PANDAS- A very difficult blog to write...

This is hard to write about... but I feel like I need to. I have been grateful in the past when I have shared about difficult subjects, both for the support offered and for just how much better it feels to get it off my chest. I would like you to read about my morning.

Our Morning

Vinny has good days and bad days. Today is apparently not a good one. I was only awake for 15 minutes before he left, but this is what happened in that 15 minutes. 

Vinny freaked out that his pants were falling down and he needed a belt. They weren't falling down, but since he felt like he wanted one, I tried to help him find one. His top drawers are packed, so I had to really dig through them to find one. He cried and yelled because me digging involved "messing up" his drawers. I close one drawer; he opens it and re-closes it. I go to the next drawer and fortunately find the belt. I leave the drawer open and start putting on his belt. He screams at me and runs to shut the drawer before letting me put on his belt. I pull a tag off his belt and put it on the couch next to me while I start putting on his belt. He grabs the tag and throws it away. I finally put on his belt. We walk out of his room and he pushes me out of the way so that he can shut his door, yelling behind me, "I'LL shut the door," although I wasn't even going to try to shut it. 

We proceed to the kitchen, where he asks Marc what is for lunch. We are running late today and at the end of the groceries (I shop on the weekend), so he has a pizza lunchable. Vinny starts crying. This is odd, because he normally asks for these when we go shopping. I try to calm him down and explain that we are running late and need to go and that is all there was. Marc opens the lunchbox and tries to show him it is a good lunch, and he even packed him chocolate milk. Vinny starts to yell at us explaining, "When I open the sauce, it will get all over my hands!" I put a napkin in. It doesn't help. He is crying and complaining, too upset to listen. Marc starts to get upset and threatens to take away quarters if he doesn't stop complaining and get in the car. 

Marc zips up the lunchbox, but Vinny determines it is not zipped all the way and starts to fuss with the edge of the zipper. In the middle of all of this, he starts to cover his mouth and gag, declaring that "something smells bad." Marc insists that nothing smells bad (truly- nothing did) and Vinny eventually stops gagging. Although the lunchbox is most certainly zipped all the way, he cannot get it zipped to his satisfaction and determines he needs to hold it by that corner of the zipper. Since the corner has no good place to hold, the lunchbox keeps falling on the ground, which is not helping matters (or helping us get him out the door in time). I calmly insist that he hold it by the handle or put it in his bag. He eventually acquiesces, distracted by the baggie of cereal that I am handing him. He opens the baggie and starts to eat some. As he is on the way out, he tries to close the baggie and can't, so he asks me to. I close it and hand it back, but he hands it back and again and says, "Close it all the way." I give it an extra squeeze for good measure and Marc and Vinny walk out the door. I hear more yelling on the way to the door. Who knows over what....

I wish I could say that this was just an abnormally bad morning, but it is not. It is sadly pretty typical. There are times when things are better, but there are times when they are worse too. As you have probably figured out, Vinny has obsessive compulsive disorder. For anyone who has thought I was joking or overreacting in any prior comments about Vinny's OCD, please understand that I am completely serious. It is a real problem, and I am really tired of always seeing my child upset and crying.

He wasn't always like this. He has always been a little particular, but it wasn't the cause of crying and meltdowns until this past year. It has gotten drastically worse over a relatively short period of time. I started doing some research and found that there is a cause for sudden onset or sudden worsening of OCD in children... scarlet fever. It was like a light bulb went off in my head.

Vinny had scarlet fever in June. It was pretty bad. His fever was so high he was practically limp in my arms. It was a Friday night, so I rushed him to urgent care. Despite having both Tylenol and Mortin in his system, his fever seemed unbreakable and he was throwing up all over. At the urgent care, they rushed him right in. He laid there on the examining bed, throwing up and crying. They gave him a strep test and discovered he had strep. With the red rash all over his body, they diagnosed him with scarlet fever. They eventually got his fever down with ice packs and sent us home. It was a sucky weekend, but with antibiotics, he was better by Monday. He had missed his preschool graduation carnival, which was sad, but other than that, everything was fine and we went on with our lives...

