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Everything posted by Lisa1971

  1. Excellent....Thank you... ...with bumping up the Azith...does it matter 1x per day... or split the 250mg 2x per day?....morning or night? he gets it 1x per day now, at night.
  2. THANK YOU!!!!!!....all of you just made me feel so much better... I just got back from a school event and found strep is rampant in his class right now... His first Neuro appt with the new practice in not until the end of September (his old one moved to nebraska) , but they said if I need to push it up to have the pediatrician call...EXCEPT...I just found out our insurance is changing plans and won't know the details until this afternoon....if the new insurance won't cover the new doctor I will have to go private insurance with the same carrier...but then a wait period...and then there
  3. Hi everyone...it's been a while...but I have a quick question... Alex's tics never really went away completely after gettting strep in September (he was completely symptom free all summer)....he is on 125mg Azith daily... two weeks ago he came to me as said he started 'counting' again...his steps and movements.....this broke my heart as he hasn't "counted" since June 09... off to the doctor last Wednesday and rapid and 48 hr cultures of strep A & B negative...(which puts me back on the 'crazy mother' train again...) his seasonal allergies are full swing being controlled by
  4. We see Dr. Corbier there. We started seeing him for my dd's seizures and then kept going for our behavior and other issues. He is very good and very busy. It takes forever to get an appt and our appts always run late. I feel that he really knows what he is doing and he gets that light bulb look and has ideas of what to look for. He was the one who first suggested PANDAS for us. But, he was not big on treatment and with our low titers he dismissed the idea at first. It's not that I don't recommend him, but if seeing him for PANDAS, I would be very vocal about what you want and whether
  5. We had Dr. Nelson prior to his moving...and he suggested Northeast Pediatric Neurology in Concord...I spoke with them and they said both neurologists treat PANDAS...it has taken 7 weeks after being referred and they finally sent us new patient paperwork...still waiting to schedule an appointment...so unfortunately, I don't have any personal feedback on the doctors, other than their administrative process is rediculously slow...
  6. For us the recover is literally one day good, one day bad...two weeks into this round of antibiotics Alex could not get through his timed basic subtraction problems (he's in third grade and an honors student) and was very wiggly...the next day his tics were much less pronounced and he sped through the same problems with time to spare...the next day...couldn't get through them again...now 7 weeks in...we are one day wiggly, the next day hardly any, the next day wiggly again...(math is not an issue) when I say wiggly...his major tics are finger wiggles and shoulder shrugs...he will cycle thr
  7. I just read something that said that people with autoimmune conditions should not get the chickenpox vaccine... what a huge coincidence that some of our kids may have unknowingly had strep when they got the vaccine or shortly after receiving it...and now strep...triggers an autoimmune response. By comparison Alex was old to present...8 years...I've been trying to figure out why, now...he'd had strep before, he'd had his first dose of the vaccine before...but this time he had them...together....while his seasonal allergies were raging...it's got to be connected... http://www.wisegeek.co
  8. It puzzles me that docs seem to think "treating the symptoms" (as if that actually works) but ignoring the underlying auto-immune problem is an acceptable way to treat PANDAS. I just don't get it. If you had any other disease.....for example a treatable yet cancerous brain tumor in a child, that was causing, for example, seizures...would a doc say, "I just want to treat the symptoms, let's leave the tumor alone, no radiation or surgery for your child...we'll just try to control the seizures with these pills--??" You would think he was crazy...yet docs do this to PANDAS kids all the ti
  9. She is in Charlotte too - it's Dr. Nelson that is leaving for Nebraska. We took Meg's prescription out to May before he left, but we may also have issues locally - we'll see. If she has a immune deficiency, I think we'll be ok, but if not, our network has broken down a little. We are on the hunt again now. My understanding is that his partner is willing to treat "symptoms" of PANDAS, but is not a believer in antibiotic/IVIG treatment. (So SSRI for OCD, etc). He refered us to NorthEast in Concord & I will try to get an appt there. I called ahead & the front would only tell
  10. The same exact thing happend to my son...8 year old checkup he was fine, gave him the chickenpox booster...and a few weeks later full blown PANDAS (first episode)...tested positive for strep for which he had no symptoms and could have had for upwards of 8 weeks prior. He was also in the middle of an allergy attack at the time of the +strep culture...
  11. http://kidshealth.org/parent/infections/ba.../coxsackie.html In most cases, coxsackieviruses cause mild flu-like symptoms and go away without treatment. But in some cases, they can lead to more serious infections. Signs and Symptoms Coxsackievirus can produce a wide variety of symptoms. About half of all kids infected with coxsackievirus have no symptoms. Others suddenly develop high fever, headache, and muscle aches, and some also develop a sore throat, abdominal discomfort, or nausea. A child with a coxsackievirus infection may simply feel hot but have no other symptoms. In most kid
  12. it seems from what I've read on here, each child is different...and each episode is different... we are in our second strep episode and it is much less severe than the first...
