Mother reports her son first showing symptoms of PANS when he was 10 years old. We did not know at the time it was PANS. He had severe allergies all of the sudden and then school refusal, and an obsession with suicide-he desperately wanted to die.
We treated it as a mental health issues for a year-psych meds and CBI (cognitive behavioral therapy). It did not help much. In November 2014, he fell apart again, he became suicidal, refused to go to school, and pretty much had every symptom of PANDAS/PANS in the book. Would rage in car and try to jump out of moving car.
We did not learn about PANDAS until February of 2015. By then, he was hallucinating, having seizures, and raging out of control. We tried antibiotics, steroids, IVIG, PEX and they only worked a little to calm the rages but did not last. In November 2015, we did Rituximab. He has improved dramatically-no more suicidal ideation, no more begging to die, no more rates or hallucinations. He still has extreme sensory issues, anxiety, and OCD. He will not put on clothes or leave the house and he will not communicate with anyone but myself, my husband and my daughter. He spends most of his time in his room and refuses to take any medications.
Mother reports during intake that he was sent to a new school. He was bullied at school. Some kids kicked him so hard it left a bone bruise and he was on crutches. He was moved back to his previous school after the bullying incident.
Once PANDAS hit, he had allergies to milk, wheat, oat, corn, soy, nuts, meats. We did an
elimination diet and he felt better.
His OCD is so bad, he won’t leave the house. Fears “something bad will happen”. Can’t be in public. Only speaks to mom, dad and sister. He will play online on playstation and talk to one of his cousins. He will face time one of his therapists but only a few minutes. His therapist suggested this was a neurological issue.
Control, stubborn-always has been.
No one allowed to visit us. Locks himself in room if people come to see us.
Can’t be in public.
Used to have urinary incontinence-gone now
Tics-squinted right eye. Had a tongue tic. Nose scrunching tic.
During a bad flare, everything tasted bad, couldn’t swallow food, everything tasted like sand.
** Won’t drink water. Obsessed with apple juice and sparkling apple juices and milk.
During a flare, no affection, no talking
Throat clearing tic
Hallucinations: demons will kill mom and family if he loves them.
Nightmares: Being murdered, house on fire and died, demons, mom wasn’t really his mom, she was a demon
Self injury behavior: bang head on wall, tried to choke himself to death, ran into traffic, would jump out of moving car
Always has had sleep issues. We rotate Benadryl, melatonin, brain wave rhythms, xanax
Previous psych meds:
Always HOT. Fants always ON. Doesn’t like light. Would be in the dark all the time if he was allowed. He doesn’t sweat. He doesn’t like to sweat. For a long time he would not shower or brush his teeth. Even though he didn’t shower he never smelled bad. He is sensitive to smells and touch. He says he feels like he has a thin coating on his skin. Touching cold smooth surfaces feels good.
He likes glass. He won’t wear clothes. Always in underwear. He has 1 specific blanket he will use. He has always had this blanket.
Happy, Sweet, cuddly child
Emotionally in tune, empathetic
Stood up for the little guy
Stood up for kids being bullied
Athletic-committed, in a strategic way
Very outcome driven
Upset if he didn’t win
Hard on self
Lots of pressure on self
Did well in school without a lot of effort
Things came easily to him
If things were hard, he didn’t want to do it
November 2015 Rituximab (chemo drug) used to suppress immune system and shuts down all B cells and is used to reset the immune system. No more hallucinations or seizures.
His strep tests were negative. ASO were elevated. Negative Lyme
Sees Dr. Latimer. Doesn’t recommend any further treatment since Rituximab.
C. B was given remedy Twice a week.
Follow up was 2 months later.
We are AT the BEACH. We traveled 5 hours in the car and my son came to the beach.He has shown slow and gradual improvement since starting his remedy.
Last year she had to stay home with him while everyone else went to the beach. He agreed to try the beach for a few days. He did great on the car trip. NO trying to escape the car. He went to the beach and got IN the water in the ocean. You can tell he is still anxious but he pulls it together. We went to the crab shack and had dinner out. There are 5 families with us at vacation in the house.
He is showering daily and brushing his teeth.
Wants to be busy all the time. Needs to be busy. Constantly wants to be in the beach water.
He’s playing basketball now.
Drinking water with Lime in it. He is drinking TONS of water.
We are around a LOT of family at the beach. He is eating whatever everyone wants for dinner. Not as controlling about his food he eats. Likes to have cooked healthy food. He loves watching the cooking shows.
He’s been seeing his therapist but has issues talking with her. Therapist suggested pokemon go. He got a phone so he could pay and get outside more. He was resistant at first but now he is at the beach he is enjoying playing.
He has not gotten sick.
He loves to cook. Thinks a lot about foods that will be healthy.
Throat clearing tic is still here. It is worse after drinking water.
He is sweet. No more intrusive thoughts No outbursts. He is relearning and re-engaging in things he didn’t get to do before when he was sick. His seasonal allergies are flared.
C. B continues to have slow and steady gains. Mom will follow up as needed.