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Hi friends - I was debating on whether or not to post this, as it is never my intent to come across as "announcing" any "eureka" protocol, as many of us have found physicians who are treating a little bit differently with good results. So, please take this info as more food for thought as we go through this miserable journey. Here's the scoop on dosages/how often, at least since last night! After another mom and I have had many back and forth conversations with Dr. B regarding dosages and comparing to the Dr. K dosage, his protocol vs. Dr. K's, re-explaining the half-life of gamma, etc., Dr. B once again called Dr. K on Wednesday about THE DOSAGE and spoke at great length. Dr B is "fluent" in immunology (excellent doctor) and can perfectly explain why 1 gram every 30 days is the scientifically sensible way to go, but he was reminded that we are using gamma for an off-label disorder, Pandas, and the same principles do not necessarily apply nor do they make entire logical sense. Dr B gallantly said to me on the phone, "I yield to Dr. K, he has been doing this for many more years than I have, but I want to help as many children get well as possible, so I will adapt and listen to whatever scientific, anecedotal and parental evidence there is to do that." He went on to say that right now the most frustrating part is that there is NO PROTOCOL for this and we are all somewhat flying by the seat of our pants, even Dr. K, and he was really pushing hard for future consortiums where pandas docs can exchange information, lecture on specific pandas issues, review clinical observations, etc...and we all completely agree!! Sadly our kids can't wait for all that data so we go with what we know, or think we know. Ok, with all that backup info, Dr B is more than willing to go to the higher 1.5 dosage (that Dr. K does) for all pandas patients. I do not know if Dr. B will do 750 the first day and 750 the second day or do it all in one sitting. Since my daughter has had the procedure 5 times already, he feels ok in giving it to her all in one day, slowwwwww drip. For a first timer, I am not certain and it may depend on each case. Dr. K and B also agreed that every 60 days would be the current best way to go with regards to "How Often" and that means Dr. K moved a bit on his every 3-4 months as needed and Dr. B moved from his "every thirty days" protocol. Sorry for the long note but if you're anything like me, I am always interested in the backstory of all these issues and decisions. It helps to understand that there are really good doctors out there trying very hard to get it right, not knowing each answer, but willing to move forward in the hopes of healing our kids. Thanks for letting me share!

I think the IVIG did lower her titers. Here's the puzzle...before we did anything to treat pandas -- no abx, no steroids, no ivig -- her DNASE was 960 and her ASO was 295, and she was not in the middle of what we would call an intolerable period, but we were coming off one when we tested. Fast forward to about 10 days ago and she got really bad again suddenly...then switched to azithro and better now. Dr. B feels the ivig is doing the job, but she was once again exposed and the augmentin was not strong enough to protect her and she had break-through strep. Even though the ivig is strengthening her immune system, she is still not strong enough yet to fight off an infection. (Her IGG levels now are at the highest end of normal and her pneumo strep 14 looks much, much better since prior to any ivig treatments, failed 13 of 14) We are about ready to try IV ABX as a next step prior to or after our next ivig to see if it can be beaten into submission. It's hiding in there somewhere. (My dd has had this since about age 2 and we started treating this summer, age 9.) Still waiting for my and hubby's results to make sure we are not reinfecting each other.

yes, better since the symptoms on the first post of this thread.

She's better after being on the Azithro now for a week...yes the titers ignited the symptoms very badly.

OK Friends - just got dd's ASO and DNASE tests back today after a really rough patch: ASO was 299, should be <150. DNASE was 480, should be <170. On a brighter note, her IGG is now in the high-normal range after failing 6 months ago and she is now robustly high on 8 of 14 pneumnococcal strep 14 when she failed 13 of 14 four months ago. Our problem is break-through strep and we are convinced it is intracellular. We are repeating the Dr. K dose of 1.5 grams per kilo next Wednesday, and if no gains are made we will do IV abx to try and wipe this out.

Yay Peglem...you have waited a long time for this and it's just around the corner! Keep us posted -- all the best!!!

Worried Dad! That is WONDERFUL news! I am so happy for you and your family! My dd also scored a 35 on YBOCS last summer and I can only pray and hope that someday we will be lucky enough to receive a score as low as your son. Quick question: Do you attribute the most progress from the AugXR rather than the IVIG? Do you think that it all could have been a cumulative effect? Again, so happy for you!!!

