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Everything posted by beeskneesmommy

  1. You know, I have not tried it for my son. However, I worry about pathogens like Prions. I have no idea if these types of products sufficinetly filter or if you can get prions from these products...??
  2. I don't know why that is happening! I will try to fix it...
  3. We pay OOP for IVig and get reimbursed 60% for office visits, although I have to file usually. I think it is disgusting that the Ped. did this - he basically just set up a situation that gives your insurance justification to continue to deny under the premise of "Unnecessary treatment". I have unfortunately been there with IVig - was filed incorrectly 2 x and gave Cigna the opp. to deny payment for years to come. I am disgusted with these docs/office staff who are flagrantly irresponsible in this regard. Now, FYI: I think that some of the best OOP money spent has been my phone consults with Bouboulis. Usually they are 15 mins. if I have my notes and ducks in a row. I schedule 6 months in advance, about 4-6 weeks apart. It keeps us connected and gives me an opp. to check in and get help on a regular basis. Cost is 125.00/15 mins. Well worth it. You must go to see him in person to become an established patient 1st, and I try to make the trip about 1 x yr. Otherwise, a lot can be done by phone re: testing and meds. He is in-network with many insurance companies and at this time they file for you, so this may be a good option. We see another doc for IVig that is closer to home. It was this office that recently botched things up for us, but, well, we are still getting what we need. Just a lot poorer for it! Hope that helps, Kath
  4. I am sorry! How terrible! Re: the testing lab, Galaxy: I have spoken with the guy who helped develop this test. He is a vet at NC State but when DS was + for Lyme and Bart he and I talked as he is really one of the leading researchers in the country for Bart. He thinks that Bart is much more serious than the CDC will consider. Here are some links to video, profile and a couple ofhter things. He has a plethora of research to google.. http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=4033 http://www.cvm.ncsu.edu/docs/personnel/breitschwerdt_ed.html http://www.ncagr.gov/oep/oneMedicine/noms/2010/Breitschwerdt_Edward_Bartonellosis_The%20Hidden_Epidemic.pdf
  5. KathyN: My son had a very obvious herx when we stsrted Azithromycin/Augmentin combo 2 years ago. he had classic SC snake-like movements of the head and neck. I have only seen them a few times with him but it is frightening. He also had an extreme increase in OCD symptomology, including walking in patterns (Saving Sammy). That herx lasted for about 2 weeks off and on, after which he continued true recovery with that combo of abx.
  6. I had a suspicion of yeast because infection was cleared for the most part and there were still flares (more minor) after 1 IVig last Sept. We started Diflucan and DS6 became stellar, practically completely asymptomatic for months. Easy blood test showed elevated Candida, which the Diflucan was managing and eradicating well. After use of Diflucan for several months, DS looked great. Due to some very minor flares when exposed to Strep and a minor breathy exhale tic that still emerges occasionally, we decided to do 1 more IVig to attempt to knock the last of the symptoms out. The plan for Clyndo (just 30 days) and Rifampin (just 14 days) simultaneously has been put in place to "blow out any residual Strep". The doc wants to do this in order to get DS set up to start decreasing abx over the summer. He is currently on Augmentin BID and Azith, daily, and has been on this combo or 2 years. The Augemntin will have to come off for the Clyndo/Rifampin combo, and the Azith will stay on board. We may decrease the Azith over time but my hope is that we keep it on at least 1-3 x per week indefinitely until he is 21.
  7. Yes, there are risks. It is a human blood product. It takes about 1000 donors for an IVig treatment. That being said, if you choose a reputable product, the risks are minimal. There are several different types of product. Gamunex is the only one that is approved for neurological disorders, and the only one that I will use. That being said, there are others that docs and hospitals feel are perfectly acceptable options. The risks for IVig products include the possiblity, but not the liklihood, of blood borne pathogens, including prions. However, products like Gamunex filter with PEX and the risk is very low. There is also a risk in administering IVig which includes, but is not limited to Phylaxis. IVig is a big decision and one that we put off for a long time in hopes that DS6 would recover with abx alone. However, we have had incredible success with it. I believe that finding the right combo of abx and clearing the infection(s) prior to moving on to the IVig is what set us up for such success. I believe that unless you are able to identify the infection(s) and clear them first, IVig may not be as effective. I also believe that the success of the IVig is dependent upon the type(s) of infection.There are different opinions from parents as well as specialists regarding whether IVig is a "cure" or not. There is not enough long term data to know if the results are lasting, for those that have had success. Many people find that they return in time for additional infusions. Re: cost, it varies from doc to doc. DS6 is 45 lbs. and the general cost using Gamunex is a little under $5000.00 out of pocket, all said and done including nursing and doctor's fes. This is at the high end of 2g/1k. Most docs infuse at 1.5g/1k. but the cost doesn't seem to change as much. I have seen various docs charge much more than that - do your research and check on the product that each uses. My suggestion would be to put together a team of PANDAS specialists, combining different disciplines. We see Dr. Bouboulis for immunology. He is responsible for taking DS very, very far with testing and abx. We see Dr. Latimer for Neurology and for IVig. Both have been instrumental in our forward momentum. Ultimately, you will be the most effective researcher and make the best decision for your child. Hope that helps. Best, Kath
  8. Well, it was about 5AM post IVig that I wrote that....'safe' may not have been the correct word. I am a big beliver in abx for PANDAS but my son has had some yeast overgrowth as a result of long term abx. I have also seen posts that these meds hav resulted in increased aggitation for some kiddos. Just want some feedback prior to going ahead with it, as his immunologist disagrees with his neurologist regarding the necesity of this particular run of meds. How did your son tolerate the run of Clyndo/Rifampin, and did he take them at the same time?
