Kimflow

Short version: autism 7 years, PANDAS diagnosis March 2012, Tonsillectom/Adenoidectomy May 30th, now in PANDAS flare even though IV ANcef during procedure and po antibiotics following T/A. IVIG supposed to be last week of June, Yesterday, CD 57 came back at 24 which was ordered after Western Blot had 41 and 66 come up positive. Finished Rifampin (which seemed to be the one that finally worked or stopping PANDAS/strep symptoms) and this am, went on Augmentin again which was to be until IVIG for PANDAS/Syndenhams Chorea last week in June. For us, that is now on hold until we coordinate treatment for Lyme. SO this am I gave him his first dose of Augmentin. Within 2 hours, he started to complain of pain in right foot. He said HURT and as I tried to make it better and look for why it hurt, he continued to be in more and more pain. He never says HURT unless it is severe pain. He pointed to bottom of his big toe and by this time, tears were streaming down his face.....I put him in Epsoms salt bath to distract and detox. I ran cold water over it to distract. Once I started to think about it.....coupled with the CD 57, I got activated charcoal in him. Then in about 15 minutes, he was due his Lortab that he was given for tonsillectomy pain so that got us out of the woods. I am just learning Lyme. I do know they say it hides in joints. Could this have been Lyme die off for those of you who have children who can talk about their herx symptoms???? I shoudl mention that during the failed courses of amox, keflex, 5 days of zithromax, ........I woudl notice that he would have horrible exacerbations of his chorea with the initial dosing of zithromax for about 5 hours after dosing and also saw this happen during hte first days of augmentin which he was on for PANDAS before DR. L switched him to Clindamycin and Rifampin. And agian not so coincidentally, I think they may use Rifampin, Zith, and Augm. for Lyme. Thanks for any thoughts. I just went through an introduction on PANDAS board in March and now here introducing us. Everyone has been so so helpful sharing all their experiences. has made our road move much more precisely and swiftly because of hte information shared. ThanksKim

Hi, I am trying to find out the name of the doctor who is doing the culture and sensitivities of Dr. L's patients who have tonsilletomies? Everyone is on vacation and our tonsillectomy is scheduled tomorrow. I need the name of the doc. so I know how the specimen has to be sent. Please PM me. Thanks, Kim

bumping this as I was wondering if anyone remembered what IV antibiotics their children got during tonsillectomy.

Love this story too. Congratulations.

Hi, What kind of IV antibiotics were given during your child's tonsillectomy? Thanks, Kim

I am thrilled for you too, Jaco. It is nice to be happy! Interesting what you put about the wheat and your thyroid.

Tpotter, How is the LDN going now? I am curious. Kim

Nancy, We ruled out everything but Lyme. He has the two bands..41 and 66. Saw a LLMD who works with Deb McCabe (I could get in sooner) and he ordered CD 57 which I will have drawn while he is under next week during tonsillectomy. I had to move my McCabe appt. to July 2nd now which will be after IVIG. I suppose if I have concerns about results, I can call LLMD before IVIG is done end of June. So much to coordinate. I saw my son do some different things today. Maybe the Rifampin is going to do something. I so so hope. Kim

Nancy, I had read that too....that it becomes quickly resistant. I wonder how quickly.....in 2 weeks??? I did manage to find that rifampin is applicable to strep organisms as well as staph. We have been prescribed it by Dr. L for only 2 weeks and as I mentioned this was preceded by Clindamycin for 3 weeks. Then he will have tonsillectomy and begin augmentin. All along he has been taking zithromax 250 mg for immunomodulation so I doubt this would count as second antibiotic. Oh well, cross my fingers and pray that the rifampin works, bugs do not become resistant in 2 weeks, and that the tonsillectomy removes a large source of bcteria as well. Kim

My son has been on numerous antibiotics that fail at day 7. We saw Dr. L and she put him on Clindamycin for 3 weeks...again we saw breakthrough symptoms start at around day 9. We continued clindamycin to the end of the 3 weeks. He is now on day 3 of rifampin. I am seeing in addition to the earlier PANDAS strep symptoms that started to come back on teh clindamycin, now I am seeing more choreiform movements, the urinary dribbling that started on the clindamycin remains, seeing facial grimace, more trigger words. Does Rifampin kill strep.......I know she put him on it to kill any staph in the tonsils but does it also kill strep????? If it does not, then I need to call her and find out if I can add back Augmentin to his rifampin and his zithromax 250 mg immunomodulating dose. Thanks for your input. Kim

Cobbie, We are stuggling too to find the answers...just starting treatment down the road. It is incredibly difficult to keep spirits up. I have decided to jump through less hoops. For example, today I decided we weren't going to jump through the school hoop....it causes me so much stress to send him to school and I can't imagine how he feels. So maybe see if there are some less hoops y ou can jump through. LLM, we also do the think of hte blessings you still have even though life sucks. What else can you do? I believe that you will get in sooner....in 9 weeks someone might cancel. GOod luck. Kim

are you using the inositol to help with ocd......how do you get your dosing information? Could you expand more on this? Thanks.

