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Everything posted by beeskneesmommy

  1. IVig 5/20, 5/21. Hard decision because DS6 was looking very well at the time. Convinced to go ahead because he was still having intermittent MINOR symptoms and the plan was to boost the immune system prior to getting him off high abx over the summer. He has been on Azith and Augmentin daily for 2 years and was doing better than ever before with the continued meds and a previous IVig last Sept. So, after the IVig, he was holding his own, although not great, but no cause for alarm as he does respond with flare post IVig. 30 days ago as per doc's orders, I stopped the Augmentin and put on board 14 days of Rifampin and 30 days of Clindomycin, daily. I also continued the Azith, daily. During the time that the Rifampin was on board, he leveled out and lookd great! After the Rifampin went off, and he has been on just the Azith and Clindo for the last 2 weeks, he has gone down hill. Primary symptoms are pretty severe OCD (causing irritation, arguments, mild tantrums several times/day) and the return of tics. Today is the last day of Clindo and I am dutifully finishing it out. I have Augmentin and can start it again if I choose, but I am wondering if I should just chill and hold my breath and see what he looks like over the next week. I fear him going down hill further, but there is a part of me that blames the Clindo for it (crazy??). I started him on Diflucan 1 week ago because I was concerned about yeast. This has historically made him look stellar with the combo of Azith and Augmentin after a short herx, however, does not seem to be touching him now. I suppose he could be having a major herx from the Diflucan, but my gut tells me there is more to it. So questions: 1. anyone seen negative response from Clindomycin? 2. chill and see if he gets worse or starts to get better when it is finished at the end of today, while keeping the Azith and Diflucan on board? 3. replace the Clindo immediately with Augmenin, abandoning the plan to try to taper him off of most abx at this point (he would indef. stay on the Azith, alone). We have been at this for 4 years and I would appreciate a seasoned member's input, please! Warm wishes for the recovery of your own, Kath
  2. We are just finishing the combo with our 6 year old. We had 14 days Rifampin (1 x D) and 30 days Clindo (3 x D). The Rifampin has been completed and the Clindo has another 5 days to go. After a couple of days of the combo, DS did very well - almost completely asymptomatic. When the Rifampin droppped off and it was only Clindo, he had some more difficulty and some symptoms returned. I need to add that throughout, he has also had 1 dose of Azith. This combo is tough on the stomach, but we are used to that. I would give the Clindo and Rifampin, right after one another in the AM, then the Clindo in the early afternoon, then the Azith 1 hour later, and then 2 hours later probiotic, then clindo at bed time. Got to keep aneye on the clock and look sharp! I missed the probiotic on more than 1 occasion
  3. Mass General is the only one that I have heard is PANDAS/PANS friendly. Even then, if you do not get Gellar and/or people who have work with him re: PANDAS, it may be the luck of the draw. His info link is below. It also helps to have a clinical dx from one of the primary PANDAS docs and be able to say "He is currently being treated for PANDAS/PANS by -----". http://www.massgeneral.org/psychiatry/doctors/doctor.aspx?id=18068
  4. Coltonsmom, there is an immunologist in Charlotte who can see you quickly. I am going to PM you.
  5. I gave my son Inisoltol starting at low dose and he became so exacerbated with magnified PANDAS symptoms within 2 days that I stopped it on the 3rd. I had been given the idea by an MD. I did not realize at the start that it acted like an SSRI. If I had, I would have been much mroe hesitant as SSRIs can have adverse effect upon PANDAS kiddos.
  6. When was the onset of symptoms? Many of us travel to see specialists. I am so sorry that you had this terrible experience. Did he provide any diagnosis? Here is a list of PANDAS docs: http://pandasnetwork.org/resources/providers/provider-list/ This site can also give you more information. I am originally from the suburbs of Philly, but live in NC now. I travel to see Dr. Bouboulis in CT, Dr. Latimer in MD and Dr. Elia in DE. I suggest that you get an appt. set with someone ASAP because the wait can be a couple of months. In the mean time, can you get a doctor to prescribe Augmentin?