  9. Hi - DS6 just had IVig a few days ago. He has been doing very well except for flares during exposure. This 2nd IVig was to try to take care of the flares. Otherwise, he has progressed very well since the 1st IVig last Sept. The doc wants to have him take a run of 30 days Clyndo and 14 days Rifampin, together. She wants us to start it now in roder to "blow out any residual Strep that might be left". His titres have been elevated, but not too bad: Anti-DNase 355 and ASO now normal this time, but both or at least 1 are generally elevated to a minor degree at various blood draws every 3 months. Nothing blaring. His other doc, an immunologist, feels that this abx therapy is unnecessary and says that if he had an active infection we would know about it because he wouldn't be doing so much better. DS is currently on a combo of Augmentin and Azith daily, has been for 2 years, and we know he can tolerate abx pretty well. I am just not convinced that these big gun abx are safe - just do not know a lot about them. Any thoughts, advice?
  10. This post made me cry. My DS6 just got thru debilitating headaches from IVig on Mon. and Tues. that made him whimper in a fetal position for hours. In the past, we have experienced upsetting herxing as well. However, you are doing the right thing by your beautiful son and I know you love him with all of your heart. Hang in there and have faith! I'll be rooting for you guys and perhaps you will watch him out on the field sometime - even if for a Thanksgiving family/friend game. Big hugs! -Kath
  11. We are about to embark on a Clyndomycin/Rifampin run. 30 days and 14 days respectively. The pusrpose is to blow out any residual imfection. DS6 has been on Augmentin/Azith daily for 2 years. I also know that Rifampin interacts with the antifungual Diflucan (Flucanizole) and renders the Diflucan inefective.
  12. We have had great success with long term abx to wipe out the infection(s) first, then IVig x 1. We just had another IVig in-home yesterday and the day before. Most people wouldn't have gone for the 2nd one because our son was pretty stellar-looking. However, he still had some minor flares when exposed, so we decided to try to push him completely across the frnce with one more. For us, IVig is a very positive experience and helped to bring our son to 98%. However, I belive that it may not have been successful had we not treated him with 2.5 years of daily abx first. Both IVig treatments were out of pocket, 40 g total over 2 days (son is 45 lbs) and cost a little under 5000.00. Feel free to PM me for more ionfo.
  13. It really bothers me that the CDC is still using data that seems to indicate that Lyme can really only be contracted in the NE states. I don't think that there is any new data to officially support it, but it seems negligent to downplay the possibility of infection in other areas of the country. They are inadvertently instructing the populace to dismiss concerns unless they have been exposed in the NE. I live in the Raleigh area and there are many cases of Lyme here...and growing!
  14. Yes, you can seek dx this far from onset. I suggest that you make an appt. w/a specialist ASAP. She needs testing - the easiest to start with is a blood test for Strep titres (ASO, AntiDNase), Mycoplasma Pneumoniae, and some docs suggest the virus Coxsackie. Along with this a western blot for Lyme can be done. although this test has a high false negative rate. You can pursue specialized testing for Lyme, Bartonella, Babesia and other tick borne infection as well. I would start with the simplest, however that I first listed. What part of the country are you in? Dr. Bouboulis, in CT, is a specialist (Immunologist) that will do more in depth testing. However, if you have a friendly family physician, the Strep/Myco and western blot are easy to order. Here is a link of other specialists: http://pandasnetwork.org/resources/providers/provider-list/ Hope that helps and hang in there! -Kath
  15. Kerry - I have to agree that unless you are looking at plasmapheresis as a treatment possibility, you probably won't get more with Dr. Elia than you are already getting with your current treatment team. I am saddened about the negative experiences here. Ours was a positive one. However, we needed more in the way of abx and our son had just turned 4 when we arrived at CHOP to see Dr. Elia. Because he was not making the progress that desired on only Augmentin or Cefdinir, we added more aggressive specialists. Again, Dr. Elia was there for us in crisis and gave us what we needed to get started, but she IS very conservative.
