DsMom

My son also is/has been on LT ABX, and suffers from constant dark depression. But he's been completely cut off from his life for 2 years since the PANDAS bomb dropped, I'm bummed out too, who wouldn't be? It began with his first trial on Zoloft (wasn't Rx'd for depression) and at same time he did a steroid burst...all went down hill from there. Our only positive results have been from Ibuprofen 600mg 3x day....and very very small impact atmthat. All SSRIs hes tried only escalate and increase his darkness. Start low and go slow are wise words.

We have tested for Lyme and coinfections for the last 2 years...in fact Infectious Disease doc just left our room after telling us that all the testing he's gone through are negative, whicch of course we knew, and that he's been treated by enough ABX now to effectively 'treat' any Lyme/Co-infections he might have had, but this doc, as with almost all the other MDs doesn't feel he ever had any....we did Klinghardt's regime as well... the docs are either in one camp or the other.

Hoping the wonderful folks on this forum might share thier insights with me since we have absolutely no preconceived ideas about how this is going to map out for our boy, and Dr. L didn't give us any expections We are at GTUH for DS13s PEX and yesterday was 'day 1'. About an hour after he was done the itching sensation he has all his waking moments (moves all over body, considered a tic) amped up to insane intensity and he started to jerk and twitch, which I havent seen him do for months and months. Now he's super worried he's going to get worse and worse with the next 2 treatments to come. He woke at 3AM w/ vital signs check and was just sobbing he feels so bad, stess level is soaring and anxieties ramping of course too. Has anyone else seen a child react similarly w/ PEX? He has been diagnosed w/ Lyme and/or coinfections due to a bullseye rash following an unknown bug bite 2 months pre-PANDAS crash, but neg on CDC and IgenX tests, but bands found seem to indicate he's 'had' the infection...almost 5 months on Klinhardts Lyme protocol and 7 months on minocycline per Dr.T are only treatments so far but we do have a LLND on our team. Thank you for anyone's thoughts, means a lot to us.

I have gotten all my scripts immediately filled by Dr. T if the pharmacy FAXES in their request for the refill. That is how Silky coached me to do it and they haven't skipped a beat if they receive a fax. Dr. T has helped us, but has also dropped completely off the radar over the last 3 months. Virtually no response to urgent emails, phone calls and the like. I too felt 'dropped'. But I understand he has had a family emergency and a deposition or some legal issues to deal with during this time as well. Not making excuses, but I think he takes on too much and he's just stretched too thin, and all of our kids are usually at crisis point when we are working w/ Dr's like him, right? So it's a bad combo. That said he's uncovered some good info for us and ruled out a ton of things as well. All things considered I would work w/ him again. Good luck, and there is a comprehensive PANS/PANDAS doctor directory on the pandasnetwork broken down by state which may be helpful if you are considering changing providers?

My DS13 was 12 when he had the T&A. His is also a complex case, but we couldn't rid the Strep so we had him do it. It was rough, and he still had strep after he recovered, but after 6 weeks of Clinda following he hasn't gotten Strep since. He's not healed, his is tic based and it's a slow ship to turn. But I would definately have him do it again, no questions. Wishing him an easy procedure and a speedy recovery if you go forward. Erin

I have DS13 who loves it that I wait on him hand and foot - supps, food, what ever it takes. Of course he feels like crud all the time. I get wiped out and angry/frustrated too. I feel guilty as heck when I snap, but seriously you are entitled to letting out a bit of steam here and there when they act stinky. Since they are teens on top of thier illness and hormones are raging Im sure that is the icing on top their cake of heck, right? Don't beat yourself up, he has already forgotten it and it just shows what a great Mom you are that you are still feeling bad about what happend. Enjoy the celebration and hang in there.

My DS13 is 6'2" 150, he gets 600mg 3x day (every 6 hours), now for 6 months. I hate it but its the only thing I've found that helps, even though its only a 'tiny' help...(Dr.T suggested the dose). Hope it helps your DS.

I apologize as this is off topic but: T.Mom, Can you PM me? LLM suggested I contact you but I can't PM you for some reason, although I've tried quite a few times. If you can I would surely appreciate it, and then perhaps I can reply since the system won't let me contact you directly? thanks in advance!!

Augmentin didn't make my DS worse, but definately Biaxin and Azith did...and I'm not thinking it was herxing either. So I agree with LLM and LaruenK; I think that while a herx can defiantely happen some of the kids are just super sensi to some of the Abx's.

