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Found 7 results

  1. Hi All, I have a quick question regarding anorexia presenting as a possible symptom of Pans/Pandas. My anorexia appears to be non-specific, i.e not fuelled by any underlying psychological motive. Is this presentation typical of Pandas/pans? I've heard of the classic type associated with body image distortion - nervosa. There is also a type characterised by a "fear of choking" which I'm sure is relevant in the context of OCD. But for me there seems to be no underlying reason, it's as plain as simply going off my food. It sounds non-sensical; if anything I have a fear of looking too thin. although, there is no appetite during a symptomatic phase. Any input would be great. Thanks.
  2. Hello, all. I joined the forum today and skimmed messages for our issue. I have a 17 yo daughter who is positive for lyme, bartonella, and babeisia. She is in treatment for those as of April and also has an eating disorder that she began treatment for in September of 2016. I am desperate to connect with anyone who has had the two illnesses as her ed psychiatrist does not believe that she has the tick infections and she is herxing bad (increased eating disorder and other symptoms.) Decreasing the antibx will not stop the restriction cycly. Her llmd does not fully understand the eating disorder and we are headed for a major hospitalization when she becomes medically unstable. Thanks. Amy
  3. Our 12 year old son was just diagnosed with PANDAS/PANS after being diagnosed with anorexia this summer (the anorexia was a symptom of the pandas, we learned). We discovered that it was not "just" anorexia because as the re-feeding process was underway without much resistance from him, a whole host of other symptoms arose leading to this diagnosis. His primary symptoms now are extreme anxiety/mood swings/rage in addition to some physical symptoms that the doctors have observed. Has anyone else had their child's diagnosis begin with anorexia and/or have experience with extreme episodes of rage, particularly targeted as hatred (to the point of phobia) for a parent? Thank you.
  4. Hello, my 8 year old son, mild/controlled pandas for 4 years, on August 6th had 3 pins (like nails) were yanked out of his healing humerus (had broken upper arm bone 3 weeks prior from monkey bars fall) by ped orthopedic surgeon. He was sedated with nitrous oxide and versed. He takes prophylactic augmentin daily and a weekly Zithromax dose for pandas. The next day he began a new and severe flare with food refusal. Working with dr. T. Many labs drawn, changed to cefdinir and Zithromax daily, no help. Now will try valtrex and biaxin. Forcing son to eat/drink, he lost 5 pounds, now 70 pds. Not currently dehydrated, eating between 500-1000 cal/day under duress. C/o nausea, fear of vomiting, swallowing difficulty. Also poor disposition: grouchy, won't go outside. In the 6 mo prior to arm break he would get a breakthrough pandas flare from skinning his knee or any break in the skin (bug bites). In the last 2 weeks of this yucky flare I notice he improves after he eats a treat with dark chocolate. Now I'm thinking caffeine, histamine, mast cell, etc reaction to having the pins pulled. But I have trouble wrapping my brain around this concept. Can't reach dr. T yet. Can any of you school me in how this works? The histamine, mast cell, inflammation, genetics, mthfr..... Labs, diagnosis, treatment.... Thanks so much.
  5. Hello! Long time lurker, first time poster, mom to a 6.5 y/o PANDAS boy with a question about food restriction/anorexia. I've read a lot here (esp from beerae22 who seems to have been on a similar journey with her DD) and it's been soooo reassuring to know that we're not the only ones out there dealing with this. In a nutshell, DS had an abrupt onset of typical PANDAS symptoms in February 2014. With prompt antibiotic treatment (mostly Rocephin injections - he would take nothing by mouth), most symptoms went away (or decreased so that his level of functioning was no longer greatly impaired). The only residual symptom was the severe food restriction. At the worst point, DS would only consume McDonald's vanilla milkshakes (no toppings! perfect temperature!) and popsicles. Thankfully, I was able to find a paper online that had been co-authored by a doctor who works at an eating disorder clinic within driving distance that treats "food phobia." We got him into their partial hospitalization program in July where he was on a moderate dose of olanzapine and a feeding tube was placed. After about a month, the program did its "magic" and DS was eating like a little piggy! He gained 10 lbs during August! During the past few weeks, we've seen him starting to restrict again. Things really amped up after a relatively mild virus (a bit of vomiting and fever for ~24 hours then diarrhea for a few days). He's eating practically nothing during the day, and has stopped eating several staple foods. While he is still doing the "bite, chew, swallow" and eating solids and crunchy foods, the tics (which mostly happen while he eats) are back in a big way. He's getting messier (before treatment he would take a bath after he ate anything) and eating less in quantity. I'm getting scared. His pediatrician has him on Zithromax 500 mg three times a week as strep prophylaxis. I'm going to contact the doctors at the eating disorder program (one of whom knows Swedo a bit) to see if they can recommend someone but wondered if the parents who've been through this can offer any advice or tell me what worked for their child. In my mind, we could try different antibiotics (he won't swallow pills - grrrr) but IVIG will likely be the "big fix." Basically we've been telling the medical doctors what to do and backing it up with published research (husband is MD and I'm NP) but I don't want all of this on us - it's way over our heads. Should we consult Dr T? Dr K? We're headed on vacation to Mexico for a week and I have a feeling this might push DS back into full-blown restriction mode. Haaaaalp!!
  6. Hi there, I am a 23 year old female. I've been doing quite a bit of reasearch on PANDAS lately, and everything is just pointing to it. I developed a sudden onset of severe OCD at the age of 10, followed by a sudden onset of Anorexia at age 15. I also had PLMD at age 16. And at age 21, I started getting tic like sypmtoms and body movements (I'm not really sure if they were present when I was younger as well). As a child, I was in the doctor's office almost every month getting a throat culture for strep or had some sort of ear infection. I was sick quite often as a child. I even remember having a fever of 107 at the age of 2. My question is, does anyone know if antibiotics could help an adult who possibly has PANDAS untreated? I have tried countless treatments and therapies and medications for my OCD and anorexia and nothing has helped. I feel like things just keep getting worse, and I just want some relief. I remember being totally fine as a child, and the one day waking up and feeling like my world turned upside down and had no idea why I was doing the things I was doing. This happened with the OCD and Anorexia. No previous implications of it, just literally overnight. Does anyone know (or suffer themselves) and are older? Is there anyway to know if it's PANDAS even though I am older now - symptoms never got better over the years, only worse. And of course al ldoctors do is just push this SSRI or that SSRI. I'm worried it's too late in the game to test for anything or possibly treat it. It wasn't ever a known thing when I was younger, and I've even tried to bring it up to doctors now, but I'm just looked at like I have 10 heads. I just want to be okay and recover from these horrible symptoms that didn't plague me for years. If anyone has any words of support or anything they could offer/advice/anything at all - it would be greatly appreciated. I feel like I am trapped in my own body and have been for years. Thanks everyone.
  7. I went to a support group for woman with children that have health issues. They discussed that Round-UP and GMO's not only chelate magnesium creating deficiencies but also zinc and believe that zinc supports strong sperm and there may be a link to lower zinc and difficulty conceiving. Isn't low zinc implicated in Anorexia and OCD? What are your thoughts? Our Dr doesn't supplement. I understand he has seen benefits and harm just like some here have both positive and negative reactions. I am sure it needs to be based on your 23 and me but thought I would ask.
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