I have a question....not sure I want the answer......Does Dr. L do PEX on all her kids after she does IVIG???? She said PEX to me today and I just let it wash over me. I still have to face tonsillectomy and then IVIG with my son. TO think PEX yet......well, I was not ready to even think about that today.

You didn't say PowWow am I crazy for doing the tonsillectomy before IVIG?

Well, update as things around here change literally every couple hours..... good news that the IVIG was approved for diagnosis of syndenhams chorea....they looked at medical records too that also said PANDAS. I think I am leaning towards getting the tonsilletomy done next week as maybe it will remove the persistent source of strep. Not the orginal plan for sure. It was supposed to IVIG then tonsillectomy while IVIG on board. Then we can recover, have our vacation and do IVIG after vacation. I refuse to take away our only vacation as it is a time when my son really enjoys himself and our family too actually gets a sort of break. Remember we too are dealing with autism. At the ocean, a few weekends ago, he seemed to escape the PANDAS while he was on the ocean. he also escapes the autism on teh ocean too.....no talking required, just ride the waves. Loves the water. I dont' know if this is the right decison or not as I am risking a PANDAS flare by taking out tonsils before having IVIG on board.????? And yes, I agree, it does all come down to immune system. When I see Dr. L today, I am going to ask her which she prefers me to start first...immunovir or xymogen. I have to do more than just probiotics and what else I am already doing about immunomodulation. Finally....steroids.....I am loathe to ahve to go to them. I worry that we still are determining whether the 2 bands positive for lyme are really lyme. Of course, he is going to get steroids for the IVIG....Lyme doc. said that is just something we have to do. So what do you think? Am I crazy for doing the tonsillectomy before IVIG and our vacation. I'll see what Dr. L says this afternoon.

Well, after multiple courses of antibiotics fail to control the PANDAS/strep, we went to clindmaycin for 3 weeks.....I would say about 8 days in as usual we started to see slight breakthrough symptoms. Then about 14 days on clindamycin, I saw the eye squinting and the verbal triggers come back but atleast the verbal triggers were easily worked through....with no tears. Now we took the last clindamycin pill today. His lips are again irritated(I have come to view that as indicator of his body fighting PANDAS) and he had several tearful upsets for triggers words so far this morning and his choreiform movements have returned. I am beside myself. We are to go on to Rifampin now for 2 weeks. I hope that works because Clindamycin was supposed to be the "bomb". We are waiting on IVIG approval and tonsillectomy. Like I said, I am just beside myself having rode a rollercoaster again. I talked to a Lyme doctor the other day who knows PANDAS too and he thought a good treatment for PANDAS was Augmentin daily and then Bacillin shots either weekly or monthly. Big deep breath. I know there is not much anyone can say but just keep plugging along. I think once the two weeks of Rifampin are over, I will ask to go back on Augmentin daily until tonsils out and IVIG. Kim

Well, after multiple courses of antibiotics fail to control the PANDAS/strep, we went to clindmaycin for 3 weeks.....I would say about 8 days in as usual we started to see slight breakthrough symptoms. Then about 14 days on clindamycin, I saw the eye squinting and the verbal triggers come back but atleast the verbal triggers were easily worked through....with no tears. Now we took the last clindamycin pill today. His lips are again irritated(I have come to view that as indicator of his body fighting PANDAS) and he had several tearful upsets for triggers words so far this morning and his choreiform movements have returned. I am beside myself. We are to go on to Rifampin now for 2 weeks. I hope that works because Clindamycin was supposed to be the "bomb". We are waiting on IVIG approval and tonsillectomy. Like I said, I am just beside myself having rode a rollercoaster again. I talked to a Lyme doctor the other day who knows PANDAS too and he thought a good treatment for PANDAS was Augmentin daily and then Bacillin shots either weekly or monthly. Big deep breath. I know there is not much anyone can see but just keep plugging along. I think once the two weeks of Rifampin are over, I will ask to go back on Augmentin daily until tonsils out and IVIG. Kim

I have been quickly researching.... I found notations that Tagamet is an immunomodulator in mucocutaneous candida...whatever mucocutaneous is? Mucous membrane and skin I would suppose. I also found notations that some people can have neurobehavioral syndrome from withdrawal of tagamet....something to do with prolactin. Pepcid study in kids with autism done...by a Dr. Linday. Here is interesting cut and paste. The dose seems higher than the box would instruct you most likely. With your son's reaction to Tagamet and then the other prolactin artcile and also that other moms on here have had luck with pepcid, I might try Pepcid instead. I have MD appt. tomorrow. Here is cut and paste. Kim Med Hypotheses. 1997 May;48(5):381-6. Oral famotidine: a potential treatment for children with autism. Linday LA. Source College of Physicians and Surgeons, St Luke's-Roosevelt Hospital Center, New York, NY 10019, USA. Abstract Famotidine (Pepcid, a histamine-2 receptor blocker, is marketed for the treatment of peptic ulcer disease, gastroesophageal reflux, and the treatment of pathological hypersecretory conditions, including the Zollinger-Ellison syndrome. Recent reports indicate that it is also effective in relieving the deficit (or withdrawal) symptoms of adults with schizophrenia. Autism, a neuropsychiatric disorder which presents within the first few years of life, is defined by deficient social interaction, communication, language, play, and a markedly restricted repertoire of activities and interests. Similarities between the deficit symptoms of schizophrenia and the social deficit symptoms of autism suggest the hypothesis that famotidine may be useful in treating children with autism. Histamine serves as a neurotransmitter and neuromodulator in the brain. H2-receptors in the brain predominantly transmit inhibitory signals; when these receptors are stimulated in animals, spontaneous activity and exploratory behavior decrease; blockade of H2-receptors would therefore be expected to reverse this inhibition

