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Everything posted by beeskneesmommy

  1. This testing is not a bad idea and could yield more info, but with the respiratory history, I would have him tested for Mycoplasma Pneumonae ASAP. This is a known PANDAS/PANS trigger.
  2. I had the same issue. My son and I followed each other up and down thru strep and high titres. It's very likely I also had PANDAS as a child. Our specialist put me on a long term dose of augmentin (my son was already on augmentin and azith) I took it for about 3 months and it finally knocked it out of me. Very clean and careful living kept things at bay. I got strep once or twice afterward, but was able to kill it with regular 10 days of Augmentin. Once we got it out of me, things got better. It was not the whole fix, my son still had to do HD IVig, and we implemented a few other important interventions, but we beat PANDAS back.
  3. Has Dr L not done bloodwork? It would be logical that Strep is present with SC. Long term abx would be important. Augmentin. We did a combo of Augmentin and Azith. Is Dr L prescribing abx? Curious as to why your kiddo is not currently taking something. I'm not on these boards much. My son has been in recovery for a long time. However, he had SC, quite severely. We saw Dr. L and others. You're welcome to contact me. Hang in there!
  4. That's a big NO. I know of several kids who have gone into tailspins when this vax was administered. Some specialists don't do it for this reason.
  5. Thx, that's OK. been with him for years. Got the info I was looking for
  6. Losing my mind with frustration regarding a doc's office in CT! Has anyone spoken to the office mgr over there and if so, can you message me contact info?
  7. My son had a terrifying herx when he started Azith (in addition to Augmentin that he was already on) at age 4. We hung on and stuck with it and after a few weeks things evened out. The combo turned out to be a wonderful part of his treatment in getting him to recovery. Interestingly, a couple of specialists have told me that when a herx is very evident, it often indicate Lyme or another tick born infection. I have never fully accepted the Lyme DX, as my son was classic Strep:PANDAS...but whatever was going on, that herx was the start of his recovery.
  8. Hi Guys: It's been a long time. In my experience, when we don't hear from someone, it's either very good, or very bad. Mine is the former. Through trial and error, peeling many layers and years of riding the roller coaster, DS, now going on 9, is OK. Things started to even out in August 2013 with the final intervention of going GF and learning of a multitude of allergies, followed by weekly shots with low dose serum made by his PANDAS specialist. Of course there were many interventions before this, including HD IVig x 2 and long term abx, steroids, lots of testing, etc. However, we are going on 2 years of doing great. DS has had some very minor, short lived flares when exposed to illness (particularly Strep) but is living a happy, normal life with sports, social fun and great grades. I am stopping in to the forum to offer encouragement to you all. DS's symptoms began at around age 18M, pretty sure he had his first round of Strep at age 14 WEEKS. He was officially dx at age 2.5. There were years of heartache and terror for us as parents. There were years of negligent and neglectful doctors, and there were many nights when I lay awake in tears wondering if he would ever grow into a whole adult. When I look back upon those dark times it seems nothing short of a miracle that we have a healthy, happy, bright boy. I am here to tell you that your kids can get better. Don't give up! Don't lose hope, my friends! Warm thoughts and healing prayers to you all. Kath
  9. I tried a sample with my son and he hated the taste. I didn't think it was that great either. We use Nordic Naturals gummy fish in tangerine for omegas. It is very high quality and tastes pretty good. Re: the multis, i use the marvel superheros gummies or Little critters. As long as they don't have gross due and trash in them, I feel like they are OK....of course my son is so picky that i am thankful that he takes ANY of them!
  10. Dr. Josephine Elia is at Nemours Dupont in Wilmington DE.
  11. Yes. My son had the same facial tics. Started with the eyes and we had the same results with abx at first. Do NOT wait it out and see if time will tell. Make an appointment TODAY with a PANDAS specialist. It will likely take a couple of months to get in. If it turns out to not be a problem, then you can always cancel, but you will have that safety net. The earlier you catch it the more likely you are to arrest it with medication. Once it jumps the track and gets going, the train is much harder to stop. Early intervention is very valuable! You are welcome to message me if you want help with docs. Warm wishes! -Kath
  12. I have heard Enula, avail on Amazon is good. Specialist recommended in conjunction with Mepron but we just D/C'd the Mepron and we are taking a break.
  13. Talked to Dr. B tonight and we agreed that stopping the Mepron is a good idea. plan is to observe carefully and to contact him if DS has more night sweats. Clearly, something is going on with the intermittent night sweats - they are abnormal and drenching when they have been present. But the Mepron is not for us at this point. After a long nap this afternoon, DS was looking a bit better. I think that the Mepron was interfering with his sleep, among other things! I think we need to be grateful for the past year of great health and gently work on the night sweats and very mild and occasional symptoms...when we get back to them alone. I have faith that he will come back from this fast. And thanks, gals, on the Oy Vey comments Ya made a WASP chuckle!
  14. OK, thx. I stopped but it was cold turkey at 1/2 tsp. BID. He is still labile, anxious, irritable, very tired, pale and has separation anxiety where there was none that was not age appropriate. I did not observe night sweats when he was on it for 18 days, although I checked. The physical symptoms I did notice was clammy, damp hands and feet, along with complaints of feeling cold at inappropriate times....kind of like a kid coming down w/something but no fever. I am hoping we will get him back quickly...can I pulse this or is it better in a longer, steady run? I spend about $200 on it and have lots left over. I would be willing to give it a try again during a vacation or after he has established the school year and the teachers know him for his "true" personality. I find that people are much more kind and understanding when they see him having trouble, if they already knew him as a healthy, normal" kid. Oi vay. I really thought we were thru this part of it! Feel like crying. Thanks a million, friends! Warm wishes to you and yours!
