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Everything posted by P_Mom

  1. Abx., t/a removal, steroids twice for younger son (which were amazing) That is it. I'd give them a multi vitamin, fish oil and probiotics a few times a week too.
  2. HI! I have been gone from this forum for years, but, received an email notification that I was sent a pm! Imagine my surprise. So I browsed a bit and found this. I will just briefly say that I have (had ) two PANDAS boys. Onsets age 4 (severe) and 7 (mild/moderate). This happened after they both had strep in August 2007..... onsets were weeks apart. Our world was turned upside down....to put it lightly. Fast forward 7 years. Ages 11 and 14 now and BOTH sons are absolutely thriving......not even the most seasoned PANDAS parent would ever guess in a zillion years either of my sons ever had an issue. Hang in there. Time is your biggest healer.
  3. Wow...IGM is also very negative. Only 41 showing which is very common in general population, largely due to "normal" oral flora. You have negative labs for Lyme...both IGG and IGM. This is not a test for Bart....was there other testing done?
  4. Trintiybella, That is a negative test result. Doesn't it say negative on the report? You are giving IGG results...there should be another one, an IGM one. But, anyway, the asteriks are marking the more Lyme "specific" bands, however some are not specific to Lyme, such as 41. The plus or minus next to the band is indicating if it was positive or negative. One plus is a low intensity result.....then it goes up from there.....2 pluses indicates a more intense response, and so on....it goes up to 4 pluses. You have two positive bands, low intensity...both non-specific for Lyme....that is a (very) negative test result. FWIW.....IGENEX considers IND bands to be negative. So, if you had all band show IND, the company would report a negative result. Just stating facts. BTW, I have not been on here for a very long time and the new format is something foreign to me. I can't find your pm! I'll keep looking.
  5. Yes, it absolutely can be wrong. The test result reports themselves indicate that a chance of a false positive IGM result is high in individuals with symptoms lasting more than 4 weeks or so...(even IGENEX states that) IGM easily fluctuates between positive and negative due to cross-reactivity. Mine does that.....one month positice (IGM only by CDC)...the next negative...and so on...never positive IGG though. If you have been treating a positive IGM, and that is what you are referring to being positive and then negative, I would suggest seeking further opinions outside of LLMD's. A positive IGG is much more diagnostic for Lyme etc. My suggestion would be to start with a clean slate (mind)..... get the test results in your hands and do your own research according to those results without posting them publicly because you can easily be swayed.......seek opinions from docs...both a LLMD and an infectious disease doc.....you gotta look at both sides....weigh carefully...and then decide.
  6. Well, I need Dr. L for the same type of care as you, nothing major, just abx and follow-up and to be there if things went south. I paid almost $1000 for initial visit (2 kids)...and follow-ups have been $500 and we go once a year. Hope that helps. (and remember this is for 2 kids...so divide it)
  7. Hi JPDad, This is the first one. I guess time will tell if it continues or not. I am not the organizer of the event....just the messenger. Too bad you can't make it...but, I will be sure to let you know if there is another one.
  8. Friday, Oct. 26 at 7:30 at the Panera Bread in Robinson. 295 Settlers Ridge, Groveton, Pa Hope to see those from the 'Burg there!
  9. Philly....do you or your husband get migranes or alot of headaches? My younger son gets them....myself or older son do not. Dr. L pushed on a part of my sons head in the back and made him cry in her office. It is always behind his eye or left forehead. She said one of the nerves is inflamed. Husband gets migranes a lot so she said it can be hereditary. He does not have them constantly though and advil does the trick when he does. I always thought it was because of his BAV, maybe, maybe not.
