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Everything posted by Alex

  1. Sorry to hear about the strep. My only thought is to be agressive in treating the strep. Is 300 mg Cefdinir a prophylactic dose or a treatment dose? If she is culturing postive then I'd want to make sure we were treating it as an active strep infection. With all these kids have been through, and all the antibioitcs they have been on, I'd think now is not the time to be conservative, especially since things have been going well and moving in the right direction. Good luck, Alex
  2. Charlotte Mom, We also had the supposed penicillin allergy at age two after some hives while taking it and avoided it for eight years until an allergy test showed no penicillin alergy. He has been on penicllin since December with no allergic reaction. Looking back we are fairly certain that my son had some milder PANDAS symptoms as a toddler that certainly could have started from an undertreated strep infection. How is your daughter doing on the bicillin? Seeing any positive changes? Alex
  3. Interesting. After a few great weeks following PEX this summer, my son's PANDAS symptoms returned, coinciding exactly with a bad tooth infection and susuquent extraction Also, he has a history of cavities in his baby teeth that seemed excessive considering we took pretty good care of his teeth. Alex
  4. Hi Melanie, Did your doctor swab your son's thoat to see if it was a strep infection? Also, just to put it out there again, Dr. K is adamant that 1g/kg is not only ineffective but possibly harmful for PANDAS kids. I certainly don't want to seem like I'm insisting you contact him, but he is the guy who has treated 500 PANDAS patients, and it really might be worth an e-mail exhange to get his thoughts. He had a long covnersation with our pediatrician to explain his protocol so I know he would be happy to speak to your doctor. I have yet to read of anybody on here who was having success with the monthly 1g/kg dose, but when I spoke to Dr.K a few weeks ago, he had been inundated with calls from people whose children were getting the dose that your son is getting who were not seeing postive results. I can guarantee that he will say that the dose your immunologist is giving your son is too low. Also, after getting the higher dose, 1.5 g/kg or 2g/kg, there may be no need for further treatment, but if there is further IVIG, it won't be for 2 to 3 months. So the insurance company pays the same or possibly much less in the long run. That might be the argument you need to get them to go along with it. Good luck, Alex
  5. I agree with everyone else. Dr. B is great. Your son will be in good hands with him. To send a PM, private message, click on anyone's forum name and one of the choices will be Send Message, or click on the messages link near the top right and find Compose New Message. Please don't hesitiate to send your questions. Good luck and keep us posted. Alex
  6. Wornoutmom, I'll second the previous posts, don't rule out PANDAS just yet. In fact, from looking over your old posts, it sounds like Dr. K had no doubt it was PANDAS. He recommended your son have IVIG as soon as possible. As much as I respect Dr. Latimer, she prescribed PEX for my son, I have to say that I feel that I would listen to Dr. K above all others at this point. He has treated the most patients, and he has a fantastic track record. I'd at least say make sure Dr. K has the full story, and if he still believes it is PANDAS then you have to weigh the risk of IVIG vs. the potential benefit. And the risk is proven to be extremely low with the benefit being a potential cure. Alex
  7. I think it is pretty much standard for a headache after IVIG. We gave my son Ibuprofen and lots of fluids and he felt much better by the second day after IVIG.
  8. I would add reg. amoxicillin onto the reg. Augmentin...so the ratio of amoxcillin/clav. acid approximates the XR. It won't be time release amoxicillin, but hopefully it will be close enough to XR. Also, I would appeal your insurance company's denial...based on the lack of qualified docs in your area (wherever that may be!). We got our out-of-network psychiatrist covered since the insurance co. couldn't provide us with a QUALIFIED in-network doc (nobody wanted to touch a 7-year-old with full-blown anorexia nervosa with a 10 foot pole!). There is the new time release amoxicillin Moxatag. Two of those spaced at 12 hours plus two 250mg regular augmentin also at twelve hours would give you 2000mg amox per day, same as two Augmentin XR, 250 mg of clav acid, which Dr. K feels is important, and a very very good time release profile. Alex
  9. Hi Hes all done for today it took about 4 hours and no problems to report I have BCBS of NJ he is having privigen 10% Liquid 60 grams=600ml to be infused 3-4 hrs once every 3 weeksvia vista pump Dx is selective Ig deficiency cronic condition is PANDAS Melanie, How much does Danny weigh? He is 5'9 and weighs 140-145 Hes 15 1/2 yrs old Melanie, I am so happy for you and your son and family to finally be getting treatment. It might be worth an e-mail to Dr. K to discuss dosing levels. He is very particular and since he has had more success than anyone there might be some value in his approach. Good luck, Alex
  10. Hi Hes all done for today it took about 4 hours and no problems to report I have BCBS of NJ he is having privigen 10% Liquid 60 grams=600ml to be infused 3-4 hrs once every 3 weeksvia vista pump Dx is selective Ig deficiency cronic condition is PANDAS Melanie, How much does Danny weigh?
