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Everything posted by Kimflow

  1. We too were struggling with the steroids/no steroids question. The info. I got back from others when I posted my question was that some use it, some don't. Lyme IgM bands 41 and 66 only came back positiv. Then we did CD 57 which was 24 highly suggestive of TBI. He already has autism and pandas that is unresponsive to abx. Then I read that CD 57 in young children is unreliable so on to get Igenex test done tomorrow for further comfirmation. Still we are lined up for IVIG next week for Pandas, synde. chorea. We have had some abx treatment for pandas/lyme and we have to help his immune syst
  2. LLM, Would you have time to give me your thoughts on the following: Inositol 5 htp St. Johns wort Currently we are using 5 htp and St. Johns wort. Looking to see if there might be a better solution for anxiety/OCD. have not tried Inositol. have not tried tryptophan. Thanks.
  3. Oh my gosh,,,,,,I just have to say that assistant principal is a real burr under the saddle already. It also doesn't sound like she is going to be very understanding of PANsPANDAS issues. You could be the first one to educate them but as I mentioned before, after 6 years in public school that was for the most part very supportive, I am exhausted by all the meetings,red tape, rules and regulations that make no sense for my son, intense communications necessary to make them understand his anxiety/ocd. I wish you luck......Maybe you should switch to talking to hte principal as right no
  4. so if you are diagnosied with pandas, syndehams chorea, does that mean that someone should have sent us to cardiologist????? Should I pursue this? Thanks.
  5. Socalmom, After years of ocd/anxiety that flared every winter and that was always attributed to "autism", due to PANDAS flare versus PANS flares, we finally figured out he had PANDAS/PANS, Lyme, probably bartonella, maybe babesia. After all these 6 years of sending him to school and what I have asked of him already, there is no way I can send him back now knowing that he has all the medical issues. However, I have known for a while that he will learn better if we do it our way. At school, all the federal rules about inclusion....well, much of the day is wasted stressful time for him.
  6. Orion and philamom, Things change here in a matter of 24 hours. Dr. L's officer calld today to say that he can have the IVIG. I faxed her the hard copy CD 57 of a 24 as well as his tonsil cultures yesterday. Maybe the huge reservoir of bacteria in his tonsils after months of antibiotics changed her mind. Now I am worried about what to do about the iv steroids. I asked her about this and i suppose she has made her decision on teh new orders that she faxed to infusion company this morning but I have not seen them. Once again, I have seen two schools of thought.....no steroids i
  7. MMC.....our tonsillectomy was completed on May 30th. Our tonsil cultures came back with heavy growth alpha-strep, heavy growth gramp ositive rods(other wise known as corynebacterium, pseudodiptheria)., heavy growth nonpathogenic neisseria, heavy growth strep constellatus. Regarding the HI(is that the same HIB that they vaccinate for????) I wondered when the pseudodiptheria showed up. I haven't had much time to research much but this stuff isn't normal flora I don't think or if it is, it takes over in immunocompromised. And heavy alpha strep STILL AFTER 3 months of various courses of u
  8. Many thanks for all of your input. Turns out life steps in. After I wrote this email, I got a cancellation appt with LLMD and asked her if we could go ahead with IVIG that Dr. L had written for his PANDAS and Syndehams chorea. she said yes, we had atleast treated Lyme /Bartonella/? with 4 months of various antibiotics....He has been on various antibiotics for strep that also treat Lyme since March. So then I call infusion company to tell them I can go ahead with infusion and they tell me that Dr. L has to sign off again because of the Lyme/Bartonella/?. At the office visit where she
  9. Hi, When this whole PANDAS started for my son and he had exacerbation of choreiform movements (severe after the first several hours of zithromax) moms told me to consider lyme and other TBI. This may be just one explanation for you. Has he been tested for Lyme/TBI? Second, the air hunger I believe is one of the symptoms for lyme, babesia, or bartonella as these are the lists that I have been reading...I just cannot remember which one. Or it could all just be OCD related but something to think about. I would think that if you are seeing this though it may very well mean that you are killi
  10. Bulldog24, I added the augmentin AFTER the tonsillectomy PANDAS flare.....so the adding of the augmentin does not seem to be causing any herx. It is just the tonsillecotmy that started our second pandas flare. I did see die off when we added diflucan but only two days and it was very mild. Thanks.
