Lisa1971

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.

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's the pre-existing condition exclusion which I think still in in effect for a few months... SO before I go pushing up an appointment (or move to nebraska )...I figured I would check with all of you... If this is common....I feel comfortable waiting it out and bumping up his prophylactic dose as his last neuro had me do once before... His end of grade tests are in 10 days so this couldn't have come at a worse time... oh...and yes...he can take ibuprofen...what dosage do you recommend? He is 9 about 57lbs... thanks again, --Lisa

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 Zyrtec The teacher just told me today that the child who sits next to him was out Tuesday with strep... So, my question...can simple exposure trigger an exaserbation coupled by a hightened immune response to the allergies?

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 he would treat with antibiotics, etc. (whatever it is that you are hoping for). He was the one that tested for the hhv6 virus and high titer for it but he was not big on trying the treatment for it. Our Ped went ahead and ordered valtrex to give treatment a try. Lisa, who are you going to see there, do you know? Susan Susan, I was hedging toward Dr. Corbier...only because he is the only one I have received some feedback on...but I guess in the end it will depend on whomever can see my son before June when the current course of azith runs out...and we need our next course of action...if it took 7 weeks for them to send me the paperwork to fill out...I am not hopeful on getting an appointment anytime soon... --Lisa

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...

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 through random others...sniffing, throat clearing, ect...but the finger wiggles and shoulder shrugs are his constants... last episode all tics were gone completely about 6 weeks into the antibiotics...this time seems to be taking a bit longer...which I have heard is common...but we are definitely seeing improvement... Best of luck with your son's recovery... --Lisa

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.com/what-is-the-chicken-pox-vaccine.htm did any of your peds ask about or seem concerned about any autoimmune conditions in your family history before administering the vaccine...mine didn't.

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 time!! Here's my word of the day...."OPTIONAL"...as apparently when it comes to PANDAS the medical community has decided...it is optional whether or not to believe it exists, optional whether or not to treat a patient with it, optional as to what the best course of treatment is, optional as to whether or not to treat the underlying cause, optional as to what the underlying cause actual is, optional as to whether insurance will cover said treatments.....and apparently when it comes to their hippocratic oath...and doing what is in the best interest of the patient...turning their back on a sick child...is also an option... sorry...I've had my fill of ignorant doctors and incompetent administrators for the week... --Lisa

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 me that they treat each case specifically, and that they usually start with supplements. So, I'm going to go interview them, but I am not confident as to whether this will be a solution for us or not. I may also just start looking for pediatricians and see if they will consult with Latimer and at least be the antibiotic/steriod side of the puzzle, as that is our main treatment at this point. I remember, Claire, that you also mentioned Dr. James Lee? Would you recommend him at this point? Thanks - Susan Dr Nelson recommended NorthEast to us too...waiting on the referral paperwork to go through...I was told by Tina, Dr. Nelson's nurse that his partner Dr. Wallace does not treat PANDAS period...she flat out refused to take Alex's case...we have an Rx of Azith to last us through June (which is when we had previously decided to test taking him off them completely)...my pediatrician is still being a jerk about the whole thing so we are now on the hunt for a new one of those also... On a positive note...Alex's latest episode seems to be on the decline...and never progressed past shoulder and hand wiggles... I am wondering, though...if Dr. Nelson is going to be replaced...and if so if we can get lucky enough they get another PANDAS neuro...all my doctors are in the Presbyterian network...and Northeast is CMC...which is slowing down the process....luckily both are covered by my insurance...

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...

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 kids, the fever lasts about 3 days, then disappears. Coxsackieviruses can also cause several different symptoms that affect different body parts, including: Hand, foot, and mouth disease, a type of coxsackievirus syndrome, causes painful red blisters in the throat and on the tongue, gums, hard palate, inside of the cheeks, and the palms of hands and soles of the feet. Herpangina, an infection of the throat which causes red-ringed blisters and ulcers on the tonsils and soft palate, the fleshy back portion of the roof of the mouth. Hemorrhagic conjunctivitis, an infection that affects the whites of the eyes. Hemorrhagic conjunctivitis usually begins as eye pain, followed quickly by red, watery eyes with swelling, light sensitivity, and blurred vision. Alex had coxsakievirus in kindergarten...two years prior to any PANDAS symptoms...he was also exposed to Hand, foot and mouth 2x in pre-school, but never developed it...

Me too!!!!

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...

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 also switching to Azith as the prophylactic...which apparently works differently than the penicillans....

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 ...