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Everything posted by beeskneesmommy

  1. Start with Augmentin, which is an Amox and Clavulanate combo. Sometimes it takes the whole 10 day run to see a decrease in symptoms. 30 days would be better. Blood draw for both Strep and Mycoplasma as well as Lyme to start. More sensitive tests should come later and for goodness sake, get an appt. set today with a specialist. They have very long wait lists. It is tempting, when the issue resolves, to move away from it and cancel the plan to get hooked up with a specialist. Don't do it! Having the people you need in your back pocket for the future is a beautiful thing if you find yourself in an emergent situation down the road. Where are you located? Most of us travel for docs but here is a list of physicians who treat: http://pandasnetwork.org/resources/providers/provider-list/ This site also has an international list and other resources and info. It is one that I recommend often.
  2. I do not know that this is true. We use alternating Tylenol and Ibuprfen during and post IVig. My son has no problem with Tylenol, but Ibuprofen is the appropriate means to utilize as an anti-inflammatory.
  3. Carolinas PANDAS Parents Support group: https://www.facebook.com/groups/196042083811437/ Please feel free to join us if you are a parent or grandparent of a child diagnosed with PANDAS/PANS. You MUST reside in either NC or SC to be a member and you must be a parent or grandparent. Thank you
  4. Hi - I run the Carolinas PANDAS Parents Support group. If you are not already a member, please join us and you may find some further resources. Link below. There are 2 docs in Charlotte: Dr. Corbier: http://www.neurologywellness.com/ and Dr. O'Connor https://www.facebook.com/OConnorAllergy. You are welcome to PM me directly for further info. -Kath Carolinas PANDAS Parents Support: https://www.facebook.com/groups/196042083811437/
  5. Good luck and prayers! Can you give me the name of the CO LLMD please?
  6. get an appt. w/Dr. Latimer in Bethesda and an immunologist (we see Dr. Bouboulis in CT) to work in conjunction w/your LLMD. Your son needs to be on antibiotics longer than 1 month.
  7. Amox alone is worthless for us. However, Augmentin is "souped up" Amox with clavulanate acid. This is an appropriate Strep attacker, but did not hold out in longevity for us. The best combo (for us, bit not for everybody) is Augmentin and Azithromycin (this is the same as "Z-pack"). This combo was a game changer for us. Also, a short run of Rifampin will go after Strep and many people (including ourselves) have reported positive results.
  8. I kind of think that's where Dr. B is going with it and also he way i feel, but wanted to check in for a more seasoned opinion. I may have mentioned this, but Diflucan is our magic bullet for the clean-up sweep so to speak. DS has had elevated Candida, maybe still does - need to get another draw on that soon, but we do longer runs of 35 x 2 (35 doses in a bottle). School structure and GF are helping as well. 1st 2 days of school last week Th and F a kid each day went home early from his class room with fever. DS is still looking good a week later. THAT is amazing! We are shelling it out to send him to a private school, much smaller, that is willing to cooperate with our health concerns. Hopefully it will be successful because it is the last chance. If he gets re-exposed numerous times this year, I will have to pull him out and home school. Many reasons why that would not be optimal! On a diff. note, I came up + for Lyme (Igenex). I have been suspicious for a while. I am going to run thru several weeks of Doxycycline and hopefuully knock it out. Again - not lit up like a Xmas tree, but IGM 31+, 41 + 39 IND, I have had weird stuff going on for a couple of years that a neuro was never able to diagnose...so of course sent me on my way. Also intermittent joint pain, fatique, etc. Most of the time I push on and I AM 49 with a 6 year olf PANDAS kiddo and all of the trappings that come with, but i just kept feeling like something wasn't right. Anyway, won't hurt to see if the the symptoms go away with abx. Don't mean to sound flippant I know how serious it can be - thus starting with some doxy. Glad to hear your kiddo is doing well and as always, thank you for your thoughtful ideas and assistance!
  9. Well, this is purely IGG and nothing on IGM except 41 ind. basically, when he first had Lyme pos. results (not strong, but a few bands on both IGG and IGM w/Igenex, that was in 7/2011. At that time he was treated with daily azith and also Augmentin for the Strep. he continues that protocol to this day. 5/2012 the Stoneybrook test was negative and then this most recent Igenex was what I posted above. He has made great progress although has had some backsliding since the most recent IVig 14 weeks ago (however is doing pretty well again as of about 1 week ago - started GF diet 11 days ago). He continues to have leveated Myco titres IGG only, always betw. 125-150, so not glaring. Dr. does not feel this is a concern. And, of course, the Strep, which I have always considered primary. Titres go up and dow, usually at least a little elevated and I am part of the problem - Our other specialist put me on a year of Penn VK to protect him from myself! As for symptoms, typical PANDAS - flares when exposed to illness, especially Strep, freq. urination just before flare comes on, intermittent ADHD, chorea (at its worst, not every flare) tics, occasional brain fog, waxing and waning OCD. The chorea, tics brain fog and OCD have improved considerably over the last year. the OCD comes and goes in intensity still and there are occasional bouts of significant chorea when in flare....hope that helps. I know Strep is a current culprit as evidenced by recent blood work, but I want to make sure I am not still dealing w/Lyme and Myco. i am suspicious of the Myco but I am told not to be concerned about it. Thx!