  11. orion.....this is encouraging to me. Thank you for writing. regarding Steroids and IVIG and Lyme......I just meant that in Lyme, they say to never give steroids but with IVIG, they usually DO give steroids. I hope that makes sense. Thanks. Editing: forgot to say that one Mom has written me to say that for her child, IVIG caused 4 months of herx. I do not believe they knew the child had lyme at the time.
  12. Hello, I posted this also on PANDAS board....need help to make decision by tomorrow. Our history in a nutshell: autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week.
  13. Hello, Our history in a nutshell: autism age 2, PANDAS diagnosed March 2012, Dr. L prescribed IVIG which is approved and was to be for this week. He has syndehams chorea. Still does. We did the tonsillectomy May 30th which even though we gave IV antiobiotics, he is now in a full fledged flare. The chorea is extensive again as it was for the first pandas flare. The OCD, the need for repeating things he says, the motor sensory triggering, it is all back. Our vacation was so stressful this past week. It took 3 months of various versions and courses of antibiotics that would work
  14. ptcgirl, Would y ou share wtih me how you proceeded with treatment? You mentioned PANDAS, tonsillectomy, Lyme, IVIG???? In what order did this all transpire. We had pandas, were scheduled for iVIG but came up with low CD57 and now in Lyme/Bartonella treatment *very early....and to top it off, after tonsilectomy May 30th, are in huge PANDAS flare. It has been recommended to treat the lyme/bart. but this flare is horrible...the syndenhams chorea is back very pronounced, as all the other pandas symptoms. On Rifampin, zithromax, added back in Augmentin tonight, and also diflucan and nystatin
  15. Hi, Two things jump out to me with your post based on our experiences with PANDAS, then lyme, bartonella all in 3 months time: 1. Did they test for Bartonella when they tested for other coinfections. Did they do a CD 57 through Labcorp? Alot of feet "things" in my son.......plus an extremely low CD47 were clinically suggestive of Bartonella. Although I would have no idea why the bartonella would only come out in April. Probably not likely. 2. The lyme practitioner we are seeing said that sometimes it is only after treatment that you start testing positive for coinfections. 3.
  16. Hi, I just happened to look up Nystatin becasue we are supposed to start this after the diflucan and it says DERIVED from streptomyces? SHould I be concerned that this will cause PANDAS flare as I found the streptococcus thermophilus did in the VSL3? Thanks.
  17. hug2day... Just wait until I add in the Diflucan on Monday...oh my...... Yes, I am betting we have a little of both going on...PANDAS and bartonella die off. However, even when he had strep and I did not know it, it was definitely not the same level and length of time he stays in panic re: OCD/anxiety. he eats ALL day long....little snacks. Blood sugar should be good and I am happy to say that he is now eating meat again so I guess the throat is feeling pretty much better day 8 postop. clostridia.....good point. When Ryan had high DHHPA, I always questioned whether he had clostridia be
  18. Oh my gosh, thank you both for replying as I have been almost out of my mind lately with trying to figure out what has happened. he was almost 75% better and then we did a tonsillectomy. For three days after tonsillectomy, he was fine. Day 3 the night, he slept 12 hours and then all heck has broken loose. It looks like PANDAS flare adn I thought well maybe even IV ancef didn't prevent flare. But maybe the stress of the surgery has allowed the bartonella to come out or more likely from what you are telling me, it is die off. We were on Rifampin 2 weeks before tonsillectomy and it seem
  19. WOuld anyone share what bartonella die off looks/feels like for their child/themselves? And what relieves it? Thanks.
  20. I am wondering if anyone can share examples of different kinds of bartonella die off. What did you do to ease the die off too if you have any suggestions?
  21. Son had tonsillectomy. Day one through three were great. Day four we switched to augmentin as was the plan and all heck broke lose. I thought it was the augmentinbut apparently it is flare. Day 6 we went back to Rifampin. This is Day 7 and he is having so much anxiety related OCD, choreiform movements. This is horrible. We are pretty much back to square one except we dont' have the ankle touching and tops of feet bilater pinching. We had an incident at playground and all of us came home crying. My daughter, myself, my son with tears and my husband would have cried but he held it in.
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