  10. Philly...but didn't he also test positive for strep? Anyway....my vote is no.
  11. UGH! I have a ticcer PANDAS son. (who had ADHD symptoms as well at initial onset) This makes me angry ....what is going to happen to the ticcer kids?? Ignored? Undiagnosed? Left to suffer? I also have a PANDAS son who presented with the works...OCD, tics, anxiety, hallucination, etc. If it weren't for his presentation, my olders son may have likely never received proper diagnosis and treatment. Both presented 2 weeks apart from same strep infection. Neurologists at CHP told me they were on path of Tourettes and come back in 4 months and we can medicate. Hummmm..BOTH boys suddenly developed Tourettes at the same time. I think not! Never went back. Got a PANDAS diagnosis and treatment and my older sons tics basically went away in 24 hours......bumpy for a couple years (mild) with illness...now in remission for almost 2 years. No meds except abx. I was told by Dr. C znd Dr L (in MD) that if my older ticcer son was not properly diagnosed and treated...he would indeed, most likely, have ended up with a Tourettes diagnosis. Dr. L does not require OCD, he is our treating physician. Personally, I would not accept the diagnosis of TS just yet....seek second opinions from other experts. Improvement with Penicillin and backsliding off.....big sign of PANDAS.. and also a hopeful one because your child...at this point, is still responsive to abx. Don't lose that window. (Penicillin is largely not effective in symptomatic PANDAS kids....it works for some, but, I would surely use a stronger abx) TS because he does not have OCD! Ugh.. that just breaks my heart....(and I know PANDAS diagnosis exists....aside from PANS...but, you can clearly see how they are all interchanged and things will just get worse with all the docs mixing it all up)
  12. Both my sons had titers for Pertussis run...they certaintly do exist! I would find a different doc.
  13. That is exactly what I think too, LLM.
  14. If someone has an active strep infection, or even a treated infection but still has elevated antibodies, and then donates for IVIG, could the donor antibodies in the IVIG be enough to cause a flair in a PANDAS child? Or, would it be so diluted and overcome by healthy antibodies that it wouldn't make a difference?
  15. I read it. I tend to believe it was PANDAS....sudden onset..woke up shaking his head one day/ocd. Tried all meds, everything and nothing worked. I do not recall a mention of it thought. The great part is it that it spontaneously resolved one day! (I think he was around 17)
  16. Well, I can say with pretty good certaintly that IVIG is not "the magic bullet that will fix everything." If it were, all of our kids would be well. IVIG is a miracle for some, helps others, and doesn't do a thing for some. There is no way to tell beforehand. I would weigh my childs state of functioning and if it is just bad, and I had given the other treatments a fair shake, I am sure I would give it a try.....knowing that I may come out with no improvement for my child. But I would be hopeful. I was in that place of what to do at one point with my younger son....I understand it is a difficult decision for so many reasons...more so for me at that point because my son was doing fairly well when it was suggested for him. Now, if he had stayed in the bad place he was in....I be running for it. Also...you may want to think about the allergy shots. You will hear different things from different people/docs, but... I personally have a strong conviction that allergy shots should not be given to a PANDAS/PANS child. Allergy shots are designed to stimulate the immune system......something, in my opinion, that is the very thing that needs to be avoided in these kids. Just like illness stimulates the immune syatem and causes a falir....allergy shots would do the same thing...and it is a purposeful, aggravated stimulation. I know allergies can be bad. My older son has pretty significant allergies to dang near everything on the panel. Pollen season used to cause a facial tic. Over the years, I only treated with Zyrtec when needed and Nasonex. He managed well. This year he has taken very little meds for his allergies. It seems as he is getting older and hit puberty, they are diminishing on their own and there is no seasonal facial tic anymore. I think as the PANDAS settled, his allergies settled...makes sense to me. So, even though I have heard some docs say allergy shots are ok for PANDAS kids, I could just never do it.....so much is still unknown and it just doesn't make sense to me. Just something to consider. Best wishes. May I ask who recommended IVIG?
  17. That is the thing. Some articles state .5 as protective...others go all the way up to 2.0 If you research it, you will find they really don't know. Many kids, for whatever reason, just don't "take" to the vaccine well. Failure of the vaccine or the child? I don't think they know that either. I just recently read an article stating how children generally have low titers to this and as they age...their numbers significantly increase. it can just be a matter of time or immune maturity. Remember, this vaccine did not exist when we were kids....just came about in the late 1990's...I think around 1999. So, very understudied vaccine....not much history to go on. Heck...we faired well without it...right? Nobody checked out titers to it.....I wonder how many of us would have "failed?" Anyway, my son(s) numbers look similiar to yours and several immunologists consider their response adequate. Most importatnly, they do not get sick often....I think the clinical picture is more telling than the titers. Funny thing is...their highest titers, 5.0 and up, were to strains they were not vaccinated to. They got the strain/illness naturally and mounted a more than adequate response...that is very telling of their immune systems. They naturally work well....maybe not so well artificially induced. Same with Pertussis....no immunity from the vaccine (fully immunized) but, mounted a great, natural response on their own when they contracted the illness.....titers went from none to quite high.
