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Hi- this is my first post on this forum though I've been reading and following to try to figure out the puzzle of my my son's behaviors. He's 9 and was diagnosed with ADHD and anxiety, and sensory processing disorder with a neuopsych when he was 6 though behaviors had been around for many years starting around age 2. He was also diagnosed with Periodic Limb Movement Disorder at age 6 after a sleep study. Recently he has shown new "tic" behaviors like repeating swear words words over and over (under his breath) and making repetitive sounds. We are seeing a new doctor and he ordered a test for PANDAS. His strep titters came back as 382. He took a five day course of amoxicillin -the tics do seem lower but his frequent rage issues continue to increase by the day, as well as extreme irritability and defiance, temper tantrum and emotional reactions. On top of this is a craving for and or /refusal to eat many foods and chronic constipation. We tried a two week trial of gluten free followed by 2 weeks of dairy free. Dairy free seemed better but very difficult because milk is what he craves. He has poor weight gain and has fallen off the growth chart. His sensory behavior has increased and he can only have very soft materials touching his skin (takes off clothes and wraps himself in a blanket whenever he is at home.) He is taking foculin xr, Kapvay and Prozac. We are stopping Prozac in 10 days to see if that helps. He also takes Zyrtec for seasonal allergies and miralax. We just restarted iron supplements for PLMD as his serum ferritin levels are at 30 (way below the 70 his doctor would like to see.) I'm wondering about the connection between ADHD, PLMD, anxiety, SPD, PANDAS and digestive/growth issues. Does anyone have a child with a similar profile? Thank you for your help! -
Hello everyone, I'm 19 years old an have lived with an undiagnosed illness for eight years. Over the years, I've been given many different labels to describe the symptoms, but I've always felt that there was a deeper cause to explain them. Right now, the labels are OCD, Periodic Limb Movement Disorder, and suspected narcolepsy. My current symptoms are severe daytime sleepiness, fatigue, mild cataplexy, occasional hypnogogic hallucinations, multifocal myoclonus when I stop fidgeting, mental fog/concentration problems, intrusive thoughts, and recurring depression. I've had every blood test imaginable, and they have always come back normal—until now. I had a Cunningham panel done in December with the following results: Dopamine D1: 8000 (normal range: 500-2000) Lysoganglioside: 320 (normal range: 80-320) Tubulin: 4000 (normal range: 250-1000) CaM Kinase II: 114 (normal range: 53-130) They had a shortage of the reagent for D2, so I don’t have those results yet. How do I interpret all of this? The report didn’t say anything. Also, blood work I had in March that tested for inflammatory markers came back normal. Unfortunately, none of the numerous doctors I've seen lately have known what to do about my numbers, and I don’t know what to do anymore, either. After eight years, my symptoms continue to worsen, and I’ve had enough. I had no health issues until a sudden illness at eleven that started with extreme fatigue, which is very suspicious to me. I've been researching on my own, and from what I can decipher, elevated D1 antibodies (which I have) are associated with OCD, Narcolepsy, and PLMD. Can anyone confirm this? Have any of you with PANDAS diagnoses also had Narcolepsy or other sleep disorders? Although I’m almost cured of OCD compulsions thanks to ERP and CBT, my other symptoms are debilitating, and I don’t want to be sick for the rest of my life. Do you know if any of the treatments for PANS or PANDAS can help with the fatigue and narcolepsy? And is there any point in antibiotics or IVIG after having this for so long, or is the damage to my brain likely permanent? Any words of advice you have are very much welcome and appreciated. I know you’re not doctors, but I’d be curious to hear about any of your similar experiences and anything that has helped. Thanks!