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Everything posted by socalmom

  1. HI, My son is dx'd PANS on Jan 2012 and Lyme Feb 21, this year. I am trying to make sense of all this and BAM! I discover mold in my house(2 types that aren't supposed to be in my house I'm told) I am glad I thought to test my house, people thought I was " over reacting" I am sick on top of it all. It's Not enough to have a kid w/ PANS,Lyme, and be sick yourself I needed to add more drama to my life. My question is, How many Dr's do I need to get to the "bottom" of all this? an LLMD and a PANS/DAN Dr too? as well as a Naturopath? Perhaps I should add a Psychiatrist in the mix too.........for me, not my son cause I am gonna need it it seems.
  2. I am pretty new to all this 3 months into it, but if i may add my 2 cents here's what i have found: Europe and the US seem to use different dairy cows. My son didn't have " issue with Swiss or French milk as they use Swiss brown(A2) and Jersey cows where i find majority of the milk UNITED States from Holstein cows. The milk isn't homogenized either so that may be the real difference there too. We don't use milk anymore but i thought i might share this info in hopes it may be useful.
  3. Thanks Suzan. I am happy to hear positive outcomes on kids w/ congenital lyme. It's a slow and steady race I hear, and I must learn to hunker down for the long haul. it's hard when your kid is so sick and you're desperate for them to get better fast. I
  4. Thanks SFmom, I sent you a PM. Is this LLMD in SO CAL understanding of LYME and PANS? and practicing an integrative approach?
  5. According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections. 50% have no known history of deer tick attachments and fewer than 10% have a history of an erythema migrans Lyme rash (bull’s-eye).
  6. Hi, I am at low point and need help understanding the differences of a child infected by a tick bite and one " born" with lyme. are there differences??? Do kids with Lyme "triggered" PANS get better? does it end for kids born with this? (the lyme disease i mean) Anyone on here wanna help me feel like there is "light at the end of the tunnel? " thanks for any input, as I feel I am on a ledge today.
  7. Thanks. I thought there might be more out there, I'll have to do the looking. I was trying to avoid spending my free time searching the web.
  8. After a bad experience with the Emergency room at our local hospital, and dealing with skeptical Dr's AND nurses I would like to ask what information do you think is best for helping to explain this disorder? - Such as an article online or something I could print out to help me. I have trouble explaining as I am really exhausted, new to all this and have a kid that sleeps poorly.
  9. I do have a Dr. I am seeing, however just as we were going to get to ivig, my husband came down with Strep! So now I must wait for a strep free house before pursuing ivig. I can totally relate to the sensory issues, my son has this w/ smell too. Tracie: upping the abx is a typical protocol when in flare?
  10. thenmama, Thank you. my son has huge tonsils and adnoid issues. Also I notice " streppy" smelling breath. not sure why. I would love to take his tonsils out but for 2 months his movements and behavior have declined so badly I am afraid it's not a good idea at this time. I have found a Dr. but he's a 6 hour drive from us. I live in Los Angeles - A wasteland when it comes to PANS/PANDAS Docs.
  11. My son is very sick. Since Dec 14 it's been ######, as you all know it can be. His movements are severe again , never went away just waxed and waned and OCD and now choking and unable to swallow even in his sleep!! He chokes on his saliva as well as food at times, he will spit it out if it gets too difficult to swallow. FYI -he also has a fear, and obsession with vomiting. I am disturbed by the choking and worry it may one day REALLY choke him. Anybody else that can relate to this? My gut tells me an allergy of some sort........but I really don't know. He can't attend school so I don't have the fear of it happening whilst I am away from him......thank dog!
  12. his is a test that Dr T orders to determine if you are possible a carrier I believe. He ordered this on my son as well as my husband. My husaband was 1: 200 that's high. I am Negative on my Streptozyme test. Hope this helps.
  13. My son is quite sick, if It gets any worse this weekend I will go to a different hospital and hope they " believe" in PANDAS. I feel my pediatrician is over his head on this one. My husband is from France and is baffled, and disgusted how insurance companies and DR's can't agree on this and see a child is seriously sick.
  14. Streptozyme , That is the test to determine if you are a carrier I believe, that's what It looks like on my lab work.
