GatsMom

Great blog and I'm with you on the anti-inflammatory piece. Have you tried the omegabrites that momto2pandas really likes because of their 7:1 EPA/DHA ratio. We switched to the a few weeks ago and have seen some nice gains. At the time it was the only new thing we'd added having taken away abx and antifungals because of the state of his stomach. Enhansa was added yesterday at a very low dose. Your approach makes sense to me and I'm sure sorry for the rough time you've had lately. Hang in there!

We just added organic tumeric to DS13's supplement regimen about 10 days ago, and so far, so good. He's taking so many supplements in addition to the abx, it is difficult sometimes to acknowledge any particular effect as being tied to any particular addition, but he's definitely feeling better and behaving better! Thanks for the blog! Yesterday was our first day of Enhansa (enhansed curcumin supp). I'm starting slow at 75mg once per day. According to Lee Silsby's diagnosing schedule it should be 150mg once daily for the first week but I'm cautious about die off in a kid who already has a lot on his body's plate. How much are you giving your ds13? Gat's mom

Yay!! Definitely a better heading.

Wow, Michael, I had no clue prevacid had an antifungal quality to it! Gat does well as long as we don't skip probiotics and prevacid. I should mention in keeping with the topic that Dr. T brought up a few days ago, the only time we have reflux/yeast/gut issues is when he's in a PANDAS/PITAND exacerbation. Chicken or the egg?

momto2, I would definitely give a trial to L-lysine given what you wrote above! It gets some good press in the fibromyalgia world where EBV is prevalent. I always have it in my house and at the first sign of anything viral, I ramp it up. I have a 94 year old client who says as a child she and her siblings were made to take it all winter long. btw, thanks a million for the lead on omegabrite! We started on 2/21 after a horrific backslide that forced us to give up Biaxin for myco p. Some days are still way less than optimal but he's tolerating the omegabrites (3 per day) well and I believe they are having a good effect as he's showing improvement and that was our only new addition until yesterday when we started Enhansa for more inflammation control. Gat's mom

My son will sometimes wake with a brown tongue that can be anywhere from just the back of his tongue to covering it. He reports a bad taste and can tell me its brown before I even look. It always coincides with the symptoms we call acid reflux but that our DAN! doc used to call yeast overgrowth. In my son's current state, if we miss one day of probiotics or prevacid 20mg before bed he'll wake up with it. It's interesting to think that he was dealing with it last weekend and many times during his middle school experience and in neither of those cases were abx being used. In my kid, it's a good barometer of the fragile state of his gut on any given day. Gat's mom.

Excellent job on the epsom salt bath! Count that as a score for you. Wow, you're up all night? If sleep is a big issue right now, maybe there is a better time for the probiotics. I was thinking about you today and wondered, since the probiotics have been tough on you in the past that maybe even starting with a very small child or baby's dose. Any is better than none and you can work up from there as your body gets accustomed to it. Keep up the good work!

I'm all about the reward system but there was a point at the tail end of my son's middle school exacerbation where all of the reward in the world couldn't help him to focus of keep from being impulsive. Our DAN! suggested using P5P and L-tyrosine and we also added pycnogenol. All naturals and they worked pretty well for him taking the edge of the impulsivity that really causing trouble in the classroom. We used a blend of the reward system that was geared exactly toward what he was capable of achieving in combination with the naturals and got through 8th grade. Hope that helps.

In the world of oncology, a multidisciplinary think tank like you describe above happens all the time in the hospital I'm affiliated with. It's called a tumor board and all new cases are brought before the board for all to review and comment upon. I happen to be that massage therapist that you also mention who works on patients and families in a tiny oasis inside the hospital. There is every reason to believe that cases like our kids will someday soon be reviewed in such a way, approaching treatment from a variety of angles. There are docs like T & K and the technology exists. We need a few more players for this dream team but I know they will come with the press this condition is starting to receive. Hang in there, you really are doing a remarkable job!

Wow. Has to at least have you thinking about Chemar's quote by Pasteur that indicates its less about the microbe and more about the terrain. I have said for 4 years that 99% of what I do for my son is in an effort to "level the playing field" so that his body can right itself.

thank you for posting were you on a high enough dose for your weight? i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age.. from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs i also understand you may now have some other underlying issues... keep in touch And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help. Gatsmom, Thanks for the advise! I've been drinking lots of milk and have alot of yogurt. I was on probiotic supplements too but have stopped taking all my supplements cause they hurt my stomache. My mom loves the herbal and natural approaches and also encourages me to take epsom salt baths but I have extreme difficulty with things like showers and baths as well as brushing my teeth. