P.A.N.D.A.S.

We had our appointment at the Pediatric Diagnostic Clinic. But first, a preface:

At our last pediatric appointment, with our NEW pediatrician, I got a call saying that Catherine's strep titres were the highest they had ever seen at their clinic. Strep titres are essentially the antibodies our bodies produce to get rid of, yep, you guessed it, Group A Strep and subsequent strep infections (I guess they go all the way up to H?). That didn't really surprise me since Catherine had had Group A Strep a couple of weeks before having the test. However, it did surprise me that it was "so high" after two weeks of antibiotics (with three ear infections on those antibiotics).

Then came last Thursday, when Catherine had her 3 year Well Child Check. I explained to our old pediatrician (who I think we will stay with for the time being - she DOES know our family really well and finally seems to be listening) that Catherine had been doing so well since her dose of antibiotics. I was very excited about it but 1) I was discouraged as that would mean the Pediatric Diagnostic Clinic would not see Catherine at her worst (I spoke WAY too soon on that one), and 2) I was simply waiting for the next shoe to drop. Meaning, I knew it wasn't going to last long (called that one).

No sooner than the next day did Catherine start to plunge back into the hell that is whatever it is that is plaguing her. Frequent outbursts, inconsolable temper tantrums, very aggressive, separation anxiety and frequent "humming" which we now know are her tics.

Saturday and Sunday were nightmares. Monday came and guiltily, I dropped Catherine off at daycare and enjoyed my day, sans nightmare. James and I hung out, and I anxiously gathered things in preparation for today's appointment.

It's embarrassing to say, but I nearly cried through Catherine's entire appointment. However, I have to say that the staff at Blank Children's Hospital is awesome, and they made me feel like a normal, concerned mom, rather than a crazy person with a possible diagnosis of Munchausen Syndrome by Proxy.

Essentially, I sent Catherine's running google doc to the doctor for him to look it over before I got there. I knew I was going to be a mess, and I knew that in that anxiety-fueled mess I would forget things. So I sent it to them. The biggest thing that stuck out to me: ALL of them read it. The nurse read it, the Resident read it, Dr. Elliot read it. BEFORE I got there. And then they wrote down all the questions they had for me, which made the appointment much shorter than I thought it was going to be.

Catherine was none-too-thrilled to be there, and when we got there, she immediately registered a fever. WHAT? Then I laughed. I had even said to a friend the other night that I bet within the week Catherine had an ear infection. For her to have a fever, I was almost right on the money, although it showed up a few days earlier than my prediction. Nevertheless, I was right. Because I know my daughter. 

So we were whisked away to a waiting room where they brought her toys and just like that, she started lining them up. Not playing with them, but lining them up. Certain toys had to go certain places. When I picked up a My Little Pony to play with her, she threw a fit. Score one for mom - the doctor was going to be able to see Catherine nearly at her worst. In looking in her ears, she nearly kicked herself out of my arms. This wasn't a kid who didn't want to be there. This was an uncontrollable, instinctual urge to throw herself out of my arms. She nearly succeeded. Looking in her ears does not hurt, and she knows that. But she fought it with everything she had.

Dr. Elliot, the resident (I cannot remember his name for the life of me), and Nurse Anne were so patient with her. The gist of all of it was that Catherine does indeed, have PANDAS (Pediatric Acute-Onset Neuropsychiatric Disease Associated with Strep). Essentially, it's an autoimmune disorder where Catherine's immune system overreacts to every illness. Mostly, strep. So her body builds a ton of antibodies to ward off the infection. Unfortunately, strep is a molecular mimicry bacteria, and for whatever reason, these antibodies will start attacking the brain. Mainly, the basal ganglia, which is responsible for behaviors. What strikes me is that chemicals that cross the central nervous system, can exacerbate symptoms. Cue Zyrtec. And food dyes.