  16. Clarification: Nemours (Dupont) DOES take insurance. It depends upon what insurance you have. I have Cigna and recently went to see her. The hospital costs were paid but they did not process Dr. Elia's fee. I processed her fee by easily sending it into Cigna and was reimbursed. That is MY type of insurance. You will have to call them to find out how much your insurance covers.
  17. DS6 has been on big abx daily, since Sept. 2010. He slowly moved forward and got much better - but not fully. He still had significant flares. Although he was looking pretty great (about 85%) for many weeks prior, we went ahead with IVig last Sept. The only regret that we have is that we did not do it much sooner. Now, he is in excellent shape - completely 'normal' and functioning at 90-100%. However, he still has had minor flares. Although the flares have become further between as well as milder over the course of 2013, we still have him on Azith/Augmentin daily. We have to get him off of the large quantity of abx. So, with some trepidation, we will be doing a 2nd IVig on Monday. The plan is to boost up his immune system with the IG, then give him a major dose of abx (Clindo/Rifampin) to blow out any residual Strep or other infection. The Augmentin will drop off at the start of the Clindo/Rifampin, which will go for 30 days and 14 days respectively, and the Azith will stay on board throughout. Over the summer we are going to decrease the Azith to a prophylaxis. So, this is another view of an :"exit strategy" for abx. *in addition, if you have not tried Diflucan (Flucanizole) on a longer term basis (30 days) and tested for Candida, you may want to take a look at that idea. This was another game changer for us and once the yeast overgrowth was treated, DS became pretty stellar.
  18. Kerry, that depends upon your child's circumstances. As I mentioned before, if your kiddo is demonstrating severe symptomology and you are looking for plasmapheresis, Dr. Elia is the one to see. If you are looking for someone to supplement the treatment team that you have already put together, I would say that you already have your bases covered. I have a strong relationship with Dr. B and Dr. L as well. They all know that each other are on board. Dr. B does testing, immunology, and most meds. Dr. L provides IVig and although Dr. Elia was the first specialist to confirm the diagnosis, and used to be our med provider, she now is in the role of my checks and balances doc. As I mentioned, she is conservative. I almost always bounce big treatment issues off of her prior to implementing them, as she is my conservative voice. It is hard to give you much more when I do not know what you situation is.
  19. Dr. Elia is definitely PANDAS friendly and I believe that she heads up the BX psych over there. She has been on this journey with us for several years. She is an expert in using Plasmapheresis for PANDAS, and has used IVig as well. That being said, she is very conservative and does not use these treatments liberally. She is known for treating some of the most difficult cases. She is a part of our treatment team which also includes Latimer and Bouboulis. I value her opinion greatly and she is always part of my "checks and balances" when I make a big treatment decision. If you are looking for an initial diagnosis or if you are further along and looking for Plasmapheresis, she would be your go-to gal. I fully trust her. However, although she is a great place to start, if you are looking for bigger gun abx like Azithromycin on a continuous basis, or multiple IVig's, then you may want to see someone else as well. In a perfect world, I would start with her and add on others if necessary as we did. We started with her in crisis and she helped with long term Cefdinir and Augmentin. I felt that we needed to get more aggressive and we went on to see Bouboulis, who did necessary testing and was instrumental in moving our son forward with an aggressive approach of Azith/Augmentin combo. How effective Dr. Elia's treament approach is, depends upon where you are in the PANDAS journey, how old and frankly, how ill your kiddo is. In addition, I have had some negative feedback from a couple of people who recently saw her. I remain loyal to her due to her willingness to intervene and help and when my son was in the midst of his first acute episode and we were a family in crisis.
  20. So sorry! Like you need this too?? This happened to me years ago when I cold turkeyed off of birth control. Happened again a few months after I stopped breast feeding my son. Recently, it has been happening again...I have started to have less regular periods over the last year and I just turned 49...I know, TNI, lol! However, I belive that it is hoemonal, at least for me. Severe stress causes hormonal imbalance as well...really I take prenatals to make sure I get lots of iron and vites. This helps. I use one with the DHA and calcium as well - called "Citrinatal". It is a script.