  7. We don't feel the need to do it but we have been at this for several years and have several docs on board with us. Plus there is an obvious cause-effect with Strep in our kiddo. I think it is a personal choice. However, I would caution you to be careful in sharing it with non-PANDAS docs. I believe that it is meant as a tool for clinical diagnosis. If it comes out negative, that does not necessarily fully rule out PANDAS/PANS. I fear that some medical professionals will misinterpret it as "proof" that some kiddos do NOT have PANDAS/PANS if it is neg., and those kids may fall thru the cracks.
  8. What a patriarchal jack ! That is disgusting. Find a new doc and dump this guy! It is up to you whether you want to alow vax for your child. Most states allow exeptions for school "for religious reasons". That will cover you if you choose not to vax. We do not vax, although I would like to when my son gets much older, like 16+. I absolutely KNOW that one of his 1st PANS responses was at his 14 month boosters - who knows what damage occurred at his newborn vaxes. I believe in the "herd" theory - if most of the other kids are vaxed, mine will likely not get exposed and will be OK. I have to believe that because there is no way in H--- that my son is having anything put into his body at this time. Do you see a specialist? If not, can you get hooked up ASAP so that you have access to antibiotics? I got the feeling from you post that perhaps your son isn't currently being treated because of this doc's "not up for discussion" attutude....
  9. Dr. Mauve O'Connor has started a PANDAS Clnic in Charlotte. Here is the FB link: https://www.facebook.com/OConnorAllergy?fref=ts If you are not already a member, I run the support group for the Carolinas. Here is that link: https://www.facebook.com/groups/196042083811437/
  10. I hope you kept it. Here's what I would do and what I have done for myself in the past. Put it in a plastic bag or tape it to an index card and put it in a plastic bag. Double bag the little sucker. Save it. Go to an urgent care and /or call the family doc and ask for a run of Doxycycline to prevent Lyme. A 12 year old should be OK with it Doxy - I believe that kiddos under 8 can't have it. Docs may tell you that the tick must feed for 24 hours in order to transfer Lyme. May be true for people who do not have autoimmune issues, but I wouldn't take the chance. Bring the tick into the urgent care or doc's office and ask that they send it infectious disease (or the powers that be) for identification. Deer ticks are small and brown. They do not have a white spot on them. Be prepared for resistance but power on and make it happen. Better safe than sorry! I am not a medical professional, and I am not giving you medical advice. Just telling you what I would do
  11. We just started Rifampin this morning, along w/ Clindomycin. The plan is to do Rifampin for 14 days and the Clindo for 30 days "to blow out anything residual that might be in there", according to the doc. DS6 has been on Augmentin and Azith, daily, for 2 years, with good results. I discontinued the Augmentin for this 30 day run but I am keeping the Azith on board. This means 5 doses of abx daily...where will I fit in the probiotic!!?? Anyway, we just had a 2nd IVig on the 20th and 21st in order to try to get rid of the more mild symptoms that persisted...hoping this does the trick because we are in the backslide stage of the IVig right now and it hurts to see after 8 months of doing very well. I wish good things for you - I guess we are in the same boat with the waiting game re: the abx! Re: Herx, 2 years ago when DS started the combo of Augmentin and Azith (had already been on Augmentin but added the Azith 7/2011), he had a major up/down herx for 2 weeks. he had come up w/borderline igg and igm Lyme and borderline igg Bart. The herx seemed to indicate that the Lyme was likely a true positive. It was a toughie - hard to get thru, but tsymptoms started to decrease after a couple of weeks and he has become progressively much better over time.
  12. Um Yikes!We have not done this but wow - did not know that a doc doesn't order and HIPPA laws do not apply. Good for you for questioning this and bringing it to people's attention! This sounds like it is potentially a major concern!
  13. For many there is a genetic presdiposition for Strep/SF/RF. Part of our clinical dx was based upon my family history, which is riddled with RF and Strep related illness on both my mother and father's sides.