Most of the behaviors manifest themselves as severe ADHD, OCD, ODD (oppositional defiance disorder) and children will have "tics." Not to mention the anxiety that goes along with all of that, particularly separation anxiety. The awesome thing (read: shitty) about all of this is that the tics can be so different from one kid to the next. But Catherine's is humming. The worse she is, the more humming she does and the less speech she has. ADHD and OCD have such wide-ranging criteria that it's hard to figure out that when Catherine lines her toys up, or when she has her baby JUST SO in her stroller, that is OCD. ADHD is her fidgeting. All. The. Time. We call it rapid toddler adjusting. She just cannot sit still. I think the reason she loves to dance is because it allows her to get her wiggles out. This also manifests itself as jerky movements. Cue Catherine's dancing again. Emotional lability (think schizophrenic) with a tendency to have wide-arching emotions (Catherine to a T), is even more of a tell-tale sign of PANDAS. But all of these symptoms HAVE to include the elevated strep titres. Not to mention, all of these go away when on antibiotics. Cue Catherine's antibiotic diagnostic test almost three weeks ago.

Combine these symptoms with elevated strep titres, plus observing the behavior over periods of time (thank GOD that I had the sense to start a google doc), and viola. PANDAS.

The even MORE awesome thing (read: shitty) is that with PANDAS, you're on a roller coaster and each dip in the tracks gets deeper and deeper. Meaning once the strep infection is gone, there are still antibodies left. Cue another strep infection, and you can have twice as many antibodies as you did before. Meaning worsened behaviors. This is exactly what we have seen in Catherine since she was 18 months old. It started out with good days and bad days. Then it was good weeks and bad weeks. I can now say we have survived bad months and more bad months, with usually a few days of good. These past two weeks that we have had that are GOOD have been a miracle in itself and make me actually believe we are on the right track.

The silver lining in all of this? No one has been diagnosed over the age of 14. Meaning it truly is a pediatric phenomenon. Will she grow out of it? Possibly. Will she always have an autoimmune disorder? Possibly. No one knows because this is so new.

Dr. Elliott said she was the youngest patient he has ever diagnosed, as well as the one with the highest strep titres he has ever seen. He said it is very clear that she has had several strep infections that have gone undiagnosed in her little life.

This is what made me cry in the car in the parking garage while Catherine watched Thomas the Train. There was no way I was going to try and drive out of there while losing my shit.

Part of me is thankful we have a diagnosis. Odds are, her ear infections have been strep infections all along. It just finally took this nasty, green goop coming out of her ear to see it.

The next steps? There are a lot of them. They will take up a large part of my summer.

Thursday, we have an appointment with Dr. Young, who is an ENT. He specializes in difficult cases like this, and works with Dr. Elliot in the removal of adenoids/tonsils to try and stem infections. We have an appointment for a Penicillin Immersion Allergy test in two weeks to see if Catherine really is allergic to amoxicillin, or if the rash she got the first time she took it (and the last time...) was an allergy, or a manifestation of the autoimmune disorder. That will be a three hour test where they give her medicine over a period of time and watch her reactions to it. Yes, we will be locked in a room for a period of time. God help me. And did I mention that if she does not test positive to the penicillin that this is what she will have to take, two times a day, for a YEAR in order to hopefully help her through this?

From there, we still have an appointment with the nutritionist, which Dr. Elliot was going to refer us to next, as it seems as though gut health is linked to strep infections as well. This might help alleviate her potential for getting strep, AGAIN, and hopefully curb some of the side effects of PANDAS.

Lastly, we have an appointment with a psychiatrist, who will help us deal with Catherine's rages. Meaning, she will give us tips and tricks to diffuse her, as well as help her and our family cope with her OCD, ADHD, ODD, and severe anxiety (particularly separation anxiety, like when I just go out to grab something out of my car for a SECOND, or when James falls asleep before she does, in which case she FREAKS OUT).

We will still have a geneticist test her, but appointments are a year out. Yes, A YEAR. But at least we have the referral. It will be nice to know what else is going on.

From there, I am reaching out. What are the odds that I have a co-worker, who I consider a good friend of mine, whose son was just diagnosed? So we can take this road together, which we started today with many texts back and forth. I posted on Des Moines Moms Facebook page, in hopes that I can reach out to others, and see what has worked for them.

I am googling the shit out of this syndrome, because I know it will always be an uphill battle. Meaning, I will always have to fight it. It's not widely recognized by the medical community, meaning insurance probably won't cover most of it. AWESOME. But I'm prepared to pay what I have to pay, and go to the ends of the earth for this little girl.

I am hoping that we will have many more good times, and fewer bad times, now that we have a path forward (kind of...).

As I have said before, I am going to be the best damn mom to this little girl that I can be. God gave her to me, I will take care of her.