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hi, my son, now 22, diagnosed with lyme and rocky mountain spotted fever in Dec. 09. Been treating every since but he has only gotten worse, all neurological, nothing physical. Recently positive for babesia in 2012. Again, still treating. I've been trying to research anything that might explain why his neurological symptoms are getting worse and now I think just maybe PANDAS is it. I had a strep infection a couple of months ago so they checked him out. Our family doc put him on amoxicillin for 10 days because she said his throat looked red (his culture came back negative). When I mentioned this to his LLMD, she did blood work and his ASO titers (strep infection, yes?) is very high so she put him on Moxatag for the month. In looking back thru years of blood work, I notice his ASO numbers have always been high. My son did have episodes of OCD about 6 months after being diagnosed with lyme. He's even worse now.....his main symptom is uncontrollable laughing, been doing it since 1st diagnosed but its gotten worse over the years...now its constant all day and into the night. None of his docs can ever figure out this symptom or seem to give us anything that's helps. Now getting to sleep is terrible, every night its a challenge. Some docs we've taken him to have said schizophrenia but others, including an "expect" in this field said no. He's so "lost and confused" that we can't ask him any questions, he can't answer us...he only says 1 word phrases and even those usually aren't the appropriate response to our question. I don't know much about PANDAS...is there hope? cure? can he get better? or is this like lyme, treat and pray? ANY help would be greatly appreciated, we just don't know what to do anymore thank you His Mom
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Hi, My 6 yr old son has a mild case of PANDAS for two years now. Last September we put him on prophylactic weekly zithromax because his ocd and rages had gotten more severe. All of his symptoms diminished almost immediately and he had a really fabulous winter, almost no signs of pandas. Then about 2 months ago he started having hyperactivity after getting his oral suspension (red liquid) zithromax, to the point where he said, "mom, I can't stop my body!" So, then I gave him a med holiday to see how he would be off of the zithro. Within 2 weeks a new tic started. Then we all got sick and he flared more (4 behavioral meltdowns in one week). He took some zithro for 3 days thinking we all had mycoplasma and found that he could now swallow pills. So, his behavior is pretty good, maybe some sensitivity 2-5 times a week, not full tantrums. However, his tics have increased in type of quantity. But no one hardly even notices them, not even him. But they exist, just watch him closely for 5 minutes and you'll see the repititions. Oh, also not sleeping well, bad dreams, peeing in bed at night. So, my question is should I put him back on a weekly oral pill of zithro or do we just tolerate all of this since it is quite tolerable. I understand that the zithro is used more for its immuno-modulation than for its antibiotic qualities. I just don't want his basal ganglia inflamed and causing him these mild discomforts. And I want his body in a neutral place. So, meds or no meds..... maybe for some weeks until we're more into summer and school is out so less germs around??? thoughts? -
HI I just heard a doctor talk that stated the geoengineering program in place (denied by many, but just look up at the trails in the sky OR do research at bariumblues dot com and make your own conclusions), that the aluminum in the spraying goes straight to the brain, thus the explosion in autism and pandas. Has anyone tested serum aluminum in their kids? Thanks
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Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. That improved things and the only thing that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet and diflucan and probiotics Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned.How long till Prednisone is flushed out of my son's system? And will his tics subside (or are they now at a "new normal")? Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics?I've read that TS is usually inherited and there is no neurological conditions that exist in our family - or even the extended family...so if this is TS then it is extremely strange...any thoughts on this? I forgot to add that we did Lyme testing through IGeneX. Here is what we got... IGenex TES : NEGATIVE CDC / NYS TEST: NEGATIVE 18 KdA -- **23-25 kDa -- 28 kDa -- 30 kDa -- **31 kDa IND ** 34 kDa -- ** 39 kDa IND **41 kDa ++ 45 kDa -- 58 kDa + 66 kDa -- ** 83-93 kDa -- Does this indicate Lyme? Is it possible that his tics are also worse because of die-off (herx) reaction? Your help and advice is much appreciated.
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Hi I have a 7 year old. Last year in November, he developed some vocal tics. These eventually evolved into coprolalia. He was put on guanfacine, zolofot and risperdal. Ever since, he has been much better and the only thnig that remained were some grimaces. In an attempt to eliminate his tics and move away from these powerful drugs, we've tried a whole bunch of alternative treatements and dietary changes. - put him on a gluten free, dairy free, reduced sugar diet. - We have him on a bunch of supplements - Ca, Magnesium, Methionine,etc. - for a while, he was on a very strict, candida free diet and diflucan and probiotics Given that all of the above did not get rid of his grimaces, our suspicion turned to PANDAS. We spoke to a Pandas specialist and now have him on a dose of antibiotics with a steriod (prednisone). Three days into this treatment, we noticed a significant change in his behavior - a lot of rage and frustration. After about 5 days, we also noticed that his vocal tic had started to come back. Today is the 6th day, we've stopped prednison (after reading online that it is a significant tic triger). His grimaces are much reduced but his vocal tic is back and we are besides ourselves. The nightmare has returned. Has anyone experienced the above before? Are his vocal tics really prednisone or just a herx reaction - is this just a strep die-off?Could his tics be the antibiotics? Your help and advice is much appreciated.
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I just this weekend read a book that some of you may find very interesting. I don't even know how I found it on my Nook but I am so glad that I did! The book is Brain on Fire-My Month of Madness by Susannah Cahalan. It is a memoir written by a 24 yr. old NY Post reporter, a true story, about her medical mystery which turned out to be an adult (and extreme) version of an autoimmune storm similar to PANDAS/PANS resulting in brain inflammation. Started with mild ocd and fast-forwarded into full-blown psychosis and hospitalization. Fortunately, a wonderful doctor from University of Pennsylvania found the problem after NYU Medical Center contacted him for help. IVIG and plasmapherisis and steroids saved her life just before she was totally lost. I love to read and never have enough time to but I accidentally stumbled on this and read it in less than 2 days. I am so happy to know that there are doctors out there who are recognizing the brain inflammation/autoimmune aspects. As she points out in her book, how many people have been committed to psychiatric institutions or written off as 'mental' or 'autistic', when it is actually brain inflammation? So glad I stumbled onto this book!!!!