philamom

Does anyone have a copy of a sample letter used to obtain a 504 in school? Thx

LLM- thanks for the suggestions. I hope your daughter's school day ended well!

Julia Faith- Yippee for the first day! You deserve those good tears!! cobbiemommy- I'm right there with you on the school. After making some treatment changes, my daughter had a pretty great month of July & August. Then last week we went down the shore and on the first day she was incredibly sweet, well-behaved, no yelling when I told her no boardwalk for the day, and then she woke up the next day miserable, and it's been crappy ever since. She's hyper, impulsive, defiant, inflexible. Anyways, we are also having major, major school anxiety issues & refusal. And, to top things off, her school who always had her best interest at heart (even asked me to pick her teacher last year - 3rd grade) has placed her with a tough teacher, who issues a lot of written work & homework - my daughter's trouble spots. Now I'm scrambling to help her with no 504/IEP in place, because up until now the school has been super supportive. And my daughter also deals with constant arm & leg tingles from the lyme, which seems to get worse when she's writing. Sorry I just hijacked your thread...frustrated too I can't imagine the troubles in middle & high school...I'm already a mess.

Nice Site Kim -- Thank you!

Thank you!

Can someone please provide me some links where it mentions that handwriting can deteriorate with PANDAS. I would like to pass it along to some teachers. Thanks in advance!

I haven't used this product from Nutramedix, but have been using Burber on my daughter for detox. I saw this why googling and thought I would post. The dreaded lyme rage… surely most of us have experienced it by now? The don’t-bother-me-or-I’ll-scream rage, or the I’m-gonna-kill-something rage? The type of rage that can easily ruin relationships and make your life even more miserable. Fortunately, there are ways to at least take the edge off of the rage, and in many cases, evaporate it entirely. So, here we go… The absolute FIRST thing that you need to do when you feel yourself under the black cloud of Lyme Rage is EAT if you haven’t in a while. Low fuel (and likely low blood sugar) can trigger full-blown lyme rage all on its own. Drink some water as well, since dehydration can also add to a rage. For some reason, both low fuel and dehydration make a lymie go into a major rage more than a ‘normal’ person, so be sure to eat and drink sufficiently throughout the day. Once you’ve taken care of these easy to fix issues, the next step is to look at herbal Rage Busters. My favorite herbal Rage Buster is Avea Mood by Nutramedix. This stuff has been known to evaporate rage in mere seconds! 10-20 drops in water, and drink it down. Easy enough, and the stuff is pretty tasteless as well.

How much salt do you add to a foot soak? thx

You might want to pm SF MOM regarding the colloidal siver. She has mentioned using the "Sovereign" spray on her family.

I'm not really sure what it means, other than some children with elevated immune complexes could test negative for the Lyme Western Blot, due to the antibiodies being bound within the complexes. My daughter's result is normal, so I didn't ask any further questions. Sorry - no help here.

Our LLMD uses Quest (two tests)...but he runs all our labs with Quest, outside of tick borne infections. C3D Circulating Immune Complexes C3D Immune Complex Immune Complex Detection by C1Q Binding

I'm glad to hear the tide is changing. I took my daughter to CHOP (neurology) in 2006 & 2009 and to Dr. E in 2009. One Neurologist and Dr. E diagnosed PANDAS. Didn't get anywhere. In June 2009, we paid out of pocket for IVIG in Chicago. The only blood test that was done on my daughter in those three years was a D-nase test. It wasn't until we saw an Immunologist in Nov 2009 that labs were drawn and some deficiency's discovered. And then in July 2010 we unraveled lyme, bart, and rmsf.

Best of luck Michael!! Sending prayers for a speedy recovery & success!!!

Hey Jill - Are you aware of anyone locally using this pediatrician (Dr. Gordon) for PANDAS?

Hi Jill! I haven't watched the video yet - will need to check out the new look. When we were there 2+ years ago, we received the same line "still at the very preliminary stages". I too feel very hopeful for the younger children in our area, but sure wished I would have done a few things differently since our appointment. Melinda

