AmySLP

I live in Binghamton, but am originally from the Wilkes-Barre PA area. Seeing more and more people on the forum from NEPA. Wondering if a support group locally might be something you are interested in. I currently am in Binghamton, NY, so would think this might be a nice group from NEPA/Southern Tier of NY region. Let me know if your're from this area & might be interested in some sort of group. Amy

Very interesting-her front gum has been swollen for days & the tooth is hanging by a thread. Of course she won't pull it so it can heal already. I did add the AUgmentin back in & the weekend was better, despite the tooth/gum swelling worsening. thanks for this input AMy

I know that this os one test Dr B did-I don't know what bands were reactive, but we do have 3 indoor cats. However, they were all rescues, so had been exposed to fleas &tics prior. COuld my kids get this from the cats?

Thanks to all for your quick responses- I need to dose her now with something-held off for your opionions. I'm going with another dose of Augmentin ES & then tonight i'll do a dose of Zithromax. SHe is taking diflucan for another week, so that's in the mix & I'm trying to fit in a probiotic somewhere in there too. In an attempt to get our mind off all this & have some fun, we are heading to a water park in the Poconos for the night. Can't stop thinking about how people write about chlorine affecting kids, but we had no problem with this last summer & she swam usually twice daily. MomMaine- I have to tell you-if you opened my kitchen cabinet where we keep all our meds & saw my ABX stash-it's crazy. B/c my kids have taken lots of ABX in liquid form with Rx's of 30 days, I have lots of unconstituted bottles, b/c then in the meantime the doctor may have changed to a different rx. I've learned to make sure I get all the bottle from the pharmacy with the original Rx. & then I bring the bottles in to get re-constituted. I switched pharamacies, when the last one insisted that they had to keep the unconstituted bottles until I returned each 6 or 10 days and then would not give me the remaining (that I or my insurance co. already paid for). Now I have all unused, unconstituted meds. & boxes of tablets from old prescriptions-saving all these for times like this. Thanks for your advice!

I forgot to add that she has a very loose front tooth the last 10 days or so too. I have read about this causing ramping in syptoms as well.

My daughter was switched to Zithromax (from Augmentin that she was doing ok on due to PANDAS) b/c she had reactive bands on the Lyme testing. HEr PANDAS symptoms are ramping up, with old behaviors returning that we havn't seen in 2 yrs. Is Zithromax better for Lyme in this waiting stage compared to Augmentin. It's hard to watch her backslide in the meantime. LAst night in a panic I gave Augmentin ES instead of Zithromax. CAn't get Dr. B until Monday-What would you do for the weekend? In the past Zithromax never took care of her PANDAS symptoms 100% and that's how we ended up on Ammox/Augmentin for nearly a year now. Thanks, Amy Hoping to get the Igenex sent back by TUes, as I got the kits in the mail yesterday.

In a nutshell- My 6.5 yr. old had been mananging quite well on Augmentin ES (400mg Augmentin, 250 Ammox) once per day. SHe had some exacerbation in the last few weeks. Saw Dr B for reg visit. He had me increase her to Augmentin only twice daily (400mg). No real improvement, but again this was just a little backslide, old tics (but mild ones) breaking through. A few days later he calls me with Lyme results showing reactive bands, orders Igenex, and says to switch her to Zithromax (this never worked 100% for her in the past). Well....it's been just a few days on Zithromax, and some of the behaviors she had 2 yrs ago, when all this was diagnosed, have returned. Last night I gave her Augmentin ES, instead of the Zithromax. KNowing that Zith was not really great for her in the past, even though it's only been 4-5 days on this, would you stop Zith & go back to Augmentin or Augmentin ES until I can get Dr. B on MOnday?? My pediatrician questioned the Zithromax, saying that it is not typical ABX for Lyme anyway, so if that's the case, thinking maybe she should stay on the old plan until we get the Igenenx results back. Should I stick with the Zithromax or go back to Augmentin through the weekend? I have a cabinet full of both. Thanks, Amy

Thanks, I got her contact info. Amy

With hesistation, called Albany medical center's pediatric infectious disease docs to see if they treat Lyme & are familiar or at least believe in PANDAS. THey have no nurses, spoke with the receptionist who was adament that they treat PANDAS there. Of course, I questioned her up and down until she said I should have the pediatrician call. I was told 3 of there 9 doctors also treat Lyme. My pediatrician (who is a believer in PANDAS and all for long term ABX) is concerned about all the positives in the labwork-Myco P for my little one, Lyme on the Western Blot for both girls. HE feels that I should get a second opinion. He completely agrees that my 6.5 y/o has PANDAS. I tried to explain co-infections and that the panels of labwork being run by Dr. B are those that appear to be common to kids with PANDAS. He seems to think a infectious disease doctor should see my girls. I just can't bear a differing opinion. Reminded him that Allison has been seen by Dr Latimer and Dr Bouboulis with both confirming PANDAS & again with her strep history, does not dispute that. He also suggested maybe going back to her for another look at the labs and see what her recommendations are. Not sure what to do- Has anyone gone to these docs on Albany? I guess you'll need to PM me if it's about docs specificaly. Thanks, Amy

