JAG10

Hi Philifolks, I work for a Montgomery County School district and have facilities privileges (free), let's just say near Abington, but not Abington. The students haven't even started yet, so September might be tough with all that. Let me know... Jill

I like your glass half-full thinking, EAMom!!! Lord knows our kids certainly deserve to have some good fortune come out of this ######.

I would agree with Kelly's highlights. He throws the child off guard and mixes in very simple questions too in order to see how/if they rebound. When he asked my dd10 how old her sister was, she looked to me unsure and confused when she clearly knows how old her sister is. Be prepared to wear your poker face or "pretend" you are busy with papers or something. It only takes him a few minutes to size up your child, 5-10 tops. The rest is time answering your questions. I felt sooooo much better after meeting with him! Let's face it, flying halfway across the country to meet a doc you've only spoken to on the phone an hour and you are about to hand over your child and 5 figures in dough.... it takes guts and a certain level of desperation many of us have shared. My daughter was ten, had been on psych meds for four years, had no history of strep except high titers and I had no clue about sudden onset. He knew right away and without any hesitation or doubt based on her clinical presentation that she had PANDAS and has been there for us ever since she had her IVIG in the end of May. I would at 14 weeks post her only IVIG she is 75-80% better and psych med free! Best wishes for an uneventful procedure and recovery! jill

You are so right about the emotions!!! I remember after the 2nd day of IVIG dropping off the rental car at O'Hare and both of us taking the shuttle to the airport with feelings like Sally Field in Not Without My Daughter seeing the American flag at the embassy....ok a little dramatic, but the feelings are very dramatic. Such a long journey literally, emotionally, for many of us our kid's entire childhoods wondering and researching "What's wrong and why?" How can you not feel like an emotional dishrag after that? Then the weeks start to go by and you realize, you and your child may have reached a turning point, but the journey continues, it's not just 'over.' But the hopelessness begins to shrink the more distance you put behind you. Best wishes and prayers for recovery! jill

Ann, Hey! Was Dr. K saying it was like the dilated pupils... indicative the autoimmune process is in motion, but not a sign of strep itself? Is that what you mean? So, it is not irrelevant.

are you a.o.k.?? Yes, it greatly reduced any pharyngeal illness; sore throat, swollen glands ect. As an adult, it took 3 weeks to recover, I lost 15 lbs (which I had to loose It seems ENT are very reluctant to pull them out now. We all have them out on both my side and my husband"s.

It says there are photos attached, but I don't see them....

I had my T&A surgery as an adult (21 y.o.) Dr. T found it significant that I had chronic pharyngitis and needed that procedure into adulthood. He said it was an indicator.

Thank you! I emailed the ENT who has agreed to be the "technician" to remove non-pandas dd7 T&A to ask if he will send them to pathology and he agreed. I will let you know if anything interesting is discovered. jill

Wait..you're saying your child always cultured negative, but analysis of the tonsils after they were removed revealed strep?? Was it difficult to get them to analyze the removed tonsils? What exactly did you ask them to do? My non-pandas dd7 is getting them out next Friday even though the ENT isn't crazy about the idea, he's willing to do it based on the pandas specialist's recommendation. Dd7 has never cultured positive either, but runs high titers and last bout had classic strep throat symptoms and PANDAS dd10 did also react. I asked the ENT why the girls wouldn't culture positive and he didn't know why except to question whether it was strep. I can't remember...do they put all children on antibiotic after T&A?

I should clarify my PANDAS dd10 has her tonsils out already. It is her non-PANDAS little sister who has the big tonsils and the constant sore throats. It was suggested that the younger ones will need to come out eventually and since there is a PANDAS sibling living in the same room with her, sooner would be better than later. The vacation had its low points and high lights. A low point being dd10 was so out of it, she put her shorts on with no underwear and her shirt was on backwards and she was absolutely clueless she was walking around the ship like that. But by the time it was our last night on the boat, dd10 was getting back to her baseline and running around the ship with friends she had made. It was those days of not knowing...are we on a downward spiral with no end to it or will the Augmentin do its job and smack down that immune system back into place. It did its job, but in the meantime the parental anxiety is torturous. The wagon incident is normal kid stuff that just seems like too much when you add it on top of all the other stuff we manage with our kids.