  21. DS is 6.5. DX at age 2.5. Started treatment for PANDAS (not just the 10 day run for the Strep) at his acute episode post T&A just after he turned 4. We did abx treatment for 2 full years, the bulk of which was Azith and Augmentin daily, therapeutic doses. He moved forward well on this journey, but was not 100%. He also still flared when exposed. We finally decided to do IVig last Sept, when he had just turned 6. The only regret that I have is that we did not do it a year earlier. It was a bumpy ride, but day by day many symptoms fell away. We live a much easier life now, with many, many weeks at a time at 100%. He is still flaring occasionally at a much more minor level. None of his teachers nor family friends can see it. We see it, however, although again, to a much lesser degree than before. For this reason, we have decided to do IVig again, to try to push him all of the way across the finish line. I would highly recommend investigating the possibility with a specialist. IVig tends to be more effective for the little ones. We are choosing to do it now for this, as well as several other reasons.
  22. I have been concerned with it as well. We have not tried it, but I do not discount the possibility of possible problems just because it is an alternative med. I have been told to try Magnesium and Inisotol. The combo blew my son sky high within 24 hours. I am pretty sure it was the Inisotol, but I stopped both right away. It took him several days for the symptoms to decrease. He was much better off without it. I am interested in Enhansa specifically because I have observed several times that Diflucan is an amazing med for him. Since I know that we cannot keep him on Diflucan indefinitely, I am looking for some alternative med that may have the same anti-inflammatory mechanism. I was hoping that Enhansa might be the one, but knowing how sensitive my son's system is, I hesitate to go there. The only way we can really know is to try it conservatively and see what happens. Ugh.
  23. I often describe myself and the other PANDAS moms that I communicate with, as having PTSD. To watch your child fall apart while battling for his/her life, simultaneously being somewhat abused at the very least by omission of understaning and belief from the the medical community, family and friends, is most certainly traumatic! I remember times when I simply felt like I might go off into a frightening place in my mind and perhaps not return. I am so very sorry that you are not gaining as much ground with your kiddo, and that you are having medical issues in addition to what sounds like current trauma. It does however, seem as if a major medical work up might be in order for you. In addiiton, do you have someone that would be willing to give you some reprieve...a little rest during this time?
  24. Yes, I am firm beliver in this abx combo in our case. Azith would be the treatment of choice for Lyme/Myco for a child this age, and Augmentin for Strep. He showed very significant improvement over a long period of time (2 steps forward 1 step back) to the point at which I really questioned whether we should do the IVig last Sept. Of course, that helped as well and the addition of Diflucan rendered him just like any other boy for a good long stint. However, because of the minor flares betw. Diflucan and the Strep titres still up and down (and mine as well - we feed Strep off of each other), we are doing another IVig in 11 days. Hoping to keep pushing him forward in this excellent progress...perhaps over the finish line. We have the added control in that he is an only child, so identifying and controlling exposure to illness in the home is a little easier. The progress, overall, has been amazing, but the Diflucan...well, it just takes that final edge off every time he is on it. Too many factors to observe with good protocol, as he IS a little high on the Candida, and he WAS exposed to another boy who was coughing over the weekend, just prior to this current flare...so the ability to pinpoint it is skewed. I will be talking to Dr. B on the 16th and will bring it up again. http://www.neuroborreliose.net/downloads/a_new_approach_to_chronic_lyme_disease.pdf
  25. This is so interesting! DS6 was classic Strep:PANDAS, dx at age 2.5. That was 4 years ago. 2 years ago he did come up with a few bands, igg and igm for Lyme and igg for borderline bart. + results were believed to be true, but they were both pretty borderline, apparently. He was started by Dr. B on Azith and Augmentin 7/11 and remains on the combo today. I had never been totally "sold" on the Lyme/Bart and thought perhaps it was a false +. Recently, when I described the herx that he went thru for 2 weeks after starting the combo, Dr. L seemed to think that the Lyme dx had been valid. He was tested again in May 2012 and both were neg. Both of the tests were not western blot, but the good, long term cultures. DS continued to improve and has not been in a really bad flare since he was exposed to another boy for several days who had active Strep and Myco last August. He has had flares since then, but not the ones that put the family in crisis. I am sure the IVig helped a lot as well. I can access more Diflucan and I will. However, it is good to have hope that if it is acting as a diff. mechanism than solely antifungal/antiflammatory, then it may actually be killing off the Spirochete by arresting the reproductive cycle?? @LLM, thank you - I tried DS on Inisotol some time back and he flared terribly. Stopped it quickly. Inisotol is believed to effect serotonin, so I want to be careful with anything like that. I will likely try the Enhansa if it is needed over the summer some time, so as not to muddy the waters. We have been sunny at 75 for quite a while on the Diflucan, but I want to get to the meat of it, not just put a band aid on it. It is clear that when off of it, there is a dip. Unfortunately, Diflucan looses effectivenes if used over long periods of time, so I want to try to find other avenues... Thanks all!
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