With hesistation, called Albany medical center's pediatric infectious disease docs to see if they treat Lyme & are familiar or at least believe in PANDAS. THey have no nurses, spoke with the receptionist who was adament that they treat PANDAS there. Of course, I questioned her up and down until she said I should have the pediatrician call. I was told 3 of there 9 doctors also treat Lyme. My pediatrician (who is a believer in PANDAS and all for long term ABX) is concerned about all the positives in the labwork-Myco P for my little one, Lyme on the Western Blot for both girls. HE feels that I should get a second opinion. He completely agrees that my 6.5 y/o has PANDAS. I tried to explain co-infections and that the panels of labwork being run by Dr. B are those that appear to be common to kids with PANDAS. He seems to think a infectious disease doctor should see my girls. I just can't bear a differing opinion. Reminded him that Allison has been seen by Dr Latimer and Dr Bouboulis with both confirming PANDAS & again with her strep history, does not dispute that. He also suggested maybe going back to her for another look at the labs and see what her recommendations are. Not sure what to do- Has anyone gone to these docs on Albany? I guess you'll need to PM me if it's about docs specificaly. Thanks, Amy

Wondered about this congenital Lyme. CAlled my mom last night when I read that Lyme can be misdiagnosed as Fibromyalgia. When I was about 12 yrs old I had months of joint pain. After countless doctor visits to specialists, they eventually decided this is what I had-pediatric fibromyalgia, diagnosed at CHOP. Never was convinced by the diagnosis. My mom said she thinks they tested for Lyme, but it seems as though the testing has developed since then (about 25 yrs ago) & again it is a clinical dx. Curious to read more about this, as I am wondering if I could have lyme. The thing is, my family seems to have a history of PANDAS. My Dad, myself, my sister, all seems to have symptoms as kids that are similiar to my girls, with residual OCD left behind. Following my "fibromyalgia" dx, my tonsils & strep became a problem. Eventually leading to removal following several abcesses. This did not end my boughts with strep-learned too from Dr. B yesterday that my ASO is 709. Thanks for your support and advice, Amy

Someone private messaged me yesterday in response to this and told me to check for lyme (well we drew labs for this 2 weeks ago)--just got the call today that my daughter (actually both daughters) have reactive bands to Lyme with elevated IGG & IGM. Can't imagine how-just ordered Igenex kit. So confused as to how this person who told me to check for Lyme had some inkling. Is there something with the movement disorder that makes one think Lyme? My daughter did c/o joint pain/leg pains at the start of all this. Now I feel more lost than ever in all this-

I have 2 daughters, 6 1/2 & 4, with significant strep history in my 6.5 yr old with confirmed PANDAS by Dr Latimer in April 2009 (after 7 months or so of strep that was tough to erradicate & Ebstein Barr virus in the midst of that too). We currently see Dr B. Got a call today that both my girls had "reactive bands" to lyme with increased IGG & IGM. I was so shocked (probably nearly in a panic attack), that I didn't ask a lot of questions initially, just got the info on how to get the Igenex test kit. Also, my little one is on zithromax already (positive for Myco P) so they extended her ABX. My 6.5 yr old was on Augmentin, but he changed her to Zith. for now as well with these results. Having a hard time reading the threads on here for newcomers as I am so thrown by these results. Do I understand this right that this may not be Lyme, but actually infections/co-infections that make for a false positive. How could both my girls have this?? Not even sure the little one has PANDAS, although DR B does think so. Honestly she has a significant decrease in rages & sensory issues since Zith for the last 2-3 weeks. She did have an elevated Cd3 (38) a few months back, that we did not know the reason for it. Thanks so much for any insight you can provide- Amy

We do see a pediatric developmental optometrist yearly for convergence insufficiency disorder, which seems to be improved based on last appt. Yesterday, she was trying to stop this behavior is the midst if she saw me watching her-I feel badly for asking her about it the other day. I have never asked her before about her movements and now I'm afraid I've made her aware or anxious about them. When she was trying to keep her right arm still (putting her arm straight and palm flat on the chair) she had lots of tremor like movements in it. Dr. B changed her meds from Augmentin ES once daily (combo of Augmentin 400mg & 250 of ammox) to just Augmentin 2x/day. She had a blood draw for myco P. b/c my little one had very high numbers and is being treated for such. Dr B did not put my 6 y/o on Zith until results came, b/c it has not improved the tics before. When pointing out these movement disorders to someone the other day as I explained that these are symptoms of PANDAS, she said--"well that's not so bad." Compared to how bad it could be, based on other stories I read here, that's true. However, my daughter has been on ABX for nearly a yr. What would she be like without them? It's really hard to watch your child have all these quirky INVOLUNTARY movements.

