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Everything posted by eljay1

  1. Thanks, everyone for your replies. We have been treating for yeast all along, and sometimes it is worse than other times. The Rifampin seemed to work in the beginning, and then it seemed to lose its effect. I think that he might be herxing from the Bactrim too. I just needed the reassurance. Thank you all so much for letting me vent!!
  2. It's been quite awhile since I have posted. My son is now turning 8 and has had a PANS/Lyme dx for 3 1/2 years. We have done multiple ivigs which have helped tremendously. He has been on zith with Rifampin and we just recently switched back to Bactrim. We are at the end of our resources financially, so we are unable to continue with ivigs. The Rifampin seemed to be losing its effect, so we turned back to Bactrim (which use to be effective). We are pretty sure he has been battling Bartonella, and it just won't let up. Alot of his symptoms are returning--emotional breakdowns, OCD, more tics than usual, etc. I feel so sad, because he was doing really well for the last 6 months or so. At a loss... BTW, we are seeing both a Lyme and Pandas specialist, but live out of state. Can't afford more phone consults, although we have one more scheduled with Lyme doc in 2 wks. Any thoughts???
  3. We have been fighting PANDAS for a couple of years now and have been receiving ivig for this past school year. I am very careful about what we give my son--he is sensitive to alot of things. I have recently heard that thimerasol is used in lots of ivig preparations. (Makes sense, but I never thought about it!!) Has anyone had this experience, and are you requesting preservative free ivig?? Thanks!
  4. Hi! I was at Dr. B.'s too--I am Elliott's mom (from OH-the room next to you). Please don't beat yourself up!! You are doing everything you can to help your son. Our ordeal began 2 years ago after we vaccinated Elliott. I know it was a combination of things that caused his health to decline-the vaccine was just the straw that broke the camel's back. For some reason, our kids have a higher sensitivity to these things. But we will all find a way out of this. I felt so guilty in the beginning (and I am not prone to that kind of thinking!), but I only did what the docs told me to do at that time. We are all smart, careful, loving moms. It just sucks to go through all of this. Hope you see some improvement soon! We will be back in 8 weeks, too, but I am very careful about what I talk about in front of Elliott (it can cause us problems). I look forward to seeing you again, though!! Jennifer
  5. He has alot of different symptoms--gut issues, allergies, ocd, tics, and leg pains. His ocd has gotten quite a bit better, allergies a little better, tics about the same, emotional issues much better, cognition better--able to focus in school better. I don't know if I can put a percentage on it, but after switching to azithromycin and bactrim, plus ivig, he is doing so much better than last year at this time. One of the major improvements is that he is able to play by himself again and entertain himself (he is our only child and demands alot of attention). Anyway, it all seems to be helping.
  6. That is a subject of great debate! Although the verdict is still out on that, my son has had 4 ivigs and is working with a Lyme specialist as well. We have seen the most improvement (over the last 2 years) with this combined therapy.
  7. So they did ok without the orapred? No increase in headaches?
  8. For those currently doing ivig with Dr. B., do any of you use something besides oral steroids for the side effects? I am particularly wondering about those with Lyme or co-infections. My ds7 has a co-infection, and I am wanting to try to stop using the steroids for side effects (we also use Motrin and Benedryl). He gets headaches following the treatments, even with steroids. Any thoughts??
  9. We were also in CT for my son's 4th ivig. We were in the room next to your hubby and son, and I got to talk to your husband briefly. I don't have a lot of specific advice to offer, because there are so many unique factors with each case. I can only say that we are seeing improvements, so we are continuing on with treatment. The alternatives (with neuro/psych) haven't really appealed to me, and my son definately has an infectious component. I just want to encourage you to keep on digging!! It is hard to trust this process with so many varying outcomes, but like I said, the alternatives don't seem to be solving the problem. I know we will all "get there" eventually. Don't give up!!!