Hi Friends, 3 weeks ago, I left note dd7 had classic strep symptoms right before we were heading for a 10 day vacation. Although she swabbed negative, Dr. K managed to help me get both dd7 and PANDAS dd10 (10-11 wks post 1st IVIG at the time) on full strength Augmentin before we left for FL and then a 7 day Caribbean cruise. On the abx, dd7 improved in a couple days and I thought dd10 had dodged a bullet, but then the separation anxiety began which lasted two days and stopped. I thought, OK...that wasn't so bad, we jumped on it, no prob. By day 5, the OCD, behavioral regression, cognitive fog that makes my heart sink began and lasted through day 10 (by day 9, I was crying my eyes out and emailing Dr. K from the ship!) Day 11, dd10 was great again and then days 12-13 the same separation anxiety that started this episode ended it on the other side of this wave and we were done. This wave and crest of symptoms may sound familiar to many of you, but for us (we've been a chronic state of FUBAR for years) this was a new phenomena 12 weeks post IVIG. I would say dd10 lost a step of her progress as a result of this exposure, but is quickly back on the road to cognitive recovery this following week. So, we get home last Sat., dd10 begins field hockey practice this week. Gets to see school friends she hasn't seen in awhile, wants to socialize, great! Wednesday, after her school's stationary sale, she asks if a classmate can come back to our house for the afternoon. Sure!! No sooner do we get back to our house, the two girls run out the door. I call dh to let him know we are home and I hear the wagon rolling down our street. I run out the door to yell STOP but before the words can leave my lips, the wagon flips over with both girls spilling onto the asphalt. I run out on the lawn yelling "Who thought that was a good idea?" as both girls pick themselves up, then I notice it; large drops of red blood pouring down Court's shirt. I look under her chin and there is no skin there!! Grab a towel, throw all three girls in the car and off to the ER we go. Turns out dd10 has a fractured wrist, several abrasions, the worst being under the chin, but there is no skin left to stitch. So, the rest of this week we have spent bouncing back and forth between ortho and the plastic surgeon. She will be fine, it is healing well and under her chin, so no scar would really show anyway, but I'm convinced this kid is ###### bent to get all the bad luck of a lifetime out before she's a teenager!!! She must have skidded her chin across the asphalt because her lips, mouth, teeth, ect. were fine. She has a loose primary tooth, but that was already in the works before she "Fell off the wagon" ( yes, I had to embarrass her by using that corny line at every opportunity!) {The other girl was completely fine, btw} Also, Friday I took dd7 to ENT to be evaluated to have a T&A. He said her tonsils were large, but so what. So, then I go into the shpeal about her bringing strep home and getting big sis sick over again. He said that while he cannot recommend a T&A, he has respect for infectious experts in PANDAS and the ###### PANDAS families go through AND that he is willing to be the technician who removes them, but he can't "recommend" it. FINE. And he schedules her for two weeks from now. Am I crazy to do this? I really think it's just a matter of time anyway. Everyone in my family and my dh's family have their tonsils out-all of us. I was 21 when I got mine out, but I just kept getting pharyngitis. So, I've spent more time talking to, visiting and emailing doctors in the past 6 months than the rest of my lifetime combined, and the last week being quite a doozy! This week I keep saying "cm'on Humpty Dumpty, time to go to the doctor again" just to try and keep a sense of humor! I'm an SLP in an elementary school and very ready to go back to work to get a break from my "vacation!"

Vickie- These are so cool!!!! To add a name or additional coin, do you have to click "Request Custom Item?" I didn't see an opportunity to "add-on"...did I miss it?? WHat does convo mean?

Ahhh...but will SOT make the DSM-5 in 2013.........

PAN complex begs to be twisted into Peter PAN complex...... I guess not that far off considering all the behavioral regression!!

They can call it sh*t on toast if I don't have to feel like I "scored" every time I leave the pharmacy with abx!!!!!!!!! I got them for both girls, BTW. Yea!! Now I can go on vacation!!!!

She also said if you treat strep too early it can make it harder to get rid of??? Is that true?? SHe said you have 10 days to treat strep, but Dr. K said to treat immediately and both girls.

THAT IS HYSTERICAL bcs the name of the practice has the word "Cowpath" in it

He can, I'm just waiting to hear back from him. Do you know this doc was so adamant about not giving me abx unnecessarily, she almost insisted on giving them to us in liquid form so we couldn't "save" any? When my dd7 piped up and said she didn't want liquid, she tersely looked at me and said "I want your word you will stop and throw the rest out if the culture comes back negative?" WHEN is that darn white paper coming out?!?!?!

Do you think he'll mind calling this in this time considering I tried???

WD, I thought the proportion went 250/125, 500/125, so that two 250 mg tabs of Aug had twice the Clav of one 500 You can do two 500mg Aug and not exceed the daily max 250 Clav, but you couldn't do four 250mg Aug, bcs that would be the same 1000mg but twice as much Clav. Am I right or all screwy

Is Augmentin 250 mg + Amoxicillin 250mg= Augmentin 500mg??? I'm trying to figure out if I have enough to get both girls started while I wait for these scripts to be called in...

SO ANNOYING!!!!!!!!!!!!!!! dd7's rapid was negative. Dr. sent the culture, did not want to treat her until it came back, would not treat dd10 at all; waved hand in the air and said we're not talking about PANDAS. Then, gave her Dr. K's (email) recommendations for treating BOTH girls; very nasty, scribbled wrong prescription and said I must throw it out if the culture is negative. I told her she could call him and she said NO. She handed me one script for dd7, 1000mg of Amoxicillin and stomped out of the room. This is not what Dr. K rec', he said 500mg Aug for dd7 and 1000mg for pandas dd10. DD7's symptoms: fever 101.5, nausea, cherry red tonsils and adenoids, patches on adenoids, painful swallow; ears, nose and chest clear, no congestion or cough. I emailed Dr. K, hopefully he will call in his rec' and save the day. Looking for new Pediatrician when we come back from vacation. Philamom, do you like your ped???? I'm not fighting, just firing. Literally, she spent 5 minutes total with us, didn't want to be bothered whatsoever. I like the girls' regular ped, but she has two small kids and only works 2 days/week. It just isn't going to work.

Wow, Joan!!! Sending love and prayer your way.

dd10 got the 7pm doooosey headache too! In the reports coming out of the OCD conference, it was reported that Dr. K had treated 100 children with IVIG and I thought that had to be off! He did 6 the week we were there too. But he travels a great deal, has many patients in other countries, ect.