  11. Melanie, What dose of IVIG is Danny having? Alex My husband is home with him I have the orders at home Ill tell you later I know it takes about 4 hours Melanie Melanie, I am only asking because of I phone consult I had with Dr. K the other day. He is adamant that the dosage should be 1.5 g/kg or higher. Otherwise, according to Dr. K it probably won't do what it is supposed to. Alex
  12. Melanie, What dose of IVIG is Danny having? Alex
  13. Hi My son had PEX last August. He saw great results for a few weeks and then had pretty much a complete regression, so your question is near and dear to my heart. If I had it to do over again, these are the things I would do. I'm not sure that all of these are necessary or beneficial, but since we don't exactly know why he regressed, if I could go back in time I would make sure to cover all my bases. 1. Full strength antibiotics leading up to, during and after the PEX for an extended period of time. A year? Until puberty? Adulthood? Don't really know. 2. Get teeth checked prior to PEX to make sure no cavities or infections, and to avoid needing a cleaning for 6 months or so after PEX. My son had a tooth infection that was discovered a few weeks after PEX and conincided exactly with his backslide. I've gotten differnt opinions on whether or not it was a contributor, but personally I am convinced it played a role. 3. No vaccinations for an exteneded periord of time after PEX 4. If at all possible, follow up PEX with IVIG. We did a phone counsult with Dr. Kavocevic out of Web Pediatrics the other day, and although I'm convinced that even he states some of his opinions as fact, he was adamant that without IVIG, no cure for PANDAS. Also, and I hate to say this, he does not believe that PEX is the correct procedure for OCD predominant cases. He says for TIC predominance it is good, but only if followed by IVIG. The thing I will say is that from our own experience, and others I have seen on the board, even for the OCD kids you get a quick resolution of symptoms via PEX. Just make sure you do everything you can to keep the benefits. In hindsight would I do PEX over again? Tough, tough question. To be honest, I think I would becasue of the quick dissappearence of symptoms (still took a week or so for us) but I would do the above items as well. Also, it might be worth a few e-mail exchanges with Dr. K even though I have no doubt he will say PEX is the wrong move, you could at least get his perspective on when and how to do IVIG. I hate to add stress here or cloud your decision but I wanted to give you an honest answer. I posted a description last August or early Septemeber about our experience in the hospital. You can use the My Assistant search to look for it, or just scroll thorugh old posts from that time frame if you'd like to read our description. Good luck and please PM me if you want to ask any questions. Alex
  14. We are working with Dr. Trifiletti. Before we saw him dd was already on 2000mg Augmentin XR. He added 500mg Zith. Now my insurance will not cover Augmentin XR as of the new year so I'm looking into alternatives. I did write to Dr. T asking about substituting the Augmentin with Moxatag and he wrote back and said that Moxatg would not replace the Augmentin XR becasue the Clavulanic is critical to provide inhibition of beta-lactamase. (over my head) He added that Augmentin is an "extended spectrum" penicillin as well as extended release. (more extended spectrum than Moxatag, I presume, which is just amoxicillin made to release slowly) But then he also said that perhaps for the present time, Amoxicillin (in the form of Moxatag) may be enough for my dd. (along with the Zith, I presume) I've written back to ask which he'd prefer for her at this time, Moxatag or regular Augmentin. I'll let you know when I know. THis is so difficult to sort out. I am so in over my head. Angela Angela, If you decide to do the 2 MOXATAG per day, you could also do 2X250/125mg augmentin per day. That way you would be getting the same total amount of amox as two XR, 2000mg, and still get the clav acid. In fact, you'd be getting the 250 mg of clav acid per day that Dr. K thinks is so important. What's more is you would be getting a better extended release profile from the MOXATAG then you do from the Augmentin XR. Alex
  15. Hi, You know, I think Dr. K would say, and does say, that PANDAS kids need IVIG. The first time we consulted with him back in June I remember him telling me that in his years of treating PANDAS he has had only one child cured from antibiotics alone and that the child was in a true first onset and was treated very soon after the onset. I think that Dr. K would say that the child is cured when there are no longer any symptoms, and no flares associated with illness. I don't want to put words in the man's mouth, but that is the way I understand it. I think in his opinion, Sammy is not cured because for one, if he gets strep, even to this day, he has a return of symptoms. To Dr. K that means that the underlying autoimmune condtion is still there. Also, in the phone conversation today, he basically said that he thinks Sammy still has symptoms, and just deals with them or hides them. I think Beth Maloney would take exception with that. As for IVIG being a cure, and I see Faith posted that she has some questions, I