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Kimflow

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Everything posted by Kimflow

  1. He started back on rifampin last night. and I have a bunch of other medicines to start treating Lyme/bartonella?. I am very hopeful. And it doesn't stop us from getting the IVIG for the chorea,pandas....in fact she said that if you don't treat the Lyme first, then there is the potential for the IVIG not to work as well as it should/could. I am not sure sure how long we treat the Lyme before we can go to the IVIG. Regarding tonsillectomy...yes, it could be flare but weird that the flare didn't start until Day 4 postop and it was the first day off of Rifampin and on Augmentin. I tried t
  2. Emily, I was in your position. I just drove to any doc I could find that would help me. I drove to New York doctor and got zithromax 250 mg every day for immunomodulation because my DAN would only give it 250 mg ONCE a week. I drove to 90 minutes to an LLMD when I needed someone to order LYME bloodwork. Look at PANDAS network for their list of doctors....or you can also ask here for doctors in your neighborhood that are PANDAS friendly.Or could you show the doctor a paper on teh zithromax that is immunomodulatory such as Dr. Schulman's article. I don't know what things you can take
  3. SF mom, our story is convoluted, that's for sure. With the Clindamycin followed by the Rifampin, we were treating PANDAS that would not respond to other antibiotics. The Rifampin seemed to be the charm. We are under care of PANDAS Dr. L and in the mean time, I got Lyme and coinfections done. Came up only exposed but immune to Parvo and lyme bands 41 and 66 positive. I saw LLMD and asked for CD 57 to rule out Lyme before we went on to IVIG end of June for PANDAS. Today I see lyme, pandas, and autism person at NIHA. I hope she has some answers and yes, I hope she puts us back on Rifamp
  4. Cobbie, Sorry it is a tough time right now. As I am trying to keep my head above water also lately, I would say....look for some of the blessings that remain. that is what I do. It is difficult to watch your child suffer. I know. And I too know that sometimes as a family, you feel forgotten. Force yourself to look for your blessings that remain. Help your son to do this too on the days that aren't so dark for him.
  5. Well, riding the rollercoaster again. After multiple failures with different antibiotics, something about the Rifampin seemed to work a miracle or maybe it was the combination of going through the "die off" with clindamycin and then the rifampin. By the end of this 5 weeks, our son has many of his symptoms diminished. Now we did the tonsillectomy and day 1 and 2 he was the same. By day 3, he seemed to go downhill. slept 12 hours. This was the last day of the rifampin. Day 4 postop of tonsillectomy, we started liquid augmentin. Verbal triggers, choreiform movements, everything is bac
  6. 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 tr
  7. 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
  8. bumping this as I was wondering if anyone remembered what IV antibiotics their children got during tonsillectomy.
  9. Love this story too. Congratulations.
  10. Hi, What kind of IV antibiotics were given during your child's tonsillectomy? Thanks, Kim
  11. I am thrilled for you too, Jaco. It is nice to be happy! Interesting what you put about the wheat and your thyroid.
  12. Tpotter, How is the LDN going now? I am curious. Kim
  13. 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
  14. 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, an
  15. 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 sta
  16. 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. GOo
  17. are you using the inositol to help with ocd......how do you get your dosing information? Could you expand more on this? Thanks.
  18. 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.
  19. You didn't say PowWow am I crazy for doing the tonsillectomy before IVIG?
  20. 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 himsel
  21. 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 cho
  22. 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 cho
  23. 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
  24. 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
  25. 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 helpe
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