  18. Our daughter is currently being treated with azithromycin. She has been on a prophylactic dose every M/W/F during the school year for the last couple of years. We noticed a return of mild symptoms this spring and had titers run again. Her mycoplasma titer should be between 0 and 99. It was 727. Therefore, she is being treated for a chronic mycoplasma infection which requires, in her case, azithromycin daily for 60 days. Azithromycin can be a drug used for our PANDAS kids. There are quite a few PANDAS kids in our support group who are on a prophylactic dose of azith. I'm hoping that it does not become hard to get due to this study. Oh, I am well aware of the zith usage among PANDAS kids. And, I wouldn't personally discontinue it if my child were on it and it was working. I also know many on Zith....I am not sure what you got out of my post?? I also do not wish for abx to be any harder to get for our kids. I don't think this is anything new, though. This risk is common. I just stated that I didn't know why it wasn't put under the Lyme thread too?
  19. I am confused as to why this is not posted under the Lyme forum? Zith is generally used at much higher doses for treating Lyme. Nothing new http://www.qtdrugs.org/ Even Pepcid and Benedryl have this risk. It is a commonly recognized risk that has been around a long time and is associated with MANY meds.....I think it may just be new to zith. I wouldn't stop the med or get overly concerned. If you want to be sure everything is okay....ask for a simple EKG.
  20. Yes! We took younger sons tonsils and adenoids out strictly for PANDAS/strep reduction. This was last year....4 years after PANDAS onset. By then, he had no signs of strep, hadn't had strep in years, and titers were well in normal range. The ENT said, on office examination, that his tonsils "looked good." Small, not infected, no recurrent strep....no real basis for the removal but he did it for us anyway based on what I told him. (great doc ) Much to our surprise, after removal, doc came in to recovery room and told us his tonsils were "very infected with pus in areas." I had to pick my jaw up off the floor. Since then, he has made nothing but gains. I wonder if it is due to mere time, staying strep free, removing those tonsils.......or a combo of it all. But I will say in the 4 years leading up to the surgery, he had symptoms (low level) that just would not clear and he reacted to all illnesses he got. (and exposure) He now does not react and his low level, stubborn symptoms have vanished. Either way, I am soooo glad those things are gone!! By the way....your sons s. pneumonia titers look pretty good!
  21. EAMom... Both my boys got Pertussis a few summers back despite being fully vaxed. So, in my opinion, what is the point of the vaccine? A few docs seem to think the vaccine is not so great....proved to be the case for my boys. One son did not flair from the illness, the other started to, but, I quickly dosed a steroid burst because it started with the potential to be a decent flair. With the combo of zith and steroids, the flair was stopped in its tracks and the illness ran its course with no incident in either child. Not worth the risk....vaccinating. (just my opinion) They both did get their Tdap titers run. Both are protected for all, still, and now their Pertussis titers are really high. So, it seems out of the 3 components, pertussis was the element that didn't take for them. Tetanus and diptheria are good. After going through pertussis, although it was not fun, it wasn't terrible and I would take the illness over a PANDAS flair or the potential havoc vaccines can do. My son is also extering 7th grade and is "required" to get shots. All I give them is a script slip that Dr. L scribbles "vaccine exempt" on it and that is all it takes for us. Younger son "needed" shots last year for 3rd grade and that scribble worked for him. It should be that easy for everyone!! And s&s is right...they try to scare you and make you think you have no options! Bullies! Oh and for me.....I am 100% convinced that not vaccinating is right for my boys. Gotta keep the immune system as calm as possible for as long as possible....give it time to heal.......to "fix itself"...as Dr. C stated.
  22. My son had weird sensory/taste/texture issues at one point with his PANDAS and would not eat certain foods. No salivating however. Gunillafromsweden.......encephallitis is simply swelling of the brain. PANDAS is swelling of the brain due to an autoimmune response.....so, PANDAS is just another form of encephalitis
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