  13. both times with Alex we saw a drastic reduction in tics on the third day of antibiotics for the actual treatment of strep. it took 6 weeks on steady prophylactic antibiotics (low dose 125mg per day Omnicef) before the tics completely disappeared and it was a saw-toothed recovery. we are in the middle of another 'episode' and tomorrow we finish up our 'strep' antibiotic (clindamycin) and Wednesday start a new prophylactic...we are in the saw-toothed phase now. But this 'episode' was much milder than the first so we are keeping our fingers crossed the recovery may be shorter. We are als
  14. Alex is also on zyrtec...no issues...but I am noticing it is not really helping during spring and fall and he still has a bad flare up...I notice some of you use it with Flonase...I am going to ask the ped about this today...as his strep is seeming to occur during allergy flare ups...maybe if we can stop the flare ups... *** Now...the neurologist said not to use decongesants like Dimetapp or any med with the "D" in it...like claritin-D....which contain pseudophedrine...he said for some reason it increases tic activity ...
  15. We had the pale skin and dark circles also...but both strep infections came in conjuction with a seasonal allergy attack...the dark circles are normal for him when the allergies are present...and that was his tell when he ate something he was allergic to that was going to cause him to throw up...all of a sudden he would get very pale and his under his eyes would get dark...and I would go running for a bowl... Anyway...if you are concerned about a sinus infection...nasal washes would be a good thing...they will get in there and clean out those sinuses... Keeping you and your family in o
  16. Thank you so much for the kind words...this being our second go round...and "knowing" what is going on...as well as knowing all of you are here...makes a world of difference... Alex is aware he is 'wiggling' again...we talked about it and I explained everything as to why it happens, 'some kids get strep and get a really bad sore throat...but when you get strep, you get these wiggles', I explained the difference between the two doctors he goes to...one for the 'strep' and one for the 'wiggles'...and told him all he needs to to is just needs to tell me if the 'counting' or 'even' stuff start
  17. Thanks Susan...good to know you use them...can you PM me Dr. O'Connor's phone number and info...I will definitely go down that route also...
  18. we moved to NC 6 years ago...and Alex received the majortiy of his vaccines on Long Island..except for the 4-6 year of OPV/IPV, MMR, and DTP/DTaP...and his last Varivax booster he received this past Feb...I have his entire record in front of me prior to the last chicken pox booster...and he never received Prevnar...it seems he received Hib at 2 months, 4 months, and 6 months...
  19. I wonder if staying on a really low dose is just asking for a resistant strain (that might have been killed off by a treatment strength dose) to come along and set up shop??? Just conjecturing. I've been thinking that myself...however..we were pretty sure it was working for a time...he was exposed to but did not develop strep during the summer and also had a mild cold/virus...both without any flare up of tics at all...the strep this time, developed during a brutal allergy flare up (despite being on zyrtec)...during the summer he does not suffer from allergies...his very first strep 'ep
  20. Hey Colleen, For the Cleo--1 1/2 tsp (7.5 ml) 2x per day for ten days, (bottle says 75mg/5ml)...so is that 225mg per day? and yes the plan is to start the Azith once this is finished...that Rx is not ready yet...all the nurse told me over the phone was 2.5ml Mon-Wed-Friday....I'll know more when I get it I didn't realize there were different strengths...thank you, that is really good to know...it may be temporary anyway as the new neurologist will hopefully have his/her own game plan... he was on 1/2 tsp of Omnicef 2x per day everyday since April...(bottle says 125mg/5ml) so basically
  21. Thanks again...and great news...I just got off the phone and both doctors at Northeast Pediatric Neurology treat PANDAS...I am having the paperwork started immediately... Meg's Mom...Dr. Nelson is our doctor...and the one who is moving... EAMom...you are probably right, it is a very low dose...we did a very low dose of Omnicef...since comparably he is very mild case...Alex is 53lbs. and about 51 inches tall.
  22. I don't remember which ones specifically...but will have them in my hands soon enough and will let you know...I just remember his comments...the strep titers came up elevated...but he did have a confirmed positive strep culture 8 weeks prior...that was what convinced him it was PANDAS despite the other test results...in hindsight I should have paid more attention to the labs...but i had a doc, diagnosis...and a course of treatment, so I didn't.
  23. Thanks everyone... memom...you hit it on the head...and thanks, just knowing there are others on this board who just 'get it'...is worth its weight in gold...I felt better once I put the words out there...tomorrow I start the calls... EAmom...2.5 ml Monday, Wednesday, and Friday...I'm guessing split into two doses per day...haven't picked it up yet... my neurologist office called me back...and told me to give Northeast Pediatric Neurology a try...they are in Concord, NC about 45 minutes from me...apparently one of his other PANDAS patients had mentioned to him that there was a doc
  24. We are in the middle of a 10 day of Clyndomycin now...seems to be working but too soon to really tell...just make sure your son drinks plenty of water with it...8oz with each dose...it is a pretty strong antibiotic. I don't have any advice on the IV...but Alex's bloodwork originally came back pretty low too...but our neurologist said he wasn't going to just go by the lab results...he was looking at the whole picture...OCD symptoms and tics following strep infection...meant PANDAS or some subset...his labs just meant he was at the low end of the spectrum...he just got strep again...and is t
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