I don't think you can post pix here, but not totally certain. But, my ds got a bug bite, started as a super small red dot w/ a puncture (single) mark that progressed to a small raised target like shape and then spread until it was probably 4-5" in diameter over 6 weeks. I took him to the Dr 2x and they had no worries but gave him a 10 day Rx for Abx at the initial visit (we are in the PNW and no one, especially me, thought of Lyme). We have been 2 to specialist and recently Mayo - all agree he's had/has Lyme. My advice is that I wouldn't mess around, look at pix on the web and if it looks like the rash, which can vary in size and shape, then take her to a LLMD. That said I got a spider bite about 7 weeks ago, have been on ABX myself and it still is red and hurts today. So, it could just be a 'bite' on your dd, right? But a trip to the Dr might still be in order... Good luck for a speedy resolution.

FWIW my DS is PANDAS, w/ tics and Vit D and Omega 3s are big triggers....

My ds13 has not been able to tolerate Vit D for the last 16 of the 22 months he's been on this roller coaster. The Vit D makes his tics worse, as well as his mood/ depression totally tanks when he takes any Vit D supp. Also,with Omega 3 oil supps....for what it's worth....?

It definitely took a few days for me to see any lessoning of severity in symptoms, and they aren't gone, just 'less than'. Good luck, even the small victories count.

D'sMom here: yes, DS13 is on 3 Ibu - 3 times a day. I have tried to scale him back but he starts to become sadder and wackier... We had been Rx'd 2 Ibu 3 tImes a day two times previously over the first 12 months of PANDAS but it did nothing, it took the extra 250 mg added to the dose to impact him. So, after Dr. T Rxd the Ibu dose at 3, I queried DS's Rheum Dr about dose and she said No Biggie, much higher doses are common for kids with arthritis, etc. Plus, my boy is TALL, 6'2" if not 6'3" by now, but trim. He's maybe 160 lbs I think. Maybe their size impacts the dose that helps? Also, we do believe he's got Lyme, and/or a Bart coinfection, but we just found out he's got a potential mold induced biotoxin infection (his C4A results were over 89,000) so that's first line of attack right now, hope to see traction there soon so we can re test for Bart, then try to treat before potential PEX in Oct. Hope the Ibu can help your DS, even if its only a tiny bit.

Steroids 4 times during first 12 months, first run = no reactions pos or neg, next 3 run successively were worse as all symptoms (rages, tics, neurotic behaviors, talk of suicide began) ramped way up and then stayed up. Scared to death to try steroids again, ever! I then read on the NIMH PANDAS page that steroids can exacerbate a tic-presenter vs. the OCD presenter. Sigh. The IVIg's maybe have helped, hard to know as we saw nothing of note immediately but have seen a gradual lessoning of demon voices, completely losing it type behaviors, and he is more mentally 'here' than he was 12 months ago, but he's also become even more sad/suicidal, deeply depressed. His PANS has debilitated him, no school for 2 years, cut off from friends, etc. Monster of an illness as we all know. Also, many thanks for the book ref Dedee, on my way to find it.

No seroquel, at least not yet. Have Psch appt early Aug, so will see what comes out of that meeting, new Dr. so I'll ask. My DS is hyper nervous to try anything since he's plummeted into black hole too many times, even Vit D and Omega 3 are death spiral for him... We are trying to get PEX lined up, 2 HD IVigs havents been the ticket, but trying to make sure he's not got occult infections still at play, and he might have biotoxin illness, so like you we are peeling back the onion best we can. Hoping you get your DS some relief soon~

I think laughing could be a tic, my DS13 itches (it's always moving and stops when he sleeps- which says to me it's neuro and we've all but ruled out all other systemic origins, altho Bart could be at play here which we are truing to run to ground) and I'm sure it's a tic, so why not laughing? My DS was perfecfly normal too, until he developed itching overnight, pos for Sretp A and then the onslaught of pysch stuff just stared cascading down on him as well. The ONLY thing I've seen any pos impacts from, and I'll admit it's a very tiny positive, is from ibuprofen. Dr. T Rx'd 3 doses of 750 mg a day ( he's 6'2" 155 lbs). Other than that the psych meds we tried made him way, way worse. Hang in there....

Finally we are at the point my gut told me we needed to be at over a year ago w/ DS13. He's been incapacitated by PANDAS for over 19 months now, we're working on Lyme, working on biotoxins but his dopamine is SO high per recent Cunningham we really need to try PEX. IVIg 2x with little, if any changes, but his is tic disorder so always back to PEX. Do any of you vets out there have a doc and or locations that support PEX? Working with Dr. T on this since he will prescribe but I can't sit around and wait, I need to get something moving fast. The risks are worth it as my boy basically hasn't been able to leave the house for almost 2 years now, is severely depressed and suicidal. Love this forum, and all the wonderful members who help me with information I'd never be able to dig up on my own.

