During the summer of 2009, after divorcing my husband, my son and I moved into our new home. Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer. My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses.
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed. TJ was attending zoo camp as he had several times previously. When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned. I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”. TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary. Friday, my good friend agreed to watch TJ while I had some appointments. He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch.
After an ER visit indicated “nothing wrong” we went home confused, exhausted, and not quite knowing anything except WOW, something was seriously wrong. Our pediatrician got us into a pediatric neurologist early Monday morning. After EEGs determined “possible” seizure activity, we had a trip back to the local children’s hospital for a CAT scan and MRI to determine or rule out a tumor, etc. Both came back clean. An invasive spinal tap indicated nothing. I will remember that doctor’s appointment forever and his unkind words, “I don’t know what’s wrong with your kid, but you need to take care of his out of control anxiety before I will be able to treat him”. We never went back to that doctor. Another doctor told me “this is TJ now, you need to accept him. He will never be like he was”.
For the next several months we were housebound except for doctor appointments and testing. Getting TJ into the car and on the road was always a daylong exhausting ordeal. Finally, TJ was accepted into the partial hospital program at the Children’s Hospital. He was a trouper and really tried but this was exhausting. He “graduated” from the program with some at home charts and award programs to do at home. These alone were frustrating, especially to a competitive kid because he tried his hardest, but just couldn’t.
Going from a healthy child to a sick child overnight created some adjustment issues not only with the medical world but also the “education world” who put us on a roller coaster too. Before this all happened, TJ went to the doctor once a year for his well visits, never a problem and never ill. Now he had a “medical” team and even had a medicine management doc (I didn’t know they even existed before). TJ was a “normal” in the box child excelling academically and in sports. Now, I found myself spending time defending his and my actions with the school. School meetings were torturous and mean spirited. Being involved in community and school volunteering for 30+ years, I was shocked and dismayed how the educational system treated us. After nearly a year of meetings and conferences, I withdrew TJ and began homeschooling during February of 2011, feeling that reserving my energy and resources to get TJ “back to normal” was the best.
For three and half years life was anything but normal. TJ suffered from:
Although educational and medical professionals told me I had to be stern, I knew as a mom that would be counterproductive. My tone and manner had to be consistent at all times to avoid a meltdown that would last for days. I was continuously told this was a manipulative child with severe emotional problems that would never improve unless I reacted. I had well-meaning friends tell me he had a nervous breakdown from all the emotional stress. Thankfully, his therapist kept those concerns at bay. He was the only member of TJ’s “medical” team that knew the old TJ and his acceptance of all the emotional stressors. To him, I wasn’t a crazy mom and neither was my child. He worked extensively with us doing some serious exposure therapy. I spent many a day driving back and forth to his elementary school teaching him in the parking lot. I tried every suggestion giving by well meaning friends that were doctors or teachers… a few worked, most didn’t.
Over time TJ would seem to improve, then WHAM ten steps back. Then off to a new doctor we’d go who would say he outgrew the dose or the medicine, we needed to increase the dose or change the med. (I now know that those ten steps back were flares due to a current exposure). Every doctor gave a different diagnosis and a different medication. At one point TJ was taking 27 pills a day to control anxiety, seizures, tics, hallucinations, and concentration. Prior to the onset TJ never even took a tynenol. He was now a walking zombie, trapped inside himself and unable to leave the house.
Hearing about PANDAS and Diagnosis
Just over a year ago, a client came in and told me about his grandson and I needed to get TJ to this doctor. I immediately contacted TJ’s neurologist and psychiatrist. The neurologist dismissed immediately and said “no way”. The psychiatrist said, “It’s a possibility. Let’s do a blood test”. Lets just say I didn’t get a warm fuzzy feeling at the hospital lab when the tech had to google PANDAS and giggled when all that showed up were pandas bears. The Doc called and said although the titers were slightly elevated, she doubted he had PANDAS.
I did my own research and read Beth Mahoney’s book “Saving Sammy”. We immediately thought, this is “our” story and asked friends and TJ’s therapist who knew the “old” and “new” TJ what they thought. I needed an outsider to confirm what I already knew. I finally went against the advice of his medical team and contacted that pediatric neurologist in New Jersey. I had to commit to confirm or rule out this possibility.
Diagnosis and Treatment
After a consultation and initial exam, this pediatric neurologist diagnosed TJ on November 7th, 2012. FINALLY, a doctor that listened, that didn’t make it sound like I was “making things up”, that mentioned things to me before I mentioned them to him, and so importantly that said “we can get the old TJ back”. He ordered testing (blood and EEG) for confirmation. After reviewing TJ’s previous EEGs, he didn’t see any seizure activity on any of them. TJ took 8-10 anti-seizure pills a day for over 3 years. The blood test confirmed the clinical diagnosis. TJ was immediately put on antibiotics and steroids while being weaned off all the other medications. Within a week there was a difference. After a month the “old” TJ was shining through. A year later the “old” TJ is back with some “new” stuff.
At this appointment the doctor explained two things to me. One, never let TJ have a flu shot as he could have serious adverse neurological side effects. Two, don’t be alarmed with regression as sometimes, a PANDAS/PANS child will have improvement and symptoms will reappear for no apparent reason. Against the advice of TJ’s regular doctor, I chose not to give him the flu shot that year. I had to go with my gut and with the advice of this doctor because for the first time since this started a doctor had a reason and a solution. I had to believe him although some of TJ’s regular docs told me that I just found a doctor to tell me what I wanted to hear. Another doctor told me if you tested for everything you would find something to treat and there was nothing wrong with his blood work.
After Christmas break TJ started to attend school as a home school student, attending two classes a day. Everything was going smoothly until a day in February when I picked him up from his first class; he looked dazed and said he felt tired as he was twirling his hair. Once outside, he started skipping like a little boy but he is an 8th grade boy. He said he didn’t want to go back to school but after some talk and coercion he was able to go back to his 2nd class with my promise that I will not leave the school parking lot. I sat in my car crying, knowing that this must be the regression the doctor told me about. Within a few minutes the school nurse told me I needed to pick up TJ because something was wrong. I told her I would be right in. She couldn’t understand why I was still just outside and scolded me in front of TJ saying that he was never going to get better if I kept coddling him. By that night EVERY symptom came back. It was the longest day and night. I started him on the Augmentin that I had “on hand”. As quickly as the symptoms reappeared I could see them disappear. By Friday he was back to attending his classes with some residual anxiety.
Now a year later, TJ takes a small pill each day to ease his anxiety, attends school full time with minimal issues, is able to participate in sports again (coaches have remarked how nice it is to have the old TJ back), volunteer with special needs, and participate in peer activities (ie school dances,etc.). He actually reminds me, especially when he is a “normal” teen… “Mom this is what you wanted. I am just being normal”. How can you argue against that!!
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