think this forum is very deceiving in that what we see on here are the people whose children are having problems. So if someone's child has IVIG and still has issues, they keep posting. If they have IVIG and get better, they get on with their lives. Dr. K told me he has treated 500 or so PANDAS kids, and he treats with IVIG, and he says it is a cure. Either the man is crazy, or for the most part that is true. WorriedDad's child is obviously an exception, but from what I understand in speaking with Diana Pohlman of the fabulous PANDASnetwork website, his child's is a true exception that Dr. K says is his toughest case ever. Also, in speaking with Diana, she says that the healing process after IVIG is extended. The kids continue to have occasional flares for a year or two after IVIG, but they get less and less severe and then finally, nothing. For those that think IVIG is invasive, I have to say that it is really no big deal. My son had one infusion through Dr. B and we almost had fun. He felt crummy the next day and then was back up to speed physically. PANDAS wise not so good yet, and Dr. K says it won't get good because we didn't do a high enough dose. At this point I think we are going to choose to believe the man. Going to call Dr. B tomorrow to discuss. As far as IVIG being dangerous, there has never been one blood borne infection passed through IVIG in the U.S. Those are fantastic odds. Certainly the most dangerous part of my son's IVIG was the 600 miles of driving in one day with his sleep deprived dad. I have been one of the ones on here pushing for Augmentin XR becasue of the Sammy story, and I still think there is something to it, especially with WorriedDad's example to add to it. With that said, I can't think of a reason not to go for a full cure. Alex
  16. Angela, Talking to Dr. K I briefly got his theory of why IVIG. He says it is necessary to halt the autoimmune process that is causing PANDAS. He does 1.5 g/kg because it is enough donor antibodies to shut down the bodies antibody production for several weeks. When the bone marrow starts making antibodies again, it has been rebooted and doesn't make the bad ones anymore. So there doesn't need to be an immune deficiency to make it necessary. I listened to Dr. K's interview on the Autism 1 program. The link is on the forum here somewhere, I'll repost it later. In it he talks about how the initiial strep infection could have been years ago, long enough for titers to go back to normal. Then, the autoimmune process is kicked in to high gear by something else, flu or whatever(Also, from Buster's posts, ASO doesn't always rise even with a recent infection) The radio program was very informative if you get a chance to listen. I'd like to get Dr. T's opinion as well since I think he believes you can cure PANDAS with antibioitcs and believes he has done it. Ugh! I wish there was some clear cut answer. I'll post my notes from the phone consult with Dr. T in a separate thread later. Alex
  17. Hi Angela, So sorry you are having problems with the insurance company and so frustrating. Not to cloud the issue further, but I just got off the phone with Dr. K and along with saying that there is no PANDAS cure without IVIG, he said that he believes highly in regular Augmentin over XR exactly because of the Clavulinic acid. He is in the process of investigating if the clav acid is antiinflammatory. He also talked about beta-lactamase needing to be inhibited, even if it is not coming from the strep. We went back and forth on whether or not Sammy from 'Saving Sammy' is cured or not. He seems to think that Sammy actually still has PANDAS symptoms and that he just hides them or has learned to deal with them. On this one I am going to have to go with Beth Maloney and with her son, who was debilitated with OCD and TICS, and went on to excel in high school and is seemingly a well adjusted, happy, successful college student. And for Sammy, XR was the magic bullet. So who knows. With that said, I think the MOXATAG is worth a try and good luck getting it. I think there is some sort of voucher you can get to keep the cost down. If not, according to Dr. K. at least, regular Augmentin is a good choice. But, he would certainly say don't expect a cure from it. Also, from Dr. K and Diana Pohlman and LLM who posts on here, theses PANDAS docs are finally getting together to work out a standard treatment, and according to Dr K it is going to be his protocol that is adopted. He told me he has treated 500 PANDAS patients at this point. PM me if you want to talk. Alex
  18. I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies. I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist. To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox. This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/ Alex
  19. It's vaccination against Streptococcus pneumoniae which causes pneumonia, ear infecdtions and other types of infections. I'm not sure when it became standard practice to vaccinate against it, somewhere around 2000 I think. Not sure if kids older than 10 would have gotten it. Alex
