shjames

Dawn, Yes, that was me, and you are welcome! IVIG is never easy, but Starbucks helps. I'm so glad to hear your son is doing better, but don't get discourage dif there are ups and downs. Healing seems to be a process, but at least you're going in the right direction! Take care, Shelly

Hi, Thanks for thr replies and encouragement--it's nice to know we're not alone! She's been on Zithromax (250 mg/day) for 3 days now, and what a difference! WIthin the first day, not only did her stomach pain disappear, but the residual PANDAS symptoms went into remission as well. Hmmmmm......very interesting. I would have to say that Zithromax is the antibiotic of choice for her. As for how long to keep her on it, well.....I would say AT LEAST until she was in her early twenties, but more likely much longer than that. After losing all the progress she had made after her first IVIG, there is NO WAY I'm taking a chance on another relapse. When we had IVIG the first time, less was known about the role antibiotics plays in immune modulation and PANDAS, but I believe that clearly it is an important component in managing PANDAS. Yes, I'm worried about the possibility of antibiotic resistance, but we can deal with that later if we have to, right now PANDAS is an immediate concern. One of our doctors was trying to discourage us from treating her with IVIG by saying "IVIG carries serious side effects," but as I told her, PANDAS carries serious side effects. So that's how I feel about long term antibiotics. I hate to introduce any additional source of worry for those families who have undergone a round of IVIG (or are considering it) by mentioning relapses, but information is power, as they say . When we first received IVIG it was touted as a cure, so I was not as vigilant as I am now. I was happy and delighted to be able to put PANDAS behind us, and move on with life. Honestly, we were so traumatized by the experience that I never wanted to even think about it! But....after having gone through a relapse, I have to say that it's not as terrifying as I thought it would be--we knew what it was, and knew how to handle it this time around, unlike the first time. Funny enough, you think you can;t handle any more, but it's possible to surprise yourself with your strength. So overall, I'm taking thr attitude of learning as much as I can, remaining cautiously optimistic, and keeping an eye out for further relapses. Also....I hate to say this (and I hope and pray that I am wrong), but I wonder if puberty really will take care of everything. I have a bad feeling that Drs don;t understand as much about PANDAS as they believe, and we as parents may have to continue some form of vigilance into the late teen/early twenties. But....who knows? As for the typical symptoms of strep, I don;t think all of our PANDAS kids do present them all the tiem. When my daughter was first treated with IVIG, her PANDAS was at its worst, and yet her strep titers were normal. During her relapse, I believe it wasn't necessarily strep, but a slew of viral attacks and upper respiratory infections that were to blame. So, thank you again for the resposes. I'll keep you up to date on the good, the bad and the ugly. Hopefully it will be mostly good. Shelly

Hi everyone, Thanks for the replies, I appreciate them very much. Yes, we do give the Augmentin with food, which helps a bit, but not enough. I emailed Dr. K, and he wants to try Zithromax instead, so I guess we'll see what happens. The idea of trying to go without prophylactic antibiotics is unthinkable, so we have to work it our one way or the other. Now, for the answers to the other questions.... My daughter had a horrifying experience with PANDAS when she was 6 yo after multiple (treated) strep infections. That was 5 years ago, and it was a nightmare to get it diagnosed and treated. She was shockingly, unbelievably ill, completely incapacitated. She was tested for brain cancer, epilepsy, sleep apnea, behavioral disorders, celiac disease, and it seemed like everything under the sun. I discovered IVIG early on in my searching, but could not find any Drs willing to perform the treatment for PANDAS. After repeated, endless searching, I found Dr. K, 2 years later. After a consultation and some testing (bloodwork, steroid burst) we scheduled an appointment and she received IVIG. There was an immediate improvement (about 50-60% better than pre-IVIG), very noticeable, possibly because she was so incredibly ill that ANY improvement would have been dramatic. The healing continued (with various bumps along the way) for almost an entire year, at which point she was 100%, or so close that it was indistinguishable from 100%. She was on prophylactic antibiotics (Keflex 500 mg/day) for 1 1/2 years, during which time she was doing terrific. Unfortunately, we stopped the Keflex on the advice of her Drs, who felt she was out of the woods and were concerned about antibiotic resistance. No surprise, she began having multiple infections, and 2 1/2 years after her first IVIG, she had a relapse. With what I know today, it seems crazy that we stopped the antibiotics, and I'm kicking myself, as you can imagine. But as Dr. K told me, we're always learning about PANDAS, and some of the previous advice has proven to be at best ineffectual, and sometimes downright wrong. This time we recognized it quickly, and Dr. K gave her IVIG again 2 weeks ago today. Again, we noticed an immediate improvement after IVIG (about 30-40% better than pre-IVIG), and continued steady progress during the first week. The second week, she was about 40-50% better than pre-IVIG. Unfortunately, a week after IVIG she caught a cold and she took a half step back while she was healing. So currently, she is about 40-45% better than pre-IVIG. My hope is that this positive trend continues, and she will be 100% again soon. Although it is not as dramatic or noticeable, her progression through the healing process seems to parallel her experience the first time. I'll let you know more as we get further along, we're only at two weeks so far. As to the question about her being cured, yes, at the time I did consider her cured. Now, with more information and experience, I've changed my mind about a one time cure. Now I think of the various options more as comprising a comprehensive treatment plan, rather than a cure. This doesn't change the way I feel about IVIG being the right treatment, it was (and is) the right answer in my daughter's case. It simply means that we can't forget about PANDAS, even after IVIG, even if she is 100% again. I always have to remain vigilant, at least until we get her through puberty, and then........who knows? I guess we'll deal with that when we get there. Well, thanks again for the input, any questions/comments are welcome. Shelly