  10. Mine has been igg + for myco for years. No igm. It started with walking pneumonia post PANDAS dx in 10/2010. Our specialist, an immunologist, does not feel that it is an issue as igg and the count stays betw. 125-150. DS has also been on Azith for over 2 years. In addition, i have understood that band 41 + is common and if alone, not to worry about too much. What are your thoughts and your doc's ideas on this. Our elevated Myco igg has always bothered me....
  11. Hey LL moms! Talk to me about Igenex IGG positive for the following: 31 Indeterminate 39 + 41 +++ In 7/2011 DS was Igenex positive for both IGG and IGM. It was not a Christmas tree light-up. In 5/2012 he was Stoneybrook negative for IGM and may or may not have been pos. on a low level for IGG. Most recently, 8/2013, he is Igenex Negative IGM and and the above, positive IGG. I was not that worried about it because it seems low level, but i want to double check. Thx in advance!!
  12. Where are you located? I know an immunologist in Charlotte, NC. Dr. Maeve O'Connor. She is very interested in PANDAS and has recently started a clinic. Here is her link: https://www.facebook.com/OConnorAllergy?ref=br_tf
  13. So happy to hear this A 4 year path does not seem terribly long to me, hah! It's amazing that I still have my sense of humor, perhaps, like you, because my son is not nearly as ill as when we received the PANDAS dx in June 2009. The stuff hit the fan Sept. 2010, right around your kiddo's time. It's so good that you write to remind everyone that our kids can get better, lead happy lives. Here's to your wonderful son! I sure hope the date went well
  14. Any doctor, no matter how young, who doesn't know what RF is, simply must have gotten his/her degree out of a Cracker Jack box. There are many who mistakenly belive that it "has been eradicated with modern medicine" (thx CDC), but to not know it at all is very strange. Sadly, I have no other advice than to get to Dr. B or another specialist (sounds like an immunologist is the best bet) and check of other types of infection in addition to Strep. I am sorry you are having so much misery! I hope that your appt. w/Dr. B is coming up soon!
  15. Never tried Mino. Can it be used w/Augmentin and Azith? Actually, the other specialist who put him on the Clindo/Rifampin run specifically instructed me to drop the Augmentin but to keep ON the Azith. I was not aware of those side effects. Thx.
  16. he did test + on a lower level (10) for Candida before the IVig. The Diflucan was wonderful, but when the bottle ran out pre 2nd IVig, I stopped it for a long time because I knew the Rifampin was coming after the IVig (Doc's idea was to do the Clindo/Rifampin to "blow out any residual Strep"). Can't do Diflucan w/Rifampin because Diflucan is rendered ineffective, apparently. So it had been a long time that he was off the Duflucan, many weeks, but I did not think it would spiral OOC to any huge extent since the blood work showed that the Candida wasn't terribly high. Re: Rifampin long term, Dr. B said it shouldn't be done - He said it should be used always with another abx in conjunction and "in and out" pretty quickly. I will ask him again when we talk. Thx!