  15. We've never done blood tests on our carrier (she's 9 now, but PANDAS started in her sister when she was 4). Our (non-PANDAS) "carrier" gets strep without symtpoms (no sore throat or fever). When PANDAS dd was first diagnosed, I had sister cultured and she was positive (on rapid). So we treated her with abs and recultured (a few weeks later?). She didn't clear on the first set of abs (Augmentin). But, did clear when we treated her with 5 days of Azith. The next school year (in the Fall/Winter) she became positive 2x (all asymptomatic) after getting strep notices from her school classroom. She's always cleared with Azith (we're N. Ca). Clindymycin was another antibiotic that was recommended but my dd (at the time, couldn't take pills-4 years old) but she couldn't take the med b/c it tasted so bad. We're your husbands titers rising (2 samples ran through the same lab)? How far apart (time-wise) were the samples? California people seem to clear up and do better on Azith, I saw an article somewhere explaining this, can't remember where? A great site by a guy named buster I think. My husband NEVER cultured positive for strep prior to blood test but blood was only done with one lab and I was told he's a carrier and yes his titers we're high which seemed odd since his culture was negative.
  16. Dr. T did blood work , he suggested it for my husband when he ordered my sons blood work as well. My husband went to our local Dr. and came back negative for Strep culture. Then we learn through an email sent by Dr. T that my husband is strep carrier. I tried calling to have labs interpreted by DR. T but I am told he's not available until next week and that i have to call back. I don't really know what to do with this information. It's very hard on me to have a dr. order a lot of blood work and make us wait weeks and I have to chase him for results. My husband took 2 rounds of Zithromax prior to blood test! Is a carrier in the family a problem and how is it handled?
  17. So, I got an email , from Dr. T telling me my husband is a strep carrier, what does this mean and how long does he take antibiotics? Dr. T is unavailable to speak with me or give us antibiotics if they are needed so what do I do ?
  18. tpotter, so sorry to hear this and so " unethical". I am sick to my stomach when I hear stuff like this, you go into medicine to help. Do they not remember their Hippocratic Oath?
  19. philamom, thanks, I know it's rough going lately for you as well right now. I don't feel comfortable taking this result as a definitive, I do think i need to explore this a bit more, should I do a urine test for DNA? or the igenex test? I really want to be sure and the more i read I am starting to worry I may have Lyme, as I have had unexplained health issues for years. S&S Thank you , a huge learning curve is no understatement!
  20. We're hanging in there, it's tough I'm not gonna lie. My head spins every time I try to read stuff on Lyme, I guess because i am so new to all this. I am very concerned with a 5 year old having two abnormal present " bands" i think it's called, on his WB test. It also says flagella found. Here's what Dr. T wrote in a brief email: ALEXANDRE 1. Strep titers, measured three ways, are negartive. 2. Mycoplasma titers are negative 3.There is no evidence of Lyme disease(why is there presence of flagella? and IGg, IgM band 41 positive, WHY?) 4. Alexandre's IgG, IgA and IgM are normal. However, he dose show some immune quirks A. His IgE is very low - 5 - typically >20, sometimes much higher B. His IgG4 is very low - expected 38, found 14 C. His IgG2 is about 40% of expected ... expected 285, found 118 D. (see the CBC on second page) - he has absent basophils - the cells that make histamine I find this curious tetrad of findings in 75% of children with PANDAS, and I call it the "PANS-prone immunophenotype" (PPI). When a child with PPI encounters a PANS-trigger, then PANS symptoms may result. The three known triggers are Strep, Mycoplasma and Lyme. There are undoubtedly many more.
  21. Thank you for your reply. I did see the post about the test that cultures the blood and I inquired as to what the name of this test is and how to get this test done??? I am just not in a good place right now and my son is so sick. It seems like many people tend to read questions but ignore. Since I am new to these boards and not as literate about lab results and diseases I feel like an outsider.
  22. Sorry to ask a question that may have been asked many times before but I am left w/ lab results and no one to interpret them until possibly Monday. Does a Present abnormal on IgG p41 and IgM P41 mean more than likely Lyme on WB test? I know lab said negative for Lyme but if these are abnormal on my son's WB lyme test, what does this mean?l
  23. Dr. T is on the case. I spoke to him this morning,(trying to get lab results for my son) and he is trying to get involved and has been swamped by media he says.
  24. If the steroid works, even temporarily, its a good bet that what you're dealing with is auto-immune. So, you'll get a little respite (or maybe even a lot) and some very good information! peglem, you are right, the steroids did something, it brought back a glimmer of my son and I asked the Dr about what you wrote if it is in fact auto immune issues we are dealing with as you said and he said yes.
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