  20. Hi Angela, hope things are going well for your daughter. My wife just sent you an e-mail to check in on you. The pneumococcal titers are the antibodies that supposedly should be present in people vaccinated with the pneumonia vaccine. Failing the titers may or may not be an indicator of an immunological problem showing an inability to mount the correct antibody defense against infections. There was a long thread on this topic going back and forth here a few days ago and apparently there is not a consensus. It sure seems though that a high percentage of PANDAS kids fail these titers. Main point for us though was that it was part of the justification for IVIG to the insurance company. Alex
  21. Ellen, Dr. B just gave Eli a standard allergy skin test for penicillin. It was a couple of pin pricks in the upper arm and then waiting twenty minutes or so to look for a reaction. No reaction so Dr. B wrote the prescription. We had an epinephrine pen on hand when we gave him the first dose just in case, but Dr. B really had no concerns of any sort of significant reaction after the skin test came up negative. Alex
  22. I agree. I was just responding to your post, the title of which is 'Don't "Split" Augmentin XR'. The manufacurer says it is o.k. to split it. So it is not fact that you can't split it even though your pharamacist says otherwise. I absolutely don't want to sound snooty but I also don't want parents who are using this medicine or considering it to stop because of some possibly false information. My guess is that if you showed your pharmacist the guidelines for using the medicine written by the people that designed, patented and produce it that he or she would say 'Oh, I guess I was wrong'. If not I would ask for the source of their information, which for all I know they have. Alex
  23. Hi all, My son had his first of what will be monthly IVIG treatments through Dr. Bouboulis, an immunologist out of Connecticut, yesterday. Quick back story, my son develped full blown PANDAS after an untreated Strep infection last April. Looking back we realize he had some less severe episodes prior to this most recent. After several different antibioitcs and a month of Prednisone, all of which were somewhat but not completely successful, we opted for Plasma Exchange through Dr. Latimer this last August. It took about a week after the PEX to see big changes but for a few weeks we had our son back and it was great. Then things started to go down hill with all his PANDAS symptoms returing over the course of a couple of weeks. Turns out he had an infected tooth during the time the symptoms returned and we have suspected that it may have been the cause. Also, his ASO titers, which were close to zero after the PEX, climbed back in to the 200's, indicating, I guess, that he is still harboring strep somewhere in his sytem. So, not really sure if the tooth or strep, or both was the cause of the PANDAS coming back. We saw Dr. Bouboulis for the first time in late Novemeber. He ordered a host of blood tests for my son which included Igg levels, pneumococcal titers, ASO, anti-dnase B, lyme disease, calcium, vitamin d, and some other stuff. He also tested my son for penecillin allergy, which my son supposedly had since some hives while on penicllin as a two year old. The test came up negative and Dr. B. prescribed Augmenitin at 2X875mg per day. We saw some improvement on the Augmentin, but nothing dramatic, over the course of Decemeber. We saw Dr. Bouboulis a second time this last Wednesday. We discussed the results of all the testing which found that Eli had low normal total IgG with low IgA and failed most of the pneumococcal titers. Dr. B's opinion was that because Eli did not have dramatic improvement on the Augmentin and that we had already done antibiotics, prednisone and PEX that monthly IVIG was the next step, but that it might be difficult to get approved through the insurance company, since there were no major immunological deficits. I have government insurance through the Navy Reserves and they have not questioned any of medical decisions made by Eli's doctors throughout this PANDAS journey, and this again proved to be the case. We were approved for IVIG. Also during the Wednesday appt. I requested that we switch the antibiotic to Augmentin XR and Dr. B was all for it and wrote the prescription. Compared to Plasma Exchange, the IVIG was a non-event. The infusions are done at Dr. B's office. We had a room to ourselves. The nurse that does the infusions is great. She put the IV in Eli's hand quickly and painlessly and started the infusion before I even realized it. The dose was 1 gram per KG of body weight of Gammagaurd IVIG. The treatment took 5 hours but went off without a hitch. The nurse pretreated Eli with tylenol and benadryl. During the treatment he was comfortable and watched a movie on a portable dvd player they have, played cards with me and read a book. On the way out to the car when leaving the doctor's office he said he was sleepy and then slept for three hours during the drive home. He was in a decent mood when we got home and ate and drank normally. He woke up this morning with a headache and not much appetite. He layed on the couch most of the day still with a headache and had a slight fever. By tonite he perked up, ate a full meal and went to bed at his normal time. I'm sure it is too early to tell anything, but he seemed to have a pretty good day today PANDAS wise. We will keep you posted. Please ask if you have questions. Alex
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