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Found 2 results

  1. I have been a constant reader and researcher on this wonderful forum, but this is my first post. I will give a quick,(I'll try)abreviated history. DS8 was a happy healthy baby, with an easy, sweet disposition. At around 18 months he started to get repetetive strep infections. I also about this time rehen he was about 2 and 1/2, I got call from his daycare, he was stubling and couldnt walk straight. Immed took him to ped, who had him walk up and down hall looking like a drunken sailor. Sure enough,had strep. We were leaving for family visit to SF on plane, and voiced my concern about never eradicating strep andasked for antibiotic shot, which was given. We got on plane,and from that point for two days straight, he was "out of his head" yelling and irritable. I thought it was plane, strep and travel. I was just about to take him to Standford ER, but finally fell asleep. He seemed to be a bit better thenext day, but I realize now and kick myself- that he probably had encepholitis or meningitis. And it was from that point forward that things changed and continued to. When we tried to sched tonsilectomy asap, we couldn't get go-ahead b/c his pts and ptts and some other numbers were off- they sent us to specialist, tested for leukemia, lymphoma, von wilds, etc. Finally gave us the go ahead, said that repeat infe tions can cause autonomic system changes. Had tonsilectomy, actually seemed back to normal, and speech started to finally take off a bit. But then started to backslide. Seemed to always catch things, pre-school teacher said he wojkd sometimes just fall out of chair, had moments of spaciness, and would know things one day but not next. Took to neurologist who tested for fragile x, and some other rare syndromes with no results. Other things started to happen,but in vague or inconsistent way. He would complain his legs and arms hurt,he was exhausted, falling alseep mid day and always having accidents, started walking on toes. Age 5- he started his eyes started to not track together, personality changes. Age 6, major disposition changes, new adhd,super super sensitive to light and sounds,can't stand smells of food he used to love eating, falling apart and easily agitated.Also notice a gasping/croupish cough at night, sweating out. He is slowly falling off cliff and I can't stop it. I always thought evthing had something to do w/that repetetive strep, stumbling,and pt and autonomic dysfunction. Come across pandas. Nexttime he is really off I watch...emotional wreck, obsessive, wets bed,throat hurts. Strep positive! Thinking pandas- see dr.b, agrees
  2. My seven year old daughter just tested reactive for B. burgdorferi with two bands, 41, 58 on the western blot on 6/4/13. Our Pediatric infectious disease Doctor Sharon Nachman prescribed 21 days of Doxycycline Monohydrate and a referral to the best pediatric neurologist in our area Dr. Marsha Bergtram. We believe that my daughter contracted b. burgdorferi by a tick bite the end of January 2013. The tick was sent away for pathology and came back negative for b. burgdorferi, so I thought she was in the clear (false negative or she was bit by another tick that we never saw). The beginning of March she presented with a few days of fevers, (they would last 24 hours, resolve them come back a week or so later), complaining of growing pains (body ache), headaches, her right jaw hurt, sores in her mouth, a loss in her hearing (put the TV up so loud), but more dramatically a cognitive change since the end of March. She has been reading since she was 2 years old and has always been a talented gifted student. List of what we have noticed: Memory loss, she frequently is forgetting what we did, "I did not eat dinner, what did I eat for dinner."Problems pronouncing words that she knew how to say correctly or making basic counting mistakes. She did not know what road we were on and it was the end of our own street. She has been making poor judgment climbing things acting more like a 4 year old, needing to be reminded that it is not safe to walk on the ledge of the fence in the back yard or climb on the outside of the stairway railing. She is forgetting the names of her new toys, so she writes notes to herself of their names and how they like to play. She is playing differently, she only wants to play with these new toy's that she writes notes about. She is "relying on Brynn in the morning," (her words) her 5 year old younger sister to help her when I am sleeping. She became dizzy, walking funny then hit her head on the bus. She has had some behavioral changes since the day after Easter Crying a lot for no reason is a new behavior. Waking a lot in the night for bad dreams and wanting to sleep in out bed is a new behavior Playing by herself on the playard at school instead of with her friends that like her. Has been anxious and worried (new behavior) that she will loose me. Loosing her school work, getting upset and it turns out to be in her backpack. The Swedish research on lymphocytic meningoradiculitis, Bannsworth Syndrome (referenced by Dr. Nachman) recommendations for treatment with Doxycycline Monohydrate is not indicated for children ≥8 years of age, but she is allergic to Amoxicillian so they went forward with treatment. The research shows that in adults Doxycycline Monohydrate can be an effective treatment for the b. burgdorferi and also against other co-infection tick pathogen human illnesses, such as Bartonella Bacilliformis, b. henselae, b. quintana, ehrlichiosis, but for pediatric neurological presentations with b. burgdorferi in cases >9 years of age a third generation cephalosporins, IV ceftriaxone was more effective then Doxycycline. However Doxycycline is not an effective treatment of b. microti, b. ducani, Babesia or Babesia FISH. Their treatment is usually with Levofloxacin or Atovaquone combined with azithromycin. US National Library of Medicine National Institutes of Health http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1032595/pdf/jnnpsyc00559-0001.pdf http://www.ncbi.nlm.nih.gov/pubmed/3070690 http://www.ncbi.nlm.nih.gov/pubmed/1606475 http://www.ncbi.nlm.nih.gov/pubmed/7847012 http://www.ncbi.nlm.nih.gov/pubmed/2782858 http://www.ncbi.nlm.nih.gov/pubmed/3056201 http://www.ncbi.nlm.nih.gov/pubmed/16012005 We had three good doctors appointments here in NY this week. • Pediatrician Jill Creighton, Stony Brook hospital • The head of the pediatric infectious disease department at Stony Brook, Dr. Sharon Nachman, • Dr. Marcia Bergtram, pediatric neurologist, Hyde Park, NYC several hospitals. The infectious disease doctor confirmed the Lyme exposer and the neurologist believes that my daughter has the equivalent of P.A.N.D.A.S But instead S for strep, she most likely is being affected as P.A.N.D.A.L for L. Lyme.
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