Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by beeskneesmommy

  1. Hi - I welcome opinions from all, and particularly would like to hear from you, LLM! I am interested in perhaps trying Enhansa. My son has come very, very far with 2 years of Azith and Augmentin, daily, as well as 1 round of IVig last Sept. However, the very best that he has been over the last 6 months is when he has been on Diflucan, daily. It makes a gigantic diference - I have stopped and started x 4 to make sure that my observations are correct. Here we go with some difficulty again this morning since I stopped it last Sun. He has minimal Candida issues, althought it is present. I believe that the Diflucan has anti-inflammatory properties and is working on this separate mechanism for him. Our plan is to do another round of IVig in about 12 days, blast him with a 30 day run of Clindomycin along with 14 days of Rifampin. The Azith will stay on board and the Augmentin will D/C at the start of the Clindo. Obviously, I cannot put him on Diflucan indefinitely, so I am looking for an alternative. Could Enhanza be it? Would you mind posting a link to the correct product so I do not get into an imposter on the Internet? Are there any thoughts, suggestions, ideas regarding what I have written about? Love the feedback, thx!
  2. It was clear to me after several months post acute onset that I needed to put together a multidisciplinary team. Each specialist brings something different to the table and they are all valuable to me. Recovery from PANDAS/PANS is no small task and is not inexpensive. Our primary doc for immunology is Dr. B and our primary doc for IVig (only had it once, with great success) is Dr. L. We see Dr. E at Dupont (formerly of CHOP) for our checks and balances at this point. We have another immunolgist as back up, but we have not seen her for a year as she has been between practices. I direct the avenue that treatment takes based upon research, valuable feedback and anecdotal evidence from other parents, lab results and opinions/ideas from our primary specialists. I have found myself in this position for the reasons cited above. No one doc has all of the answers. Of course, finances and geographic location come into play as well as many other factors. I do belive that Dr. L and Dr. B both consider Lyme, Bart and other tick borne infections. However, as is appropriate, if the infections are significant, they refer out to an LLMD.
  3. PS, Dr. K is the pioneer of IVig for PANDAS kiddos. He knows what he is doing, according to the feedback that I have gotten from other parents and my impression during a teleconsult with him....hang in there!
  4. It should be 1.5 - 2 g/ 1 k. My son weighs 45lbs. and gets 40 g total over a period of 2 days (20 per day). This is converted at the weight of 2g/ 1 kg. I am for the 2 g instead of the 1.5 g. We had amazing results. This is the dosage that Dr. Latimer uses for us. Hope that helps.
  5. Daily Nasonex worked wonders for us, although I have read that others have had some issues with it. We couldn't manage allergy season without it -
  6. Good points above, although I am not at all versed in the genetic pieces that LLM is. I will add that I likely spoke too quickly with a knee jerk response. I have a strong belief about abx being needed for PANDAS treatment, in order to clear infection. I am not, however a fan of psychiatric meds being used liberally, although a handful of people have reported to me that SSRIs have worked - I would not put them on board with my son. I made an assumption that your PANDAS specialist is monitoring very closely. I also have pretty strong feelings about "non-believer" docs that aren't interested in discussing the illness, rather, negate without considering the validity of the illness.
  7. I am so happy for you! ABX took our son far, but IVig much further. It will me 8 months in mid May and he looks better every day. He still has occasional minor flares, so we plan to do another IVig in mid May to pump him up before tapering down the ABX. It has been a long journey, but we are in good shape!
  8. OK, so that IS a spooky list. Is it more spooky than 2.5 years of daily abx, including 2 years of Augmentin 2 x D and Azithromycin 1 x D starting at age 4? Mind you, this is only the DAILY abx time period. There were many runs of the 10 dayers prior to DS having his tonsils out at age 4. NO. You are NOT crazy. I think we have to be careful of so many abx, but without them my son would have been misdiagnosed with severe Autism and living in the rocking, hardly verbal abyss into which he fell post T&A 2.5 years ago. Instead, he is thriving. He is a social magnet to other kids and highly engaged, reading at a 3rd to 4th grade level (currently in kindergarten), taking Tai Kwon Do, and living an amazing, happy life free of most PANDAS symptomology. Granted, he still has flares occasionally, but they are pretty darn mild. Our family is no longer living in crisis. We have been NORMAL for quite some time! It was bad, I mean REALLY bad for quite a while and I truly believe that without abx to clear to the infection(s), he never would have made it. We do the Diflucan and probiotics. Although it has been quite a while, we did lots of Ibuprofen. Hang in there, keep fighting the good fight and follow your gut!
  9. Hi B, Tried to PM you and it says you cannot receive messages. Just an FYI, wasn't sure if you are aware. @PANDASPHILLY: Not sure why it did not let me get messages. It is not disabled...
  10. 2g/1k was Dr. latimer's dosage for my son, age 6, 45 lbs, last Sept. We only did it once, without consecutive IVig's thereafter, but he tolerated it very well. We will be doing the same dose in a couple of weeks.
  11. My 6 yr. old is 46 lbs and has been on Azith, suspension, 200/5 1/2 tsp. per day for 2 years (his weight has not been below 40 for 2 years). In addition to this, however, he has been on Augmentin 2 x day. Hope that helps.
  12. I think it is linked to whether there are yeast issues or not.the right probiotics can help sometimes. For us, Diflucan helps tremendously. In addition, Omega 3's are a known tic helper, so make sure your kiddo is getting them daily...however, be careful which ones - too much fish oil can be a problem for some. We just use kids chewables like "Lil' Critters".