  10. Just thought I would give a brief update on my son post ivig. He had an infusion with Dr. B. on June 22-23. A couple of weeks before the infusion, we got the results that he tested postive for a lyme-coinfection. We decided to continue with the ivig and are seeing a lyme specialist at the end of this month. My son has major yeast issues and seems to be allergic to almost all foods. We did pretreat with steroids and motrin/benedryl (I am very aware of all the risks with the steroid usage, but chose to use them anyway). DS did great with the ivig-- a little headache during the infusion, but overall uneventful. Post ivig, he continued to get headaches for a couple of weeks. He also seemed to catch a bug at the 2-3 week mark. His allergies are just as bad (if not worse--maybe because of the yeast/steroid use). He seemed to really improve with behavior adn energy level from the very start. We have had a lot of ups and downs since then, and with all of the health issues involved, I am not too sure how clear the picture will be for awhile. We are planning to continue to fight each infection, repeat ivigs, and tackle the lyme/co-infections as they unfold. Thanks to everyone who posts--I have found such helpful info on this forum! Continue to press on! Jennifer
  11. Hi--I am usually on the pandas board, but have been poking around a bit on both boards for quite awhile. We were set to have ivig in 2 weeks, but we recently got results back (igenex) that might indicate a co-infection. We are in northeast OH and need an llmd. Several months ago, I looked into the llmd website, but I would really appreciate a recommendation from someone who has been to a doctor. We will, of course, travel if we need to. Thanks!
  12. Thank you! Those words are so uplifting and so easy to forget when we are down. I have been struggling so much with anxiety this week and the psalms always seem to pull me out. Thanks again for sharing.
  13. You're not alone!! I feel the same way every day that we miss out on all of the "normal" activities that the people around us do. Lots of people think I am crazy--I feel that way on a regular basis. But I know my son and I know something is not right. I am still searching for the answers and I get tired of people telling me that I am too involved. Keep going--don't give up!!
  14. I have to say that I am always a little spooked out when I read posts and realize that there are so many others out there with similar situations. I always think we have to be the only ones with string, Izze caps, duct tape, and old card collections laying EVERYWHERE around the house. I finally went to target and bought containers for all of these little collections. Now we have containers everywhere. What happened to my nice little organized life??
  15. Do you mean something similar to the Myer's cocktail? If so, we tried it last summer with our ds6. It was a little traumatic (with the needle and all), but we were able to use a rewards system that helped him alot. The treatment seemed to help boost his immune system and helped with his allergies a bit, but the results weren't lasting for very long. Hope this helps!
  16. No, we haven't done Ivig yet. We will consider it though, once we try everything else. I want to pursue lyme testing first, and give abx a little more time. We've seen some great improvements, but it is still early--there always seems to be setbacks along the way, though. Ugh..
  17. Hi, I am usually on the Pandas board, but I am also pursuing lyme testing for my ds6. Do you have any suggestions on finding a llmd in or near NE OH? Thanks!
  18. After collecting more "normal" labwork, I am ready to pursue Igenex testing to rule out lyme and coinfections. I am doing this through Dr. B., but I can't remember what he said to call and order. (Also, I thought I would make the process faster by asking all of you--his office has its administrative challenges:) Anyway, he said I can go online or call Igenex (which I did), but what am I ordering??? Help!!
  19. Eljay - you have been through so much and clearly are aware of all the good things to do. Do you know what the source of the infection is in your son? Do you know if the problem is with strep or mycoplasma or lyme, or sinusitis, or allergies..... do you know what is causing the infection and/or inflammation? Not 100% sure about what the source is--I think it is a combination of things. We get labs back for myco, lyme, strep, etc. tomorrow. Also, I know he has tested positive several times for yeast. We are also checking for other gut bugs. Allergies are also a huge factor. His testing from last year showed some specific food allergies, but he has developed alot of intolerances as well. It will be interesting to see what results we get this week. I think that will help explain some things regarding his response to the latest treaments(abx and steroids). Of course, Dr. B. thinks there is strep in the sinuses (seems to be a common thread with Dr. B.'s patients), and I would concur that his sinuses are probably harboring infection, but I think there are other things going on as well. I hope to get a clear picture of what is going on soon!
