Another peds visit and having enough.

The soothing voice of Pierce Brosnan rolled over me from the back seat like the waves in the movie Brady was watching. It was the only thing propelling me forward on the snowy streets and my bald tires through sloppy roads. I was on my way to Brady's pediatrician. Again. I had just ended Brady's annual review for his medicaid waiver. Of course it was an awful experience to talk about him doing even less than he had a year before when he was determined eligible. You see, it is supposed to be this great thing when your child's number is up and you have access to funds others dream of. And it is. But it was so much work to get his number I thought it would never happen and we lost so much time to that process. Then, as it turns out, the kind of help he would need while on it was very different than just the behavioral therapy others claimed would change his life but I wasn't at all sure about. As with everything, what you think is important isn't and what you never expected to, happens.

I was on the ragged edge before this meeting, Brady having had two really bad days in a row. As soon as his case worker left, I had the idea to look in his throat, just to see, if maybe there was a reason for his backsliding. I was shocked when I found puss on his tonsils. I made a sick visit and loaded him up in the car, having Abby pack snacks and drinks for the ride. Then Brady fell asleep on the way. I pulled into the parking spot and tried really hard not to lean my head on the steering wheel and just cry. I couldn't believe we were here again. I wanted nothing more than to be at home with all of my kids making hot chocolate and reading books in front of the fire. I steeled myself as I let Brady sleep a few minutes before lifting his limp body out of the car and into the five degree air. The frigid air shocked him awake instantly and he asked immediately "why are we here?" A question I didn't really have a great answer for. They had never done anything here except tell us everything it wasn't. I was sick of it and so was he. But for lots of reasons we remained their patients.

I took him inside and we checked in. All his vitals were normal as always. We saw the nurse practitioner who asked why we were here. I told her he had puss on his tonsils. She asked "And how exactly is it that you came to discover your son had puss on his tonsils?" I gave the briefest description I could about his behavior and speech regressing the last two days and how given his recent history this could be implicated in this occurring. I said he is receiving once a month IVIGs as treatment. He had been drinking a ton of water, and this was an indication to me that perhaps his throat was bothering him since he really doesn't communicate ongoing pain at all. She of course did a throat culture, and then requested a urine sample. I thought she was testing for a UTI since that was what he was most recently seen for.

After the tests were done and we were waiting around, she came back in and said the rapid was negative but they would grow the culture and call us if anything turned up. She took her print outs and sat down in the chair next to me like she was pretending to be friendly or concerned. She said that she had to test him for diabetes since he was showing signs of drinking a lot. It also turned out negative. Really? I'm the crazy one for looking in the back of my son't throat (but not taking his temperature constantly) and you think he could somehow have developed diabetes during the course of being examined by every department at Children's? She told me it was probably viral and that the fact that he was on prophylaxis made it unlikely that it was strep. Unlikely is my middle name beeootch!

I am shocked that I never say any of these things to any Dr. my son sees. Anyone who knows me will tell you I don't shrink from confrontation or miss a chance to yell. I suppose it is because I feel so defeated that I know no matter what yelling or even calmly explaining my position won't change a damn thing for my son, and that is all that I care about right now. But for her to question me or treat me like that, it really was the final straw. None of the specialists who have seen my son have ever doubted for one minute that something is catastrophically wrong and seem only to be concerned that they rule out all life threatening conditions before they treat the life limiting one that he obviously has. It has only been our own peds office, the ER docs or nurses, those who see the every day that see me an an unreliable reporter, a mom looking for some reason to explain away my son's delays. The problem with that is, why at the age of five would I all of a sudden be looking to them for an answer? They had never done anything for my son, and I never looked for them to. I took my son to specialists who did help him, and will continue to do so until he is recovered.

When the nurse practitioner asked me if I had any questions for her or wanted to discuss any of the tests I told her no I had the information that I needed. She seemed genuinely surprised that I wasn't seeking some kind of interaction or relationship with her. The last thing I wanted was for Brady and I to be in another Drs. office getting another test he didn't want. If she thought anything different she was off her damn rocker. I don't know why I even let it bother me what other people think, except that she treats me like I am crazy for getting the throat culture and then when Brady sees the specialists, they all act like why didn't I get his throat swabbed? He even has a standing order for a throat culture at Children's!

So, I've decided to drive all the way out there from now on and not deal with all of this nonsense. I want my son seen by a Dr. who at least has access to the professionals treating my son, if not a high likelihood they will be eager to learn about his condition and perchance be passionate enough about getting my son better to invest time in researching possible treatments. I have to say that I am really disappointed in the lack of interest his current pediatrician has demonstrated during this crisis. As my mom says "you want a Dr. who will cry when they close your file after you are dead." Brady has a lot of those Drs. on his team right now, just not the one who should have been there from the beginning.

I am not sure what, if anything, I will say at future appointments when someone doubts my intentions or observations. I think I will develop stock answers and questions such as "my child is under the care of this neurologist and developmental pediatrician who have consulted and prescribed treatment for a medical condition with the following risk factors and symptoms. These symptoms resolve upon treatment." If someone asks me how I came to notice a particular symptom I might ask, on the knowledgeable advice of my father "How does the manner in which I noticed a symptom pertain to the presence of that symptom?" In other words, WTF does it matter why I looked in my son's throat and saw puss on his tonsils, do you NOT see puss on his tonsils? I mean there is puss there right? So what f'in difference does it make? My question from deep down in my heart to the medical professionals everywhere who have failed my son is: WHY DIDN'T YOU NOTICE THE PUSS? WHY DON'T YOU HAVE ANYTHING TO SAY ABOUT HOW RED THE BACK OF HIS THROAT IS? HOW MANY TIMES BEFORE I STARTED PAYING ATTENTION ON AN AS NEEDED BASIS THAT HE HAD THE HUGE RED WELTS AND BUMPS?

Phew. I can feel my shoulders dropping already! I am a few cleansing breaths away from not wanting to bitch slap one of these people and myself for not standing in their face and standing up for myself and my son in the process. I am his voice and charged with protecting him. It is such a frustrating experience (can you tell?) to know your child is sick and not be able to find someone who can help him. If you throw someone in the mix who doesn't even think your child is sick, in the face of actual evidence, no wonder it takes so long to be in the face of someone actually believing you and then having to wait for the symptom to show up that one day of your appointment. There is a lot of faith and belief involved in all of this.

No one believes it?

It's not because of the science, it's because of the philosophy.

If you cannot agree on a set of criteria that you need to demonstrate something, how can you ever agree when you get it?

~Alcino Silva
as quoted in 101 Theory Drive, a great book on memory and the politics behind research. The most amazing thing I learned is how the Cam Kinase II (that is involved in PANDAS) also determines whether something is encoded in your memory or not. The connections just keep coming!