Hi, We just returned form Dr. K last week after a second round of IVIG (whew.....glad that's over!), and my daughter is now on 500 mg Augmentin a day in the am. The problem is that she's having stomach pain with the Augmentin, and I don't know what to do about it! She is also currently taking probiotics as well, but I beleive we may have to switch antibiotics. She was taking Keflex after her first IVIG (3 yrs ago), and I wonder if it would be a better choice, or if it has lost the efficacy after 3 yrs of use? Hmmmmm.......any thoughts on the "best" antibiotic to prevent PANDAS relapse, and one that has little chance of stomach upset? Thanks! Shelly

Hi, My daughter was sucessfully treated for PANDAS about 3 yrs ago (w/Dr. K), and I thought we were through this nightmare called PANDAS. Unfortunately, after a year of continuous sinus infections and upper respiratory problems, she has relapsed as of last month. A lot of new research has been done since she had her IVIG, and we're planning on returning for another round of IVIG w/Dr. K ASAP. However, I was wondering if I should have her immune system tested, and explore the possibility of long term IVIG (say monthly), especially in light of the fact that she NEVER seems to be well! Her pediatrician brushed off my concerns about her constant illnesses, so I can;t get a referral from her. To add to the issue, we recently moved to a new state (NM) and don;t even have a pediatrician here yet! I'm confused and uncertain about how to go about this, what tests should be done, how do I know if she's a candidate for monthly IVIG, and how do I find a good pediatric immunologist? I would be willing to travel anywhere to get to a good immunogist, so feel free to suggest anyone. Am I on the right track here? My mommy intuition tells me we should check out her immune system, but I don;t know what to think anymore. Thanks so much! Shelly

Hi, The full name of Dr. K. in Chicago is Miroslav Kovasevic (hope I spelled that right, now you see why he's known as Dr. K, lol). He's a terrific Dr, and an absolute miracle worker--he gave us our child back. Good luck!

Hi all, The topic description says it all.....I would like to add nutritional supplements to my daughter's PANDAS OCD treatment, but I'm confused about where to start. Her Drs aren't very alternative friendly and she's currently taking SSRIs (Zoloft) so I'm afraid to add anything to the SSRIs that might cause a negative interaction. How do I find Dr that is familiar with both traditional and supplemental treatments such as 5-HTP, Sam-e, etc? I read another post about targeted amino acid therapy that seemed interesting, but again I don't know where to start. Thanks, Shelly

Hi, I just joined the board, I'm hoping others can give me some advice on nutritional supplements for OCD. My daughter is 6 yrs old and has been recently diagnosed with OCD. She's not on medications yet, but she's receiving CBT to help her deal with the compulsions and obsessions. I would like to add supplements into her diet that might help, but I'm overwhelmed with all the different choices and I don't know where to start. If I start her on supplements, will she take them the rest of her life, how does that work? Any suggestions would be welcome! Thanks, Shelly

Hi Shirley, I'm new here, my daughter has OCD too and she's six years old. She's not currently on medications, but she's receiving CBT from a pediatric psychologist for the compulsions and obsessions. Is your daughter receiving CBT in addition to her medications? CBT is very difficult (at least for us), but the therapy really helps my daughter to overcome the compulsions. Shelly (NY)