safe to use it in a delayed manner once it's spiked. I'm hoping the replacement bottle doesn't mean we will have trouble getting our final refill later in the year cleared by the insurance company. They were luckily able to overnight it even thought toda is a Saturday. It is safely in our fridge awaiting infusion.
Max is with his Dad today playing piano and drinking yellow Gatorade (no red this time. Our carpet is still stained for the post-IVIG vomit last time. I'm learning)
He will be brave I'm sure, but there will be tears rolling down his cheeks. I stand by with a towel and wipe his face since his arm is occupied. I wipe his tears and distract him as best I can. He tells the nurse about classical music and whatever game it is he's obsessing on at that moment. And he tells her how many vials of blood he's had drawn and how many IV attempts he's had.
He says it sucks as he cries and I agree. I tell him yes, it sucks. It's not fair. Not fair that he's sick. Not fair it took so long to figure out what he had. Not fair he's afraid and angry so much. But I am proud of you, I say. You are brave. You have grit.
He is. He does.
Max had improved with the IVIG. His tics are much better. His grades are back up. His handwriting isn't 100% but it's almost there. He is obsessing somewhat less and sleeping in his own bed. But there is a long way to go. And mutant strep lurking arounb every corner.
I spoke about PANDAS to my old residency this week. Taught them what it is and how to diagnoses it. Taught them the things these families go through. Taught them the myths of the PANDAS-denying doctors and the harm they do.
My mentor was there and assured me he is a believer and that it makes perfect sense if you consider rheumatic fever and its mechanism. I asked him for help getting the word out to other family physicians and he agreed to help me. And I am grateful.
Two of my other children have been diagnosed with PANS and we are fighting to save them too. They have both improved on ibuprofen and antibiotics. They both have the same immune deficiency as Max. I hope they don't need IVIG but only time will tell.
There is a trauma to PANDAS for our children and for us too. We must speak our truth and let them speak theirs. We must hear them and do all we can to get as many people to truly listen as we can. For their sake and for ours. Telling your story is the only way through trauma. And we will get through. And they will too.
get them through too.
The Bear thrives in silence. He puts out his propaganda. But the Resistance is strong and brave. We speak truth to power as we wade through the trenches. Love beats hate. There will be tears rolling down our cheeks but we will wipe them and go on. The Bear will not win the war.