  15. PS, DS is 7, almost 8. has anyone had experience with kids this young taking it?
  16. OK, you know we are not new to PANS, but this is what disturbs me. DS has been doing great. The residual tremors (neuro states that they are non-PANDAS related and a genetic concern, which I don't buy) were the only thing that I brought up in the recent doc visit. Doc asked about night sweats and I had to say that yes, although they stopped for 6-8 months, they were back...not every night but when they are, they are profuse. The Mepron was prescribed although there has not been a + Bab test ever...only a 40 (1 pt. over normal range) for Bart thru Igenex in 7/11. Normal Bart 5/12 and 7/13, Stoneybrook and Igenex respectively. In 7/11 some igg Lyme bands but not enough for Ignex to report as +. DS has been on Augemntin and Azithromycin for 3 years, since 7/11. I am really concerned about his response to the Mepron. Where there was a happy child, there is a fearful, anxious, worried, foggy, OCD kid, the likes of which I have not seen in a year. He was on 1/2 tsp. 2 x day for 2 weeks. We started with 1/2 tsp. 1 x day for 3 days prior to going to this full dose. I am really upset over the thought that perhaps we are loading with Mepron when he has nothing to target. I know that Bab is hard to catch and often a clinical dx, but I cannot stand to see see him this way and know that the meds are causing it. I took him off this morning. Have a teleconference w/thedoc tomorrow. Will report back...but has anyone put their kiddo on this med when he/she is doing well?
  17. Hey guys - talk to me about your experiences w/Mepron please. DS7 (almost 8) has been doing very well for a year. He still has very mild flares, but only occasionally. They do not interfere with his life at this point. Compared to the bad old days, he is thriving! He has residual fine motor tremors although the other neuro symptoms have fallen off. He also has extreme night sweats that come and go. Due to this, he has been given Mepron, with suspicion that he has Babesia. Started 2 weeks ago and he is really miserable. Lots of anxiety, mood lability, regression, brain fog, OCD....you know the drill. It is killing me to continue because it is clear that he is suffering as a result of the meds. He awakens doing OK then I can see the changes start about 45 mins after administering his AM dose. I assumed that this was a herx which would justify the meds...but now not so sure. Really shaky on this one - please tell me what your personal experiences have been with this issue. Thx!
  18. It has become kind a kitchy mainstream "funny" comment in our society as many people consider themselves functioning OCD - just a touch of it, so to speak. I hear it all of the time and used to describe myself as "a little OCD" (which I am) when I worked clinically PRIOR to being married, having children, knowing that PANDAS existed. They mean no harm, just ignorant. When I hear it, it grates on my nerves also but I just walk on. There really isn't anything positive that can be said in a "come back". If you have a close relationship with that person, you could explain your situation and enlighten him/her regarding their offense to you....but the risk could cause more strain than help. My vote is to ignore it and use your own inner dialogue, like "what a @#%^ thing to say. He/she doesn't have a clue!"
  19. We tested MTHFR thru the pediatrician, who uses one of the typical labs like Labcorp or Quest. I am interested in the DNA testing for ancestry, but I am always suspicious of giving over that info. Anyone can potentially get it and keep it forever. BTW, I have been to several docs this year, of diff. disciplines and the privacy laws have been decreased, in my opinion. The orthopedic's office basically told me that if I was unwilling to sign a blanket release allowing them to share info with whomever they wanted, they couldn't treat me. This is an office that I have been to for years. The ethnicity and race questionaires are more stringent this year since ACA started - demographic gathering. If you want privacy, you really have to fight for it! PS: I was just at a very well known PANDAS doc w/my son and they asked for his pediatrician's name and address. When I questioned them further, they said that they planned to fax DS's info to her...without my signing a release. I had to tell them no, then ask them to write on their paperwork that I do not give permission. This is a ped that we are ambivalent about, and I certainly do not want DS's info faxed to anyone without specific release and perrmission. Watch out if you feel as I do!
  20. Hi all - DS7 just started Mepron along with his std daily Augmentin and Azith. Doc is concerned about Babesia due to clinical symptoms (cyclical and excessive night sweats and residual hand tremor). DS tested borderline + for Bart and Lyme, igg, 3 yrs ago and 1 yr ago for Lyme only. Both Igenex and again, tests for all were very borderline. No Babesia showed, but that does not mean it isn't there. So far so good with some clinginess and hyperactivity after beginning to titrate Mepron up 5 days ago. Here is a though - since the med was originally meant to manage Pneumonia caused by Pneumocystis Jirovecii Organism, could it also be effective for Myco P? DS ran + for Myco, igg for years and I can pinpoint when it jumped in when he had walking pneumonia in 2010. Thinking out loud, brainstorming...haven't been on the site for quite a while as I had nothing to say. DS is doing very well but we want to try to keep it that way! I hope you and yours are well! TIA, Kath
  21. Marcy, I run Carolina PANDAS Parents Support Group. If you are interested, you are welcome to join if you live in either NC/SC. Link below: https://www.facebook.com/groups/196042083811437/
  22. Hard to get non-GMO soy products. This is a very cheap, highly mass produced genetically modified plant designed to feed the masses. I get my protein elsewhere.
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