  17. Hi all: DS almost 7 had an IVig last Sept. he had a bumpy road for several months, still with flares, but less frequent and less severe after a while. I saw little improvements week after week thru the winter. By about mid January, he was doing very well and his symptoms were such that only I could see them and they had become infrequent. We were pretty happy for a consistent period of time. Life felt smoother than it had in a long time. However, because he was not 100% and still had mild flares occasionally, the specialists we see recommended another IVig. We did this with optimism in mid May. However, he has been consistently worse than before this 2nd IVig and his flares are more frequent and more severe than when he leveled out before. Two things changed: 1. I was told to put him back in school afterward, no need for isolation. I isolated him anyway for the rest of the IVig week (infusion was a M,T) and for the whole week following, but put him back into school after that. I then had to take him in/out of school several times over the next couple of weeks d/t possible Strep exposure reported to me by school staff. 2. One of his docs took him off of the Augmentin and put him on 30 days Clindomycin and 14 days Rifampin. he also remained on daily Azith throughout. During the combo of all 3, he did really well. When the Rifampin dropped off and he was finishing up the Clindo along w/the Azith, he went down hill very fast. Bad symptoms from the old days started to show up like wildfire. On the 29th day of this, I dumped the Clindo and put Augmentin back on board, still keeping the Azith. Within 12 hours I started to see a difference and within days he was doing quite well. We continue on the old stand by, Azith and Augmentin combo. However, he has been flaring much of the time with pre 1st IVig symptoms. Among other symptoms, hyperactivity and chorea that had previously fallen off is back. We are now at week 13 post IVig and I still maintain that he has not gotten back to the place that he was before this 2nd Ivig. I just drew for Igenex Lyme/Bart, but the Rifampin and the Augmentin making such a diff. seems to suggest Strep. The kid has been on daily abx since Sept. 2010! He has been on the Azith/Augmentin combo daily (except for the month long Clindo disaster) since July 2011! I will be talking to one of his specialists on the 27th (next week). I need to ask for another abx, I think. I would like Rifampin, but I cannot get that long term. What about Biaxin? This would be in adition to the Azith/Augmentin that he is currently on. Any other suggestions? I want my kid the way he was before this 2nd IVig! Could the product have been tainted? I insist upon Gamunex and it was a good full dose of 2g/1k. just like before. Admittedly, his pattern of recovery after the 1st IVig was that it took a long time for great success to kick in, but there was forward progress throughout, after the first 4-5 weeks that accumulated to a pretty good place. Oh, also, he has been back on Diflucan for about 6-7 weeks just to get after any yeast issues that might be in there d/t long term abx use. He has historically always done great while on the Diflucan/Azith/Augmentin combo. WTH??!! Sorry this is so long but I have been at this with slow, difficult forward progress for 4.5 years...until the past 13 weeks! I got nothing but suspicions and speculations.
  18. I do not know much about bed bugs except that they are awful. When I worked doing home visits for Medicaid, I ran across them. I had my husband meet me at the back door with a trash bag and stripped off my clothes in the back yard, put them and my brief case into the trash in the alley. I just want to say I am so darned sorry! Sometimes it does feel like a "magnet" situation. I remember asking Dr. L.: "C'mon, Strep infections > PANDAS, then Myco after the T&A and Lyme on top of it all? What are the odds"! Unfortunately, she explained why the odds were good. Hang in there and know that you have a huge amount of sympathy from me!! Ugh!!
  19. Silly me! DS looked better this morning and then went down hill this afternoon and evening. He was a mess at bed time. I could kick myself 50 times for letting him swim last Wed. at camp. On a good note (skewed thinking from PANDAS Mom) he appeared to have a low grade fever tonight. I thought that yesterday he felt a little warm as well. At least there is a "concrete" reason for it instead of the usual reaction to exposure only. Not sure why this feels a little better to me...off to his 1st day of 1st grade in a new school on Thurs. He has a drop in "meet the teacher" on Wed., but I am less concerned about that. I have 2 days to get him leveled out...YES! I AM tired of PANDAS!
  20. Yes, hah! One of our well-known PANDAS specialists made the following comment to me: Interesting how physicians who are mothers suddnely belive in PANDAS when their own child "gets" it (meaning onset). Yes, it is! I have had a few docs over the last year ask me for information. Quite refreshing..one of them is a pediatrician whose son has much the same symptomology that my son exhibited early on. She still doesn't get the importance of treating immediately, however - seems to buy into the "growing out of it" theory of old.
  21. I have not given Ashwaganda to DS, but I have been using it myself, nightly, for a long time! It helps take the edge off for sleep. I have also tried GABA, at hlaf a dose in the morning, which made me uncomfortable and clammy to start, then mellowed me out, then cause extreme thirst and fatigue by the afternoon.
  22. Hi. i felt like my heart was breaking for you when I read your post. in am so, so sorry! It sounds like at one time your son responded well to SSRIs, not always the case for our PANS kiddos. It is not unusual that SSRIs need to be changed after time. I have not practiced in almost 7 years, but when I did, Celexa was one that was often helpful with the kiddos I worked with. There may be something better on the market now. I am not a physician and I am certainly not giving medical advice. rather, just a thought to bring to the psychiatrist - Here is an article about "SSRI-induced indifference" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989833/
  23. Hope everyone is having a better day today. Surfmom good for you to get to the salon! I make sure that I am a "natural blonde" every few months or so. I am always surprised at how I feel during the time that I sit and quietly read a magazine with foil on my head. It's like a feeling of wonder: "Oh yeah, wow, I had forgotten what it feel like to do nothing and to be relaxed...just for me". So, I propose that every one of us pick some time over the next week to do something just for ourselves. Thx for putting up with my venting. I send warm, healing thougts to you all!
  24. Interesting stuff... http://en.wikipedia.org/wiki/Transfer_factor
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