  14. I am deeply concerned about the Bipolar dx for a 3 year old. What testing has been done? Has he received all pertinent tests for PANDAS/PANS only excluding the Myco and genetic testing? Myco is a pretty big one - I would get him in to the lab asap for it if you can. Has he been tested for tick borne infection? Is the neurologist a PANDAS specialist? My son was dx at age 2.5 and at no time would I have ever considered a Bipolar dx, although I could see why some of the symptoms might have caused a less experienced eye to try to do so. If you are not seeing one of the 'big gun' PANDAS speciailsts, I suggest you get an appt. and do the traveling if necessary. It sounds like your child's future may depend upon it. He needs further testing for infection and if that stone leaves nothing unturned, then further genetic testing. I suggest that you add an immunologist/PANDAS specialist to the treatment team.
  15. My son has been on Augmentin/Azith combo for 2 years. He is 6 so does not take the XR. This has been an excellent combo designed to target both Strep and Myco, but there was also borderline Lyme and Bart. All infection has been eradicated and got progressively better throughout the treatment. Prior to this, he was on Augmentin alone as well as Cefdinir alone. Neither did what the Augmentin/Azith combo has done. He did have a herx for a couple of weeks that was pretty significant when we first added in the Azith. This leads us to believe that the Lyme was likely a true positive.
  16. Each kiddo is different. Try to be patient and give it a little more time. DS6 held his own for the first 2 weeks post IVig. At the end of the 2nd week, we saw a major dip with severe OCD and some other symptoms. This lasted for another couple of weeks, then things gradually atrted to get better. It was not until the 8 week mark that I realized that so many little symptoms had fallen off and that he was really progressing forward well. He continued to do so for the next 8 months, which were wonderful. However, he still would flare when exposed to infection, although the flares because more short lived and less extreme over time...thus the 2nd IVig that we just did a little less than 2 weeks ago on Mon/Tues, 5/20 and 5/21 - to try to get rid of the flares alltogether. Sure enough, it is the end of the 2nd week and bang: here comes the OCD like wildfire. Hang in there - every kiddo manages it differently. It must be very tough on the body and brain to have thso inappropriately behaving antibodies flooded with "good" antibodies..much like an infection.
  17. Yes, take out the tonsils and the adenoids. Strep can adhere toadenoids. No surefire that the kids won't get Strep throat without, but it sure reduces the risk.
  18. Whether or not the 'Cunningham' test is approved does not hinge upon IVig being covered. IVig is still considered and listed as experimental for the treatment of PANDAS. My hope, however, is that the current ongoing trials at NIMH will eventually provide us with what we need...but it may still take several years.
  19. http://www.childmind.org/en/press/brainstorm/pandas-ocd-and-bomb-plot
  20. I know. I find myself feeling angry and defensive. Multiple people in our life are aware of my little boy's diagnosis, and I resent being put in a position in which, inevitably, people who may not be good friends and are perhaps inclined to gossip, might chose to view DS6. I feel that there were several people and entities that were irresponsible with their words and that there is potential for great damage to the PANDAS community. However, here is an article that is well done and seems to outline some of our concerns: http://www.childmind.org/en/press/brainstorm/pandas-ocd-and-bomb-plot Thank God for the rational minds of this world!
  21. With all due respect, I would prefer not to link some of these people to PANDAS. Given my disgust over the way the media, the mother, and others flagrantly identified PANDAS as the primary factor in the Oregon boy's deviance, I would not call so much attention to it at this time. I prefer to move on and continue to call attention to the disorder in other ways that will elicit a more appropriate, thoughtful response from the media and therefor from the community.
  22. I have been increasingly disturbed at the tone of some of the news pieces covered regarding PANDAS over the past several months. Clearly, this is an extreme situation. However, several other articles that I have seen posted accentuate the symptom of aggression and desire to harm others. I am well aware that this is part of the symptomology. However, I would hate to think that those people in the non-PANDAS community get the impression that having PANDAS renders our kids dangerous. I think this is something to watch carefully and make sure that we educate others with clear and balanced understanding of our children.
  23. If you scroll down, you will see another IVig topic recently posted. You may get some info from it as well.
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