Friends - here's a brief update: We switched my dd from the augmentin to zithro and she has been on it for 6 days. She is SO MUCH better today...like night and day since last Tuesday, I can't believe it's the same child. When my child has had such a hard relapse it really shakes my faith in this entire thing. I question whether this really is treatable, if she is just plain insane and that's the way life is and I should stop deluding myself, and I lose all faith. But then to see such a change and the only thing that is different is abx restores my faith and hope that this is treatable and that I have to keep on fighting and trying until this is a distant memory. Thanks to all of you on this forum, I'd be lost without you!!!

who is Dr B? Dr. Bouboulis, Immunologist in Darien/Stamford CT. Treats many pandas kids, has consulted with Dr. K, Dr. T, and Dr. Cunningham, recommended by Dr. James Leckman at Yale.

I agree with PMom. Dr. B said no allergy shots until pandas is a distant memory...her immune system is already so compromised. I would be very careful.

She was on 1200mg augmentin. We just switched to 500 zithro today and took her for a blood draw...we are sure she she was exposed to strep. She is a bit better today, a BIT, but very high OCD.

Sadly, this is not a symptom of recovery for my dd---at least not right now---yesterday was a horrible day at school and later at home. Spoke to doc and we are switching back to Zithro today and rerunning all the blood work, including family member's ASO and DNASE. At least I know the difference between "sawtooth healing" and "exaserbation" because I have seen both now.

Great article -- copying it and passing it around school tomorrow and my pediatrician. Thank you!

My dd is 10. I did not even mention it to her this morning and she didn't to me either. It was hard waking her up for school today. Nothing bizarre this morning, however, she always eats a big breakfast (and had been doing so since our first ivig in August, prior she had a lot of food aversion issues) but this morning she maybe took 4 bites of an egg sanwich which took her 15 minutes. I tried giving her a chocolate munchkin and she took almost another 10 minutes to eat just half of it. It looks like what she was doing prior to starting any treatments....picky mouse bites. I hope and pray this is not starting all over again. I spoke to Dr. B this morning about this....he was a bit stumped...we spoke about hot flashes, sweating, fevers, etc., and he and I "theorized" that since this has happened for the 5th time in the last 5 or so weeks, that the body is reacting to an infection "strep" and attempting to eradicate it. IVIG stirs the good and bad antibodies and the bad are not going down without a fight (?) But her behavior has been generally a lot better after ivig#5 except for last night's 90 minute tirade....could be part of it. Bottom line, I call him again on Thursday to provide another update and we go from there.

My dd went to bed normally as usual tonite about 9:00 and fell asleep within 15 minutes. At 11:30 I heard her in her bedroom laughing hysterically very loudly (I call it the "bats in the bellfree" laugh that she had prior to any pandas treatment -- still haunts me), she was speaking nonsense...I thought she was dreaming. I went in to check and she was wide awake acting completely bizarro. I told her to go back to sleep and that it was very late. She proceeding to continue with the laughing, made up words, potty talk, screeches, squeaks, banging the wall with her foot, occasional "what are you doing, mom?" This continued for over an hour and a half. She has not been like this since last summer at her worst. She then said she was "hot" and came out here to the sitting room where I am. She was all sweaty and flushed and drank a huge glass of water. She seemed pretty lucid, and watched a bit of tv with me. She went back to bed about a half hour later and is sleeping soundly. I had posted a few days ago after reading some threads where kids complained of being very hot as they were perhaps close to or going through conversion. My dd10 has had 5 ivigs treatments and for the past month has awakened in the middle of night very sweaty (she is in light cotton pjs and regular quilt) or in the mornings with that matted damp hair. This has now happened for the 5th time in the last month. "Conversion" is one of those funny words to me in all this...a bit ethereal, and not something that I have read much about. Have any parents further up the chain seen this as their children's brains were healing?

This is interesting. Within the past 4 weeks or so, my dd9 has either woken up in the middle of the night all sweaty and she has on light cotton pjs and quilt and it is 68 in the house, or in the AM when it's time to get up her pillow is all moist and her hair looks like frankenstein from perspiration. This has happened about 4x so far and we have done 5 ivigs to date. It never occured to me that she was having a reaction...I thought each time she was perhaps on the verge of a cold, etc., but no.

When your child refuses to eat under any circumstance I think it sets off the panic button in all parents. Before we discovered pandas we watched my already slim dd slowly begin to refuse eating very much. We tried everything, but to no avail. She could not explain why she did not eat or was not hungry and never complained of pain or stomach issues, and heaven knows we had her tested for every allergy known. As soon as we stumbled onto pandas and began abx and a steroid burst, her appetite dramatically increased, and after her first ivig she ate everything and anything, and no longer appeared to have an aversion to crunchy or smooth and crunchy together, or whatever "thing" was causing the issue. She gain 8 pounds in 6 weeks after her first ivig and is gaining steadily -- in a normal growing way -- each month. She looks healthier, more robust and thriving for the first time in I can't remember when. I still sneak in a tablespoon of olive oil each day with her supps -- it's an easy way to get in 120 calories in one mouthful!

