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Dr. N patients and treatment?
Guest posted a topic in PANS / PANDAS (Lyme included)Hello, I'm looking to hear from some patients of Dr. N. I already talked with one user (thanks) but my mom wants me to talk to some more people. My psychiatrist is referring me but not sure if I'll be accepted or not. I wanted to know if his treatment is individualized per case by case basis? I ask b/c PANDAS treatment can actually conflict with Myalgic encephalomyelitis (M.E.) treatment. I.E. I know several M.E./CFS patients that were put on steroids and have been bedridden ever since (not good to suppress our immune systems as we have tons and tons of chronic infections and a very faulty immune system), I also have a CFS friend who did IVIG and was bed-bound unable to even lift her head for 6 months. I was just wanting to know if he would be able to look at everything as a whole when deciding on treatment and if he would be investigatory into my very complex and debilitating case? The new theory coming out about CFS is that the entire vagus nerve is infected (they found this with a patient who passed in the UK), I just really need someone who will try and figure out what the heck is killing me and has been for the past 10 years. Also, I've never seen a good neurologist (only one local who was terrible) so I'm hoping for sleep investigation as I can't hardly sleep at all now and haven't for 5+ years. (I take melatonin, zyprexa, zoloft, loads of klonopin, pro-gabba, and magnesium every night with little benefit or help). I've tried pretty much everything for sleep including the very expensive xyrem only fda approved for narcolepsy. Thanks for any info as related to Dr. Souhel Najjar (seems like a fantastic physician!)
tu4four posted a topic in PANS / PANDAS (Lyme included)Hello, mamas (and dads, and grandparents, etc!). I haven't posted anything for a long time, possibly because I haven't seen any new hope, any doctor that is willing to help, and our funds to travel to our doc have run out. Our most profoundly affected child (15) has continued to be super irritable and moody. She has been officially diagnosed with bipolar, asperger's (asd) conduct disorder at best, borderline personality disorder at worst. She has been out of the psychiatric hospital for 2 days, and as if that wasn't enough, my ds11 has now been in a flare for at least 2 months with 4 weeks on Zithro. This time I am not seeing him come back to us, even on zithro. Poor baby girl, dd7, is the youngest, who at this point only deals with phobias, "monsters" but no anger issues. So here is my question....we have an appt for my dd15 with a rheumatologist/neuro who is on the autoimmune alliance's website. He has worked with this a lot, apparently. I know these kiddos are dealing with brain inflammation. Dd15 had a lumbar puncture with a high opening pressure, but neuro didn't bother to test for any antibodies even though I asked him to. Dd15 and both others have had high thyroid antibodies, and we have a list as long as my arm of relatives with autoimmune issues, including one great aunt who had a very large goiter (makes me think Hashimoto's thyroiditis). This great aunt lived with her mother her entire life and was considered "not right" by family. My mom thought that she was just what they called "mentally retarded" back then, which could have been a lot of things. Anyway, I am looking for any other ideas on what to stress with the doctor so that we don't miss the mark with this one. This has got to be the answer. Since dd15 has been home from the hospital, she has been sleeping a lot. She was sleeping a lot before she went in, but we thought it was because of the antidepressant. She has been off of that for a while now and is still very fatigued. She went into the hospital because of a manic episode (I think brought on by the antidepressant). During that episode, she became obsessed with the phone and contacting several people that she didn't know. She took my phone before the password came on. When I tried to take it back (I couldn't let her continue to do what she was doing), she became very strong and relentless. When my husband walked in the door, she had me trapped by the hair, had kicked her brother in the groin and had kicked her little sister against the wall. Today, my son, who has lost his beautiful laugh, has had behavior very similar to dd15. He has screamed at me and yelled and verbally threatened just like her. Last night, when he was fairly calm, he lied about things that didn't even benefit him to lie about. This has been going on for some time. They both have had high tests for hhv6, etc. I know this is all due to inflammation. I just don't want to miss anything that will clue the dr in. Any other thoughts? thanks
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!
Sports and tics
pasquale61 posted a topic in Tourette Syndrome and TicsMy 9 year old son who has suffered on and off with various tics for years now shows a marked increase in tic frequency during his sports activities. He plays quite a bit of organized baseball and basketball. Maybe he's nervous or anxious or feels pressure. If so, would that cause his tics to wax? I notice the tics start to increase in the day or two leading up to a game or practice. Than the frequency peaks during the event itself. Its usually in the form of an eye blink or eye roll, or sometimes a stomach or abdominal type crunch. Its tough to watch. I get so sad and quiet. Has anyone experienced this with there child during sports activities? If so does anyone have any thoughts on how to ease his angst which I'm assuming is the culprit.
Ok, medical detectives, I need some assistance... DS, 14, suffers from daily fatigue. He has an adenotonsillectomy scheduled for November 4th that the ENT thinks will help with PANDAS and will help with breathing, sleeping, fatigue, etc. DS, 14, started 8th grade wrestling yesterday. This is his first organized sport ever and he seems very excited about it. That being said, he hates to lose EVER-AT ANYTHING-FOR ANY REASON. I don't know if that is genetic, pandas, or an unhealthy combination of the two. My husband and I are both very competitive. On day 2 of practice, he lost in a drill and he was crying and very upset. He could not be consoled and was nasty the entire trip home. Coach met me at the car to talk about it-JOY. I gave him an apple with peanut butter, he took a shower and is much calmer, but horribly tired. DS was dripping with sweat and said he was starving. A few other times in his life he has been downright ugly and nasty tempered when he has not eaten on a somewhat regular schedule. Usually an apple with some peanut butter will take the edge off until he eats a regular meal. At one time, an endocrinologist said he had Metabolic syndrome and prescribed Metformin. He took for two months and no noticeable results. Dr B, who was immunologist at the time, said he didn't need it, that he did not have metabolic syndrome. His blood sugar always tests in the normal range. DS, is 5'10 and weighs 215; his shoulders are as broad as a linebacker's. He has recently lost 7 pounds on his own by doing elliptical exercise. What am I missing here?? I plan to send a snack for him to eat between school and wrestling practice. Will the adenotonsillectomy help with the fatigue? Again, what else can we do?