A few days ago my daughter had exacerbation of tics during a Girl Scout mtg. where another little girl was sick (we don't know if it was strep). Since then I have been noticing her throat clearing tic & simultaneous eyeblinking. But new is where she holds up her right hand in front of her eyes as if to look through it. Sometimes she curves her hand like a backward letter "C" & other times she spreads the fingers and brings it closer to her eyes as if to change the perspective of how she is seeing something. At first, I thought it was just experimenting with her seeing different objects, but then I realize that it comes following her throat clear & eye blinks. I asked her yesterday about it, to see if it's something she was aware she was doing, and she replied that she just had to do it-looking through her hands. Is this OCD or a complex tic? I've always struggled when journaling her symptoms if she had OCD symptoms, as they are not the obvious behaviors. What would you consider this? A complex tic or OCD? thanks, Amy

"They have an autoimmune disorder called pandas, pediatric autoimmune neuropsychiatric disorder associated with streptococcus (this can be enough to glaze them over so no further discussion is needed)". dcmom- you said it all here! Isn't it so true-rattle this off and often you've said enough-just has an authoritative ring to it!

Ann- this is why I believe the prophylactic ABX are critical. For us, my daughter has a dose for this reason, and then, if I get a strep notice, or she ramps up in symptoms, I increase the dose to twice daily for a few days. My pediatrician is on board with this and being local it's easy to call him and get a refill, if I run short for the month b/c I've had to do this. We see Dr. B as well, every 8 weeks or so, and I always ask for an extra RX. just to have. I would imagine that others adjust the ABX as well. My daughter is doing well on Augmentin currently. But this seems to be really child specific, as my little one is doing better on Zith. The roller coaster of this is the hardest part. Nothing is predictable and the ups and downs never get easier, maybe a little less neurotic feeling, but never easier. Hang in there-seems like spring here in the Northeast is always when strep is most rampant. Amy

I do feel so much better knowing that this is possible, b/c she is doing quite well since that evening. I started to get thinking about how often the library tables are wiped down, figuring that every child in the school sits there once during the week. No crafts or anything like that at GS that night. Don't know yet if this girl had strep, but did notice her mom picking her up from school the very next day, so I can't imagine she saw a doctor. Thanks for your input! Amy

Strep galore in my daughter's school last 2 weeks. We increased her daily ABX to twice daily (Aug 400mg) last week. She's been generally good. Last night at Girl Scouts, which takes place in the school library, my daughter started having verbal, facial tics and repetitive hand movements. Another girl developed a hoarse voice apparently during the school day per her mother. I mentioned that she should be tested for strep b/c of all the strep in the school, but she said her daughter doesn't typically get that symptom with strep (is anything typical about strep presentation??) Of course, I explained Allison's PANDAS, which I feel I've done in this group of moms before. Couldn't help the whole hour watching my PANDAS daughter move and tic during that time & wonder if that child has strep or if that library is full of it. When we got home, I did not see even one tic or movement. Is it possible to have an increase in symptoms just in the presence of someone with strep for one hour?

YES-my daughter had huge welt like hives that eventually covered every inch of her body over 3-4 days. After a second MD visit I insisted the doctor swab her for strep & she was positive. It was her only symptom!

Scarletina (strep rash) appears on the torso first. In my daughter it was always spread out and classically "sandpaper-like." It was my daughter's only "typical" sign of strep. Google strep rash and compare-it can be cultured-but my daughter was always positive in the throat when she had the rash. Amy

Just learned that our 4 y/o has/had this by chance with a blood test Dr B. ordered. No symptoms upper resp.-wise, but rashy as could be for several weeks and behavioral symptoms in that time period. Last thing I would have ever guess to come back postitive and it was a really high number-tested with Igg & Igm.

I would speak to the principal and ensure the janitorial staff spend extra time in that classroom-for instance in my daughter's school they only wipe surfaces 1x/week. After talking with the principal and head custodian, her classroom gets surfaces wiped daily. Also, no use of water fountains at school (or anywhere for that matter!) I've also trained my daughter to use hand sanitizer everywhere-lunchbox, bookbag. Her teacher enforces this with all the kids after handwashing b/c of touching the faucet. These are simple things and some may feel they are a bit overboard, but I have to say, I get far fewer strep notices than I did last year before we put this into place. Amy

Yes, we are. Our appt is 11ish for both our girls 6 & 4. This will be about our 5th follow-up. Maybe we'll see you there. Coming from Upstate NY so we usually do not arrive early, as we leave in the am from home. Amy