Dr. T recommended we try Stanford clinic for DS13 who needs PEX. I spoke with them yesterday and they will not be treating out of state patients when they do re-open. The referral is to a pyschiatrist who is on the list at PANDAS network.org. Is anyone aware of any Dr's in the bay area that are open to PEX? We are in Western WA and we are willing to travel of course, but west coast would be so much easier on DS. Thank you if you have any rec's.

LLM, Yep, we did the test for Pyroluria, he was borderline (our test was slightly diff than yours if I remember correctly; DS was an 11 and at 15 our test is considered positive). He's definitely low zinc and something might be up with the copper too. We just tested for copper levels and hope to have results today to discuss w/ Dr. T tomorrow. DS was on Core (BioPure) for at least 8 months with no changes, but as a result of one of your last posts on a question of mine I am back to supping zinc for him. I also sup EPO, but not O3s because the itch, tics and crazy all go up when he has very much of it. Also the D3 seems to cause similar reactions in him so I'm just keeping any concentrated doses of it away from him. I've been on the fence about the 23andMe only because I don't know if I will be able to figure out what all the results are going to mean. I am trying to channel you on a lot of this but honesty its just so much. That said, I need to get it going. I was going to try to PM you but I don't know how, so I'll just share this in case you aren't already aware of it as I believe you use BioPure Core. Nature Pure Nutrition is a BioPure on-line retailer that is located in Florida, & they discount all BioPure that they sell, We were doing Sophia Healthcare's (Klinghardt) regime for many months and we saved a lot shopping at NPN> now they are offering a flat 20% off w/ a coupon code THANKYOU20 and free shipping on any amount for the next 30 days.

Thank you all for the recommendations. LLM I always like your thoughts because my DS and yours seem to track somewhat similarly. That said, I think that Ultimate Flora might have made him feel itchier. I agree, a nighttime dose is optimal and we always strive for that time and an additional one in the day for good measure. With him always on an ABX of some sort the last year it makes me nervous if he's not taking probiotics. CDiff is always in the back of my mind, and yeast, I don't even like to think on that either. I think Omega 3 is just going to have to be tabled. I do have him taking EPO, and zinc again. No change of note of course. Wish I could say that there has been.

Just changed DS13's nightly probiotic from HLC High Potency to Ultimate Flora and I swear he was worse after. I have also thought on occasion that he might be worse after the HLC as well...which is why I wanted to change it up and see if there was any improvement. I also changed his AM dose from HLC to Culturelle, which I think he's tolerating pretty well. But, I know so many of you wonderful people have already trialed so many I wanted your advice. If you have a tic child are there any Probiotics you have tried that have made things worse, and any you have tried that made things better...or at least didn't escalate behaviors? Also, just was reading an old post where Beesknees had mentioned going w/ a low dose Omega 3 sup if child is sensi to O3's, which mine is, and I have just basically given up on D and O3;'s due to the crazy that occurs after. But now I'm wondering if there are any rec's on that front as well. We don't do gummy chewables because he won't touch gelatin (vegetarian at age 8). As always, I am so thankful for any suggestions.

My DS had small red raised bumps on trunk 2 days before he crashed, and I think it was a strep thing. He's had the rashes continue off and on for the entire 17 months he's been affected. I'd watch for signs and get a throat swab ASAP if she shows any of her PANDAS behaviors. But, honestly it could be unrelated...I sure hope it is.

One more note re/ Dr.T: we just did genetic testing via him, found a few abnormal genes we're flupping on, DH & I now waiting for our DNA results to overlay. But, during debrief on labs Dr. T said 'well, he has the PANDAS gene'. Like you we have struggled so long to make sense of DS issues, it was a bit validating to hear. Dr.T read Ds's IgenX Lyme tests and deferred to thier 'negative' findings, but also said he couldn't really say definitively due to the IND and ++ bands present...And that's not his forte', so working with LLND to rule out any bug stuff. So, the Courtagen DNA testing might be one validation you can try, and we only do phone consults w/him as we live in WA. Like the others we have a PANDAS specialist ped, a LLND, psychologist, another counselor and Dr T working on DS. I would add immunologist, but only ones in WA are @ SCH, so thats out. We most likely we will add more until we can get him back to healthy. I feel for you. Good luck.

My DS had a definate uptick in all his anxieties, anger, tics, etc. w/ Biaxin...so your 19 yr old might be reacting to that as well, or has he been taking for awhile? Since you said 'had started' I'm thinking he's new to it? I moved DS13 off after 3ish weeks to Mino ( per Dr. T) and he calmed down to his 'normal', which isn't great but sure is better than non-stop flaring behaviours. Good luck