  20. I am sorry that you are going through this. It sounds very similar to my son at age 6-7. You mention that you are using antifungals and probiotics and that is good. Are you also using charcoal or bentonite clay to help with detox a bit? Be sure to do them a few hours away from probiotics and a few hours away from any meds or supplements (which is not easy to find time to do). Also, are you giving probiotics at least 2 hours away from antibiotics and antifungals? Also, limiting sugar and yeast might help a bit to not feed the yeast in his gut. Have you read "the yeast connection"? I found it helpful when we were having similar problems. Hope things turn around for you soon! Thanks for the suggestions. I have bought the charcoal and have never been able to get the timing right. I have been so afraid it will suck up the antibiotic--will it be fine if it is 2 hours away from the abx? He is currently on diflucan, probiotics, and we try to limit sugar as much as possible. I have read the yeast connection and feast without yeast, as I have a HORRIBLe yeast problem too. I just hope we can get it right eventually. He was doing great over the summer (with gut issues) because he wasn't on antibiotics, but his pandas symptoms were out of control!! Ugh!!!Not sure what else to do...
  21. Just an update on my ds6--we saw Dr. B. at the end of Jan. and started him on augmentin and a steroid taper. I'm pretty sure my son has a few different things going on. (Is that an understatement, or what??) He has multiple food allergies/intolerances and gut issues, and we are waiting to hear back on all of the labs for coinfections, etc. Anyway, he responded like a champ for the first week--it was the first time his tics/ocd stuff had gone away in a year. And we have tried LOTS of different approaches (minus heavy meds.) to help alleviate his symptoms. After about a week, he got really hyper and had an itchy butt, so we put him on an antifungal and upped the probiotics. Slowly, the positive effects from the abx and taper seem to be disappearing, and most of the old stuff is creeping back in. (I should add that he got sick with what we think was a virus during the 2nd or 3rd week into the new meds.) Now he is super ADHD, hyper, constantly silly with "butt talk" and also is having some diahrea which, with all of his gut trouble, he has never had before. I have a phone consult with Dr. B. on Mon. to discuss labs and everything, but I am so bummed out. It seems that I am always trying to put out fires--I just want something to have a lasting impact on my sons health!!!
  22. After seeing our ped and explaining alot of the odd things happening at home--"He's fine. He's growing, isn't he?" Whoa.
  23. Shadowtails - sorry for the backslide. I am wondering when you changed meds and if you contacted Dr. B about the backslide? He is usually pretty good about problem solving these things. Do you use an antifungal? Probiotics help to keep good bacteria in the gut, but they do not remove yeast. You may need an antifungal and a probiotic. You may also need a different antibiotic. I would let him know you are having problems. It may take him a couple days to get back to you, but it would be worth it. I'm kicking myself in the butt right now wishing I would have called him sooner. I did'nt call right away because I was hoping that it was a short backslide and then progression like last time. He is off on Fridays so I will be calling at 9am sharp tomarro. All she is on are: prednisone and azithromycin. Hey shadowtails--My ds had a really bad fever last weekend and I wasn't sure if he might need an abx switch. I called Dr. B.'s answering service and had him paged. He called me within a couple of hours (on a sun.) and really worked things through with me over the phone. It's worth a try if you can't wait til Mon. I couldn't--my kiddos fever was 104!
  24. We have just recently begun treatment (about 2 months ago) and have been on zithro and now augmentin (plus steroid). After a year and a half, his tics and ocd are slowing down. He has never fully remitted. I have the same questions as you, and I think in my sons case, he has several different things going on in his body--not totally sure what they are, though. Wish I could help you more, but I feel your pain and burning questions!
  25. I don't know if your kiddo is prone to yeast, but we are seeing Dr. B. and are on a similar protocol as you have described. we are just finishing the orapred taper, and I had my DAN doc call in a pres. for diflucan. My son is showing some signs of improvement overall, but I know yeast is a huge problem for us (stinky breath is sometimes associated with yeast too). Dr. B. said that probiotics should be enough, but we needed something more. Just wanted to give you a heads up before you get too far into the steroid.
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