So today I tried "identifying" her repeated questions to her as "OCD questions" and I would not reply, other than to say that she was asking an OCD question she already knew the answer to. I think m-a-y-b-e she is beginning to understand a bit, but she is wise to upping the anti. Maybe just "any response" is enough to satisfy her itch, but I will have to watch it. I will try the tickets and the chart and see what happens. She is currently on 1200 mgs of augmentin (she's 10 and 60 lbs) for months, and we have seen other very nice improvements, but this is hardest to go. I fear that we have been "feeding" the questioning itch for way too long, as there were so many other issues that seemed greater, but now that we are down to mostly this I am regretting not trying to beat it sooner. I realized today that my dd speaks in mostly questions!! No wonder I am exhausted!

Thank you all so much for these suggestions, and that you have seen this in your kids as well and understand how exasperating this is. We are sitting in the family room right now as she is watching a home improvement show on TV...and the questions are coming (nonsense questions) fast and furious...I just asked her if she could just "tell" me that thought instead of forming it into a question. Instead of "What's that paint color, Mom??" I said, "Why don't you just tell me what the color is since you know what that color is?" She rephrased and said "The color is green." EEEEESH! This is going to be very hard...she is sooooo strong-willed about this. Sometimes it seems like she almost "enjoys" the aggitation that this brings. Thank you again for your thoughts, I really appreciate it.

The strongest compulsion my dd has is repetitive questioning or statements rituals. My husband and I do not know how to help her get out of them and it usually ends up making us crazier than we already are. Here's an example: I will ask my daughter to put her shoes on as we are preparing to leave the house. She dilly-dallies and I ask her again. Still no shoes on. She is sidetracked with saying goodbye to the dog, still no shoes on. Then, I will ask her again in a more forceful voice (but still calm) to put her shoes on because we are leaving. She will then ask, "Are you mad?" I reply, "no." She says, "Because I want to make you happy...are you happy?" "Yes, I am happy." BUT, if I say "I am FINE or OK, or just YES" instead of using the word "HAPPY" in my reply, she will then say, "Are you mad...I want you to be happy!!" She will NOT STOP until the word HAPPY is used. I can switch topics, and she will come back to that until the word "HAPPY" is said. If I completely do not give in she will often start to cry, melt down, escalate the tension and this happens over and over and over. If she even slightly THINKS I am a bit cross or just tired or don't respond in just the right tone of voice ABOUT ALMOST ANYTHING, she will again begin the "MAD/HAPPY" ritual. It can go on for an hour, or intermittently all day. If we could eliminate that alone, life would be SO MUCH BETTER! I have read about ERP and understand how it works for objects, like fear of scissors, or handwashing, etc., but what about verbal compulsions? Do any of your kids do this? Any suggestions?

Hi Melanie - yes, we did abx with steroids. There is a recent thread called "steroids" -- if you haven't already done so, take a peek at them and I think you will find some stories which will be helpful is assisting your decision-making.

Hi, I really do think there is something to IV antibiotics and there have been several threads here and there talking about it. When my dd was in the hospital 2 years ago for a horrrible upper respiratory infection she rec'd iv abx. By the time she was well enough to come home it seemed like all her symptoms disappeared for a good 4 months or so. However, we had no idea what Pandas was at the time nor that the the iv abx had anything to do with the wonderful stretch we were having. Looking back, we feel the dosage was high enough for long enough and directly into the bloodstream that she received tremendous relief from it. However, symptoms returned with a vengence with no proper follow-up abx or ivig or anything to continue the healing. I know Dr. B was willing to try iv abx as part of my dd's ongoing treatment, but Dr. K and he consulted and it was strongly recommended not to do iv abx and ivig at the same time as the abx would negatively affect the gamma. Now, it's not to say we could not add in iv abx perhaps a couple of weeks after ivig treatment, but we have not gotten to that point just yet.

Oop - meant PMom, not Tmom!

TMom - 203-655-9904 recpt is stella.

OMG! Yes, my dd does this a lot...almost to the point of my having to scratch my head wondering who remembers those little things so clearly? Like the name of the tile guy who laid the tiles in the bathroom when our home was being built 6 years ago. Or what we had for dinner the last time so-and-so came over, last fall. She remembers so many detailed things, and yet she struggles at times with learning new math concepts at school, or remembering certain sight words that she sees a zillion times. I have often wondered why she can to so well with the details/memory of not-so-important stuff, and other frequently repeated concepts are so much harder for her.