My son is an amazing, passionate, sweet, sensitive boy. As a baby, unlike our daughter, he had low energy and always seemed a little down. At about 7 years old he began having rages in his room, throwing things and screaming. A Neuropsychologist diagnosed him with anxiety. In subsequent years, other symptoms began to arise: vocal and motor tics, obsessive thoughts, and his moods were all over the place, from depressed to manic at times. I was sick in my heart that at 7 years old he was receiving therapy for depression, anxiety, OCD, and emotional lability. Other changes we noticed, but didn’t realize at the time were PANS symptoms, were the urge to urinate frequently and unusual gait. One of his OCD manifestations was the compulsion to confess trivialities. Two different neurologists diagnosed him with Tourette’s syndrome. It got to the point where the therapy wasn’t enough: he started talking about hurting himself; his self-esteem was low and wasn’t making many connections with other children. Some of his journal entries included the following:
By the time he was 11, my husband and I reluctantly decided the time had come for him to start medication. We were hesitant and afraid, but were willing to do anything. His Neuropsychologist was familiar with PANDAS and referred me to a Psychiatric Nurse who treated children with PANDAS. At the time I really didn’t think he had PANDAS because everything I had read stated that it had to be an abrupt overnight change and his symptoms seemed mild in comparison to other children. I did not realize that his “abrupt” change could have happened back when he was 7 and having his rages. The Psychiatric Nurse met with my husband and I for two hours and then with my son for an hour and a half, asking all kinds of questions, trying to figure out the big picture. She was a Godsend. Based on those interviews, she chose to do further blood work as well. At this point my son had never had pneumonia or strep throat. His test came back very high for Strep and for Mycoplasma Pneumonia. His Lyme test came back negative. I did not realize at the time that the routine Lyme testing often comes back as a false negative.
TREATMENT & FURTHER TESTING
The Psychiatric Nurse put him on antibiotics for the Strep and Pneumonia. She also put him on different medicines for his moods and eventually for his tics. He really wasn’t getting significantly better and by the time he was 12 he was threatening to kill himself. One late afternoon I found him in his room with a self-made noose loosely around his neck. My beautiful boy was threatening to kill himself and I was afraid to leave him alone. I took him to a psychiatric hospital outpatient program for a week which helped him get his emotions under control and give him some coping strategies.
About nine months ago his Neuropsychologist felt because he wasn’t getting significantly better we were missing something. She pushed me to get him tested for Lyme again. The test through Lab Corp revealed he did indeed have Lyme. We then brought him to an Integrative Medicine doctor who specialized in Lyme. He pushed us to run a full Igenix tick born infection panel, as it is even more sensitive so has less false negatives. In the past we had considered the Igenix panel but knowing one can still get a false negative due to the Lyme hiding in your system and because test can cost $1,000 out of pocket. The Igenix testing reconfirmed he not only had Lyme but two co-infections as well, Ehrlichiosis and Anaplasmosis. If we had let the cost of testing dissuade us, we would not have discovered his two co-infections, which require different and specific antibiotics to eradicate.
He is now thirteen years old and is on various antibiotics, psych meds, supplements and on a specific diet.
Anti-Bacterial & Anti-Parasitic Medicine: Zithromycin, Amoxicillin and Tinidazole. He may go on Doxyciline now summer is over and at less risk of sunburn.
Psych Meds: Clonidine for tics and Quetiapiane for anxiety and mood. The initial psych meds he was put on made him manic.
Supplements: multivitamins, A-L complex (herbal mixture), A-Bio (herbal mixture for anaplasmosis and ehrlichiosis), Transfer Factor (for immune support), Magnesium Citrate and Blue Heron (for constipation), Probiotics, Lithium Synergy (for mood support). He may try Cowden Protocol.
He is now on a gluten, sugar, and dairy free diet but he still eats grains. When his Integrative Medicine doctor insisted on this diet, I really did not think he (or I) could do it based on our family culture around food. Ultimately we had no choice but to put him on this diet. The doctor told us that he would not see him if he didn’t change his diet. There were arguments, tantrums, and grieving, but in the end it was truly a blessing in disguise. My son is a rule follower so sticks to the diet well. But it still is difficult since he does not like many vegetables, fish or chicken so we are not adding a lot of new foods in. Initially we were unsure if this diet was actually helping him but then we went off the diet for two weeks while we were away on vacation. Within those weeks, he again started perseverating, crying, and had increased in both depression and tics. This was not what this family of six needed after a much anticipated family vacation. I was so overwhelmed until I called my friend who reminded me to give him Motrin. Decreasing his inflammation through Motrin has always helped him. That was when we realized how important keeping his inflammation low through diet and Motrin is.
NEXT STEPS & SCHOOL
Unfortunately his Integrative Medicine doctor’s practice has closed. He is scheduled to meet a new Lyme doctor who is well versed in PANS. With the start of the school year I am again seeing his anxiety skyrocket. The anticipation of his homework causes him to cry for hours when he gets home from school. I also see returning intermittent periods of depression. I have contacted the school about getting him on a 504-accommodation plan to reduce the amount of homework and to have him take tests in a separate location from other students. Last year, in school and on Instagram, he was teased about his tics, making him self-conscious in the classroom, further decreasing his self-esteem. It has come to the point where we are currently exploring a private, more tolerant school.
THE EMOTIONAL TOLL
PANS can affect the whole family and marriage. When my son has anxiety, the stress levels throughout the house go through the roof and my patience is tested time and time again. Unfortunately this carries over to when I deal with my other kids and their problems. I have no more energy or patience left for them. At times I am patient, loving, kind, and supportive of my son. At times I am done; I can’t listen to it anymore and need to remove him or myself from the situation. I get pushed to the limit, to the point that I can’t hear any more incessant whining, crying, or yelling or I will lose it myself. Then an hour later my son is happy. Once his anxiety has passed and he is singing or playing outside, I sit inside the house feeling as if I have been beaten up. I can’t seem to recover as fast as he does. At times my husband feels I am enabling our son by hugging and loving him when he is anxious as well as giving him special allowances based on his moods. While trying support him, I am constantly dancing between being enabling him and giving him his wings.
Having a child with PANS puts a strain on a marriage. The entire family is stressed and at the center of it all is the PANS child in yet another crisis. The time spent on going to doctor appointments, working with the school, keeping all of the paperwork organized, and advocating for your child is physically and emotionally exhausting.
I debated writing this family story feeling that it is mild in comparison to other stories I have read. I think it’s important to realize that one person’s mild is another person’s earth shattering. It is hard for me to even think that I would call this mild when my son has threatened to take his own life. The symptoms and severity of PANS/PANDAS run the gamut. My best friend told me once, something that I never forgot, “You are only as happy as your unhappiest child.” I am sure most, if not all, of us feel the same way. Our family’s hope is that he gets these infections out of his system and is able to find happiness and peace once again. We pray for the day that he loves himself and feels great about the wonderful young man he is.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!