I hadn't realized how long it's been since I posted on this blog. It's amazing how life can just slip by you. I've decided it's important to start up again for my health. Even if no one reads it, it is a way for me to release my feelings.
For many months now we have been taking Grace to a multitude of doctors. She has been exhibiting self-injurious behaviors. In other words, she has bouts of uncontrollable rage where she tries to hit her head with her hands or any available surface. I have compared it to the Hulk. She changes from her happy self to this angry screaming crying flailing monster that cannot be controlled. Then, when it is over, she becomes her regular happy self again, as if nothing happened.
At first, we thought they were seizure related. We put her through an invasive procedure called VNS which I am not even going to explain other than it was supposed to be an alternative to the seizure drugs which have never worked for her. Well, the VNS doesn't really do the job either.
After that it was this doctor and then that doctor and I can't even remember all of them, with no results and no relief. In August, we went to the hospital twice,once by ambulance. Twice she got a clean medical bill of health. Twice I sat alone with her in the sparse psych room at Muhlenberg hospital only to decide to bring her home, afraid of the uncertainty of where she might end up.
Things calmed down a bit in Early September but behaviors began at school. At first just mini meltdowns, gradually building up. The VNS was done in early October and we prayed that it would help. It didn't. More and more often, I would get a call to come pick her up at school. Sometimes, I would come in and 4 people would be trying to prevent her from hitting herself. Several times she tried to hit her head on the walls if her hands couldn't get to her head. We struggled through November and December till Christmas break. It was the worst Christmas ever. Then we tried school at the beginning of the new year only to end up pulling her out before the school made us pull her out. We applied for Home Bound services for two months where she receives instruction at home, which is where we are now. I think we are in the fourth week. I am not sure.
In the beginning of January, I was able to get an appointment with a specialist in New Jersey. He specializes in a condition known as PANDAS/PANS. PANS is "a treatable autoimmune condition that can be triggered by any number of infections. These infections trigger a reaction where antibodies attack a portion of the brain, causing inflammation. This inflammation causes an abrupt onset of neuropsychiatric symptoms such as OCD, tics, anxiety, personality changes", agression and self injurious behavior. The PANDAS doctor was the only one who didn't think we were crazy when we told him about Grace's attacks. They even have a name for it- the Exorcist syndrome. You don't realize how important it is to have someone listen to you and validate your concerns.
Grace was diagnosed as having had a past sinus infection that didn't go away and thus started the inflammation in the brain. We believe this inflammation causes her to try to hurt herself. So now Grace is on a course of antibiotics for a month.. or more. The PANDAS doctor said it may take a while, "months" to see an improvement. So in the meantime, we still have these episodes. I'm not sure how she can go to school until we can get the episodes under control. So now we are looking at other programs that might be able to work with these behaviours.
This is a path I never imagined we would be walking. It's so hard to explain to people because most of the time she is just herself. When these episodes come up, she is not Gracie.It has been hard on us as a family. It's not something I want Joy to have to experience but it is not something we can keep from her either. Also it can isolate you from the outside world if you let it. People who haven't seen the behaviors really don't understand but on the other hand some who have seen them don't know how to react. They become distant. It's become a lonely road and not just because Grace and I are home alone. It is hard to talk to friends. Sometimes I just hit such a low point, I just need someone to listen to me. I don't expect anyone to be able to help me or to change my situation. I just want someone to offer a shoulder to lean on and words of support.
I started writing again to share my thoughts, frustrations, despair and hope. I also started writing because no one knows about PANDAS and a lot of them who do dismiss it as something that doesn't really exist. (Just like women's pelvic pain- been through that fight before too)
So if anyone reads this, great. If no one reads it, that's ok too. It is giving me a chance to share my thoughts and emotions. It's hard enough being an autism mom, but having to deal with all the other factors, it just doesn't seem fair to Grace. I know there are a lot of parents out there who deal with much more difficult issues, but when you are in the middle of this great unknown that has changed your life, it's hard not to feel like you are drowning.