I remember reading on here that a mom had accidental success in reducing pandas symptoms when she gave her son pepcid to reduce reflux. Interestingly enough, when I saw the LLMD yesterday and told him I have a son who has high histamines but can't tolerate any antihistamines or even quercitin, he suggested Tagamet OTC at bedtime only. He said it reduces histamines in gut and then overall histamine (not sure how). SO wondering do I try the tagamet or do I use the pepcid instead that is H2 blocker that someone on here found success with? Any thoughts? Kim

I too have started to consider what else we can use to immunomodulate besides the Zithromax. I know about LDN but am also have heard that there is an initial getting used to it period. but at this point, I'll get through it if it will help us immunomodulate. I have played this game of bugs versus antibiotics before only instead of strep in the throat it was clostridia,klebsiells, yeast, etc. in the gut. It was exhausting so I gave up trying to treat gut with antibiotics and focused on immunomodulation which stopped the round robin of antibiotics...........well, a strict diet also helped. So here I am back again in round robin of antibiotics....time to learn from my past......So we have LDN. Actos is antiinflammatory (maybe immunomodulator). I also have Immunovir and Xymogen IgG sitting on my kitchen table....have been unable to decide which one to start as you can get some herx from them I would imagine also. Also confused on how that will play into/affect IVIG that is currently waiting approval. Any thoughts....Tpotter, have you thought of any of these or others?

Airial95, thank you for the info. on sawtooth pattern. Our last rx for prescriptions were provided by Dr L, pandas doc. Three weeks of Clindamycin and then followed with 2 weeks of rifampin. Since the IVIG approval is still waiting on approval, then I will have to call in to find out what to do after the antibiotics are up after rifampin. I really don't want to be off antibiotics as I know how it is ON antibiotics. I will ask for 30 more days of some type of antibiotic. She wasn't totally thrilled with the Augmentin due to the clav. acid...and maybe because my son is small although it does seem like alot of PANDAS kids take augmentin. Anyhow, rambling. Lots fo things to think about.

LLM, I just read your post above MOM24. yes, I am seriously considering the biofilm theory. I am going to check out your link. I have previously done Usman's biofilm protocol for the gut bugs...it seemed to help....but honestly what helped gut status the most was immunomodulator. This was all before PANDAS. The inflammation that has come requires additional immunomodulation.........maybe it is time to try LDN. I am just not sure how this all fits in with the IVIG ang tonsillectomy picture. I previously has not tried becasue there is a period of adjustment that some kids have with the LDN. but at this point, have to keep thinking of additional ways to immunomodulate. Kim

yep, I am pretty sure if I swabbed him right now, he would have strep. I will ask for this when I go to the Lyme doctor tomorrow. I am certain though that either the zithromycin 250 mg a day is immunomodulating part of the PANDASresponse to the nondead strep and/or the antibiotic is still killing some strep, just not all as it may have been in the beginning. Who knows? Maybe could be that some strep could be coming out of biofilm for some reason and that is why we see downturn always at day 7. It is just one more burning question now to replace my prior burning question I always had. I always use to say if someone would give me a dime for every time I have wondered why my son's lips were peeling off in sheets but not bleeding and it was always worse in the winter yet no chapstick would help I would be rich. Well, with the diagnosis of PANDAS and the commencement of antibiotics, the peeling lips are gone. So lips better but PANDAS now. Oh my! :-) I did hear from one parent that they were on the same clindamycin then rifampin rotation and that the rifampin seemed to help the most, then steroids. Kim

Mom 24, So strep on clindamycin....did he tell you his throat was sore???? We have been through zpack, amoxicillin, keflex, augmentin, and all have failed at day 7...strep/PANDA symptoms came back. Now have been on Clindamycin 10 days as well as immunomod. zithromax 250 mg. At day 7 again, the strep symptoms came back. PANDAS symptoms are flaring. I haven't had him swabbed because what else can we do? There aren't many other stronger antibiotics. There must be a reason why the strep continues to come back WHILE ON antibiotics that initially worked but then fail. We are waiting on IVIG approval. Hopefully someone elses immunoglobulins with help. Tonsillectomy planned too. I know it is maybe only temporary help but atleast it removes one place the strep can hide. Kim

Has anyone used Manuka honey and felt it helped even a little to address strep? I imagine difficult to balance to not incrase yeast. I am off to google this. Thanks.