Researchers find rare new disorder in children -------------------------------------------------------------------------------- - view video - Researchers find rare new disorder in children Video updated on: 2011.09.04 at 09:58 AM EDT Story posted 2011.09.04 at 09:30 AM EDT Dante Falcone was a happy, social child but his mother says around the time he was four, he changed seemingly overnight. "All of a sudden he would sit in the corner or he would crawl under a table and he wouldn't come out," said Severn Falcone. Dante also began obsessively washing his hands. "When you looked at his hands they were almost bloody, they were so raw from being washed," said Falcone's mother. It got worse to the point where he became suicidal. That's when his mother took him to numerous doctors. Shortly thereafter, Dante was diagnosed with PANDAS. It stands for Pediatric autoimmune neuropsychiatrc disorders associated with streptococcal infections. Dante had a strep infection just before his symptoms started. Researchers like Dr. Josephine Elia say the theory behind PANDAS is that the antibodies formed to fight strep mistakenly interact with brain chemicals, causing obsessive compulsive behavior, anxiety, ticks and other problems. This rare diagnosis is controversial as it has not been fully proven. "We're still at the very preliminary stages of understanding this condition but does it exist? Without a question," said Dr. Elia from the Children's Hospital of Philadelphia. Dr. Elia says it may not just be strep but other bacteria that can also spark the disorder. Dante, now a teenager, was treated with both antibiotics and behavioral therapy as a child and has fully recovered. He still takes antibiotics to ward off future infections, which is also considered controversial. Taking antibiotics long term can lead to resistance, but pediatrician Dr. Hal Gordon sympathizes with parents. "Once you see the symptoms, the effect it has on your child and the pain they are in, you want to do everything you can to prevent that from happening again," said Gordon. Dante's mom does worry about him being on long-term antibiotics but she also says the treatment gave her son his life back. "It was almost like day and night," said Falcone. Doctors say, another problem is that not all physicians are aware of the disorder. Dr. Elias says research has prompted new treatments but much more work is needed to make it a recognized disorder and have set out guidelines. Story posted 2011.09.04 at 09:30 AM EDT -------------------------------------------------------------------------------- All material © 2011 WPVI-TV, Inc. & 2004-2011 LSN, Inc. All Rights Reserved - Sent from my iPhone

Our LLMD ran a blood test to check for yeast. He says it's reliable, but others disagree - so not realy sure. At this time, we really don't have a problem with yeast that I'm aware of. We did have some flairs when daughter was taking Augmentin though. Maybe the blood test (Candida Albicans IGG) is reliable since my daughter's Quest result just came back High. It was normal in January. I need to ask the doctor if it should be treated.

You can find more information on their website www.florastor.com. Under Healthcare Professions you will find info. regarding diet restrictions. It does contain 33mg of lactose (same as 1/3 slice of cheese) per serving. The Florastor capsule contains titanium dioxide but not the childrens packet, if anyone is interested. There is also a $5 dollar coupon off a 50 count bottle you can print.

2 articles below of interest: 1) Findings of a study of Chronic Fatigue Patients - well over 80% of these patients had seronegative Lyme disease and responded favorably to antibiotic treatment improving by at least 50%, and many more. 2) Findings of a link between tick bites and new onset of allergies - IGE responses. This is not the first finding of such a connection -- there appears to be a strong link between tickborne illnesses and allergies. RETROSPECTIVE ANALYSIS OF A COHORT OF INTERNATIONALLY CASE DEFINED CHRONIC FATIGUE SYNDROME PATIENTS IN A LYME ENDEMIC AREA Samuel Shor1, MD, FACP -------------------------------------------------------------------------------- ABSTRACT Background Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers. Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with Lyme disease with appropriately directed antimicrobials has been associated with improved outcomes. Methods An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen. Inclusion criteria required fulfilling the International Case Definition for CFS. Results Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen, involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total identified as having a high potential for seronegative Lyme disease. Conclusions A potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS in a Lyme endemic environment actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we have the ability to improve outcomes. -------------------------------------------------------------------------------- Bulletin of the IACFS/ME. 2011;18(4):109-123. © 2011 IACFS/ME Read full paper http://www.iacfsme.org/BULLETINWINTER2011/Winter2011ShorCFSinLyme109123/tabid/458/Default.aspx this may have been posted before but the connection between tick bite and food allergy seems pretty common in general J Allergy Clin Immunol. Author manuscript; available in PMC 2011 May 3. Published in final edited form as: J Allergy Clin Immunol. 2011 May; 127(5): 1286–1293.e6. Published online 2011 March 31. doi: 10.1016/j.jaci.2011.02.019 PMCID: PMC3085643 NIHMSID: NIHMS273885 Copyright notice and Disclaimer The relevance of tick bites to the production of IgE antibodies to the mammalian oligosaccharide galactose-α-1,3-galactose Scott P. Commins, MD, PhD,a* Hayley R. James, BS,a* Elizabeth A. Kelly, MD,a Shawna L. Pochan, CNM, MPH,a Lisa J. Workman, BA,aMatthew S. Perzanowski, PhD, MPH,b Katherine M. Kocan, PhD,c John V. Fahy, MD,d Lucy W. Nganga, MD,e Eva Ronmark, PhD,f Philip J. Cooper, MB BS, PhD,gh and Thomas A. E. Platts-Mills, MD, PhD, FRSa aAsthma and Allergic Diseases Center, University of Virginia Health System, Charlottesville bMailman School of Public Health, Columbia University, New York cCenter for Veterinary Health Sciences, Oklahoma State University, Stillwater dDepartment of Medicine, University of California, San Francisco eCenter for Respiratory Diseases, Kenya Medical Research Institute (KEMRI), Nairobi, Kenya fDepartment of Public Health and Clinical Medicine, Umea University, Umea, Sweden gUniversidad San Francisco de Quito, Cumbaya, Quito, Ecuador hLiverpool School of Tropical Medicine, Liverpool, UK. Correspondence to: Thomas A. E. Platts-Mills, MD, PhD Allergy Division, University of Virginia Health System, P. O. Box 801355, Charlottesville, VA 22908, Email: tap2z@virginia.edu: (434) 924-5917. *These authors contributed equally to this work. The publisher's final edited version of this article is available at J Allergy Clin Immunol See other articles in PMC that cite the published article. Other Sections▼Abstract Background In 2009, we reported a novel form of delayed anaphylaxis to red meat, which is related to serum IgE antibodies to the oligosaccharide galactose-alpha-1,3-galactose (alpha-gal). Most of these patients had tolerated meat for many years previously. The implication is that some exposure in adult life had stimulated the production of these IgE antibodies. Objectives To investigate possible causes of this IgE antibody response, focusing on evidence related to tick bites, which are common in the region where these reactions occur. Methods Serum assays were carried out using biotinylated proteins and extracts bound to a streptavidin ImmunoCAP. Results Prospective studies on IgE antibodies in three subjects following tick bites showed an increase in IgE to alpha-gal of twenty-fold or greater. Other evidence included i) a strong correlation between histories of tick bites and IgE to alpha-gal (χ2=26.8, p<0.001), ii) evidence that these IgE antibodies are common in areas where the tickAmblyomma americanum is common, and iii) a significant correlation between IgE antibodies to alpha-gal and IgE antibodies to proteins derived from A. americanum(rs=0.75, p<0.001). Conclusion The results presented here provide evidence that tick bites are a cause, or possibly the only cause, of IgE specific for alpha-gal in this area of the United States. Both the number of subjects becoming sensitized and the titer of IgE antibodies to alpha-gal are striking. Here we report the first example of a response to an ectoparasite giving rise to an important form of food allergy. Keywords: ticks, anaphylaxis, oligosaccharide, alpha-gal, IgE antibody to CCD