  13. We found this to be true and discovered it ourselves with our son 2 years ago. We were easily able to find another chewable probiotic. I have had only 1 specialist tell me to stay away from it as yet...
  14. If a kiddo is over age 8, they can give a prophylaxis of doxycycline, most effective within the 1st 24 hours. Not sure what they would use for s kiddo under 8. Although I do noit believe this to be totally true for our immuno-compromised population, typically it is believed that the tick needs to be attached for 24 hours to transmit Lyme. If the tick was "new" and not engorged, the chance of contracting disease is decreased. However, I believe that this rule (stated confidently by most docs) may not be completely accurate. I would take him in ASAP.
  15. We see Dr. B, Dr. E, Dr. L, and Dr. O. We are very happy that we added Dr. L to the treatment team. DS6 had an IVig with her last Sept. that made a huge difference. She is a no-nonsense gal!
  16. "Split Personality", or Dissociative Identity Disorder (DID) is very rare. I would not go there at this point! He is 3, and they do tend to get involved in their fantasies to a great extent at times. My son was dx at age 2.5 and during his most ill times (ages 3.5-5) it was not uncommon for him to forget things, much like what you are describing. I do belive that there is a dissociative process going on with these kids sometime, mainly due to so much going on inside of their heads that they fail to register what's happening in the world around them (i.e.: whom they just played with, where they just were). My son also had a short period of time when I believe he had auditory hallucinations and at least on visual hallucination. I believe that this is PANDAS symptomology. The aggression fits in as well...
  17. I understand. I was scared to death but I know it was the right decision. He had come a long way from daily abx alone over 2.5 years time, but we just couldn't get him over that fence. The IVig changed everything for us. Good luck and know that Dr. L uses only the safest product (Gamunex) and does not prescrbe IVig liberally - let me know how it goes!
  18. Go into it with hope, but know that with any doc, at any dose, your child may need it more than once. It all depends upon age of onset, type of infection or multiple infections, whether the infection(s) have been cleared, degree of illness, comorbidity, and more. Each child responds differently to IVig. Some show positive changes immediately, others don't begin to show significant improvement for several weeks (mine really started to improve significantly starting at about the 6-8 week mark), some have lasting effects and some do not. However, for many, many people it is a wonderful product with impacting improvement for PANDAS/PANS kiddos. The only regret that I have is that we did not do it a year earlier. DS6 had IVig in Sept. 2012 w/Dr. L and I wanted the slightly stronger dosage that she prescribes. He is doing extremely well now, but still has some occasional flares. We are planning another in May to knock it out and boost his immune system in order to get him off so many ongoing abx. We paid out of pocket as our insuarnce did not approve it. It was worth every penny and more.
  19. I have no clue as to the answer to your questions, but I have to tell you that you cracked me up (a rare phenomena for PANDAS parents) when I read your title. I actually AM old enough for the originals, haveing given birth to my son at age 42!! Good luck on your quest for answers to interesting questions! -Kath
  20. Make sure to have him on a "sterilizing" run of antibiotics before, during and after the T&A. Sometimes the Strep breaks free at the surgical site and colonizes in the body (like in my son's case). We did not have antibiotics for the T&A which was a big mistake! If you have lots of heavy antibiotics on board it will guard against this. Yes, longer term, my son is better without tonsils. I would hughly recommend going forward, making sure that you have the antibiotics as precaution. If your kiddo is solely Strep throat, removing the tonsils should help!
  21. So happy tp hear it! It has not been a "light switch" for us, but DS6 is almost fully recovered as well. Long journey but he now fluctuates betw. 95-100%, with occasional minor flares. Because of the flares, we are going to do 1 more IVig (he had 1 in Sept., 2012) and hope to say goodbye to the flares. We plan to get him off of most abx except an Azith prophalaxis over the summer. Life is very different for us now...happy. For those that are still struggling, I do know how dark some days can get. Recovery is absolutely possible!
  22. Great to hear Thenmama! We are almost there - just minor flares and occasional tics when tired. @Arial, Dr. L told me about the urine but I was unaware of the tears. That would freak me out before I put 2 and 2 together! We do have to have a suspension compounded, but at least the Rifampin is only for 2 weeks. We have been pretty lucky with the gut since he has been on big gun abx steadily for 2.5 years! I am hoping that this will set him up for a great summer and the start of his new school and 1st grade in the Fall. Warm thoughts and positive healing to you both!
  23. Hi all: Here's the plan, which makes sense, but I wanted to run it by you. We are having a 2nd IVig in May. DS6 is doing very well, but has minor occasional flares when exposed. Strep titres have gone up/down over the last 2.5 years but no + Strep tests and no niticeable infection. He is one that reacts and has elevated titres due to exposure. He has been on Augmetin and Azith daily for almost 2 years and had his 1st, very successful IVig last Sept. The upcoming IVig is to try to knock out the last of the intermittent PANDAS symptoms. The plan is, at the start of the IVig in May, take off the Augmentin and start 30 days of Clyndomycin. At the same time, 14 days of Rifampin. The Azith will stay on board. After the Clyndo and Rifampin are completed, the Azith will stay on board and then taper down as a prophylaxis. The doc's idea is to blow out any residual Strep. For those that have experience with Clyndo and Rifampin, do they have the same antiinflammatory properties as Augmentin? Does this sound feasible for his gut? He has had some elevated Candida, but is being treated with Diflucan daily. I will keep the Diflucan on board throughout the process, then test him for Candida again....
  24. Interestiongly, according to another PANDAS mom that I have conversed with, some digestive enzymes are utilized to "bust" biofilm. Your report makes sense to me with this in mind.
  • Create New...