.... or did we? Shortly after this, Vinny started having anxiety attacks. At first, they would happen if he felt like he was being left alone, even for a brief moment, like alone in a room. I even blogged about it on June 23rd. When this was happening, I did a bunch of research, searching for answers to why my totally normally kid would all of a sudden act so irrationally. I couldn't find any reason.

But now, it is starting to make sense. This disorder is called PANDAS, which means Pediatric Autoimmune Disorders Associated with Streptococcal infections. On the National Institute of Mental Health's website about PANDAS, it says additional symptoms associated with PANDAS (in addition to the OCD) can include separation anxiety, which they describe as, "Child is 'clingy' and has difficulty separating from his/her caregivers. For example, the child may not want to be in a different room in the house from his/her parents." This is a perfect description of what was happening with Vinny. He also has some of the other symptoms too. Since June, he has started waking up in the middle of  the night and calling for us or attempting to get in bed with us. It happens almost every night, usually around 2-5am. Sleep disturbances are a symptom of PANDAS. When I described all of this to his doctor and showed him dated blog entries describing the symptoms, he was surprised but completely agreed with me that it is probably PANDAS. However... he has never seen it before. He had read about it and knew what it was, but had never seen it. 


So, it is real and it has a name, but... what now? 


Vinny has an awesome doctor who genuinely cares about him, and he wanted to do more research on it. As he did more research, he found that some cases seem to be worsened by the child actually still carrying a resistant streptococcal bacteria, so he sent us for blood work to see if this is the case. If it is, then we will start aggressive antibiotic therapy. In 4 out of 12 cases, the symptoms completely resolved by doing this. While that is only a 25% chance, it is still a chance that this could go away. (We are waiting for the results of the blood work to see if this might help us). 


Other theories suggest that some autoimmune therapies, such as being given intravenous immunoglobulin, but there have only been clinical trials on this, and none of the results have been conclusive. So, there may not be a "cure" to Vinny's OCD. Most research suggests that, in patients with PANDAS, the scarlet fever infection actually damaged the basal ganglia, the part of the brain responsible for movement and behavior. (Incidentally, the good news is, in some cases what this has resulted in is tics like Tourette's syndrome. I suppose I should be grateful Vinny only developed OCD). If this is the case, then like other people with brain damage, the only thing to do is therapy to re-train this part of his brain. At first, the thought of considering this as "brain damage" seemed frightening and like a life sentence, but if people can re-learn walking and talking after a major stroke, then Vinny can certainly un-learn some of this anxiety. 


The doctor also offered drugs to help deal with it in the meantime, suggesting that I might have great difficulty getting him the therapy he needs quickly. I initially turned down the drugs, since I have a hard time thinking about putting my 5 year old on Prozac, but I don't know if I am completely closing the door to this option, because the doctor was right... I can't find a therapist. There are NO child psychiatrists in the area, so I started calling regular therapists, psychiatrists, and psychologists on our insurance plan. None of the ones I called were accepting new patients. One of them just didn't answer. This is not going to be an easy road. What to do now? I can't afford him having therapy without it being under our insurance. I guess I will just keep expanding the miles in my search area. If we have to drive him to Los Angeles, well, then, I guess we will have to. 


But in the meantime... I kind of feel like crying. On Sunday, he decided that my hands were dirty (they weren't) and wouldn't hold my hand unless I pulled my sweatshirt down over it. He cried that the kids in Sunday school were touching him. He asks us to "play with him" but then yells and screams at us for touching his stuff. The tension in this house is so thick you can practically smell it. I am tired of walking on eggshells around my 5 year old. I am even more tired of watching my 5 year old have anxiety attacks.


This parenthood stuff is a whole hell of a lot harder than it seems on the surface.