I didn't think the CD-57 was a reliable test for children.

Our LLMD ran a blood test to check for yeast. He says it's reliable, but others disagree - so not realy sure. At this time, we really don't have a problem with yeast that I'm aware of. We did have some flairs when daughter was taking Augmentin though.

Jodie - I am so very sorry to hear of your tragedy. Please let me know if there is anything I can do! My daughter has been on zithromax 250mg and Minocycline 50mg daily since December. You are in my prayers!!

My daughter had numerous sinus infections growing up so they were always looking for the underlying cause. In between sinus infections though she was fine and didn't show any signs of allergies. Anyway, she had three scratch tests (back & arm) at different ages which were normal. Then at age five they did an intra-dermal needle test which came up positive for dust mites and maybe positive for cats, hard to tell because she was moving too much at that point. So I've been washing her sheets, blankets, stuffy's, exc., weekly in hot water. A little over a year ago I had Dr. B run a blood test to check for allergies to dust mites & cats, which came back negative. One doctor said the scratch test was better, another said the RAST blood test was better. I wish I knew which was more reliable, as I would like to get another cat (had 2 before) and am considering having daughter tested again. Oh, and I finally bought her a comforter last week and noticing some slight agitation...hmmm.

You could start with some basic labs: ASO, D-NASE, Streptozyme Screen -- although, if negative doesn't rule out PANDAS, IgG Serum & sub-classes, Streptococcus Pneumoniae 14 Serotype, Mycoplasma, Igenex Westen Blot for lyme. We see an immunologist in CT for daughter's PANDAS.

beeskneesmommy- my daughter had a tick bite in spring of 2006. A week later she was complaining of pain behind both knees and I took her to the ped (not my usual one) who said there was nothing to worry about because there was no bulls eye rash. She was taking some gymnastic classes (more fun than instructional) so the doctor chalked it up to that, but she was taking them for a while with no prior complaints. A month later to the day, she had a severe sore throat and fever for three days (in July) and it was never associated with the tick bite. I only remembered this tidbit after receiving her positive western blot and going back and asking for our records of the time of the tick bite. If only she would have been put on a round of antibiotics . Eight months later is when she had her first severe PANDAS episode. That's when we learned about PANDAS, but, she also had minor panda-ish symptoms with every sinus infection she had since age 18 months that resolved with antibiotics. She had numerous chronic sinus infections growing up.