My son has been having problems for quite some time now. I noticed a distinct difference in him soon after he turned 13, so I convinced myself that his changes were a result of adolescence and puberty. Things improved for a while and then they got bad again, and now at 14, he is worse than I have ever seen him.
He has no interest in eating. He complains of nausea multiple times per day. He has a constant easily visible tremor. Every few minutes he takes a deep breath in and tells me he cannot get a full breath. He is at times deeply depressed and other times he will talk incessantly. He has engaged in severely harmful impulses to the point where he was almost arrested. He has broken his hand twice now in the same place after punching his desk in a rage. His anxiety and irritability are constant to the point where I rarely see the sweet soul I know him to be.
He has horrifying violent thoughts he can’t get rid of. He can’t sleep without medication. A few nights ago he started sleeping with me due to his fear of being alone. He has lost 12 pounds in the last two months and has dark circles under his eyes that do not go away with adequate sleep. He has obsessive fears about our dog dying and has started voicing compulsions related to keeping the dog safe. He moved the couch because he was afraid the dog might find something in it, eat it and die. He asks me to put our dog in his kennel so that he can stop worrying about where he is and what he is doing.
Last week I received a call from a school counselor. My son had been unable to attend class due to how he was feeling and sought out help. The counselor told me my son had been hearing voices. It was the same day as the most recent school shooting, and the counselor was extremely worried. When someone my son’s age talks about having hallucinations people immediately think of schizophrenia. Also people are worried in this environment about being held responsible for “missing signs” related to mental health and the potential for violence.
For a long time I blamed his problems on myself. After being so ill for so long, I felt flawed and broken and assumed that was affecting him. I was a wild child; so I also assumed it must just be the way adolescents are now. Additionally I had a lot of shame about going from being a good provider to being a disabled, limited income one. My entire goal in parenting was to provide a better childhood than I had and I began to feel like I had failed in that.
And lets not forget that as a lesbian raising a son conceived from an anonymous donor I was already an oddity in our society. I’ve always felt the reflection of that judgment hanging over me. I can’t tell you the number of awkward exchanges I’ve had with doctors, other parents, and school officials. To cut to the point, there were multiple opportunities along the way to make the assumption that I was a bad parent. And on multiple occasions I came to this conclusion for no reason other than I am who I am.
To top it off I had a difficult childhood myself which resulted in intimacy and trust issues. I had never been “mothered”. I was terrified that I would be the same mother that my mother was: self-absorbed, lacking a protective instinct, and detached.
I was filtering his issues through all of these lenses and as a result I was drawing the conclusion that my son’s issues were a direct result of my genetics combined with being raised by a very imperfect mum.
Last week we went to see the Orthopedist, who informed us that due to the lack of healing that is happening with his broken hand, he will have to have surgery. As part of the surgery screening process he had to have a nose swab done to detect Staphylococcus. I was surprised to find it came out positive, but learned that it’s not uncommon. As a result he was prescribed an antibiotic ointment for his nose. These are all precautionary efforts to avoid infection during surgery.
While I was looking into the Staph thing, I came across an article on PANDAS. PANDAS is short for Pediatric Acute-Onset Neuropsychiatric Syndrome. To put it very basically, it is an autoimmune reaction related to a Streptococcus infection.
Once I began looking into PANDAS more I found that my son has all the symptoms. I strongly believe this is what is going on with him.
I started thinking about my own history. I developed sudden onset OCD at the age of 13 (this is the primary symptom of PANDAS). I had strep throat at the age of 18, which means I am a potential carrier of the bacteria. My paternal aunt died in childhood due to Scarlet Fever (from Strep). Another paternal aunt had Sydenham’s chorea, also caused by Strep. My brother died shortly after he was born due to heart defects of an unknown cause.
The likelihood of PANDAS increases greatly when the child’s mother has an autoimmune disorder (DING).
I have been seeking behavioral health treatment for my son due to his symptoms. He has a therapist, and most recently we met with a psychologist. My son is convinced he is Bipolar. His Psychologist scheduled a test for him tomorrow at three to try to determine what category his symptoms fit into. I’m going to delay the testing until my son has been evaluated for PANDAS. I’m going to speak to his pediatrician about my concerns. If she blows me off I will seek out another provider.
I can see now how my perceptions about myself and my history affected how I viewed my son’s symptoms. It’s hard to see things clearly when I often feel as if I am fighting for my life due to my own illness.
I feel like I understand now that this is not normal adolescent behavior, or the progressive outcome of a severely troubled soul. I know my son better than anyone else. None of his current symptoms are consistent with who he is. This time, more than ever I will trust my mother’s instinct and seek out proper evaluation and treatment for my son.
Here is a link to information about PANDAS/PANS if you would like more information.