Okay, I've posted below what I read to Dr. T. I've been through the rounds so many times with so many practitioners, I just decided to brainstorm the whole thing and make sure to leave nothing out.
Starting one morning in November 2009 our family has been on an involuntary odyssey that began when our daughter literally flipped overnight.
Some switch inside her brain flipped. She became obsessive, she refused to wear clothes, her anger turned into vehemence….if she knew profanity, she would have spewed it at us. She called us the most horrible things a 3yo could think of. You…are….so…..mean!!! she would say with cheeks flushed and eyes wide. You are a STUPID STUPID mommy. You are so so so STUPID. I hate you!!!!! Over and over and over. It.was.horrible. Purposely screaming in our ear as loud as she could. We did not know who this was. I went from one day putting her in pigtails to the next day not being able to touch her head. She would scream and rip her clothes. For the first few days, she literally ran around the house totally naked because we could not get clothes on her.
We didn’t know what was going on.
Our daughter had never been what would be termed an “easy” child, but I distinctly remember conversations where we talked about how glad we were that she fell within the realm of “normal” – we were grateful for what we had.
When this happened in November, it was so sudden, so freaky, so much like the Exorcist, that when we googled her symptoms, we always included “sudden onset”. The one thing that kept coming up was “PANDAS”. There wasn’t a whole lot of info on it, but she seemed to fit the description.
I don’t remember any strep in her recent history to this happening. However, I am not the mother who runs her child to the ped for every ailment. Most colds/flus/sore throats, we just treat at home with honey and garlic. I can say that in July of that year (4 months prior), she was exposed to someone who had mono and within a week, she was the sickest she had ever been. She had a high fever for days and was really sick. Again, I don’t usually take her in unless it’s something that lasts for more than 3 days and I don’t feel I can handle at home.
I took her to the pediatrician to discuss PANDAS. He said that PANDAS was “controversial” but sent her for a strep blood test, which came back normal. I discussed her behavior and he suggested she was “testing” us (bh issues). He suggested Zoloft. I said I would not give her an SSRI.
Since then, we have been thru 2 more pediatricians, 2 naturopaths, 2 homeopaths, a craniosacral therapist, OT, we tried the Feingold diet, GF/DF/SF diet, nothing artificial, and Brainchild Nutritionals vitamin/mineral supplements. Alternately her diagnosis was parasites, a TB maism, too much gluten, etc. An orthodontist wanted to expand her upper pallet because of damage at birth. We even had a chiropractor do TENS units on her back, which sent her over the edge of sanity for exactly one week.
My husband always mentions PANDAS, and I always throw it out to the practitioners I have dealt with, but it has never seemed to stick.
Some therapies, notably Feingold (no salycilates) and the Brainchild supplements, put her in a better frame of mind for several months each. So much so that I wrote a glowing thank-you letter to the makers of the vitamins for how well she was doing. But invariably, these all end up bandaids that temporarily help an inflamed brain, but the inflammations invariably wins out. Her brain always wants to revert back to imbalance. I can’t even begin to count the thousands of dollars we have spent chasing whatever this is that has possessed our daughter.
She doesn’t fit into any of the “autistic” descriptions, because she flips so extremely back and forth. On the surface, in public, she seems like any typical child. Which has also confused us and made it difficult to explain our reality.
As she has gotten older, her issues have definitely become more specific, as she has gotten more verbal and able to express herself.
Every day, she tells me that she has “bad thoughts” that she cannot control. She asks me to “help her” not think bad thoughts. When she is calm, I ask her why she acts the way she does. She just says very frustratingly, I Don’t KNOW. I have 2 brains. One of my brains tells me to do bad things. She says things like “I want to be mean to myself.” “I’m never going to be happy.” “Why does everything happen to me?” “I hate my life.” “Why did you have me?” She once screamed to me, “I don’t want to BE this way” . When she heard the term “depression” she asked what it was. I told her it was when someone is sad and/or angry a lot and they don’t know why. My 6-yo daughter said, “That’s me.” One night when we were talking in the dark she said, “Don’t give up on me.”
We call it “reacting” when we see a flare in her behavior. Sometimes it lasts days, sometimes weeks. She will revert back to a totally uncontrollable being. She is simultaneously repulsed by us and clings to us at the same time. She jumps, hangs, stomps, makes repetitive noises, invades people’s space. She still fights with her clothes – it is nothing to come in a room and see her crying, lying on the floor pulling on some article of clothing that doesn’t “feel right.” She can be unreasonable, blank, untouchable. I look at her and cry and say that you have hurt mommy’s feelings. She looks me square in the eye and will say, “I don’t care.” Her anger is turning more and more on herself. She will hit herself in the head with her fists. She will rip up her own artwork. She stomps on a project she and her dad have worked on for hours. The one phrase we hear from her over and over when we try to correct her behavior is, “I don’t care.” And at that moment, she does not.
When she is not reacting, she is a delight. I am told by other parents how well-behaved she is and considerate. She makes me pictures and always writes “I love you” on them. She sticks up for the bullied kids at school. She is very sensitive and easily hurt. When the switch flips, it reminds me of the movie Sybil.
We have never been able to isolate exactly what ticks off a reaction, but most definitely it is an “on/off” switch. I wrote a poem about it in which I described her flailing about, drowning, in a body of water and I can’t get to her to help her. I don’t know how to help her. But I have to watch her drown.
Quite by accident, both my husband and I noted that each time she has been on an antibiotic (once for an abscessed tooth, twice for sinus infections and a couple times for tick bites from Deer ticks) she calms down. Her reactions are gone. We also note that when we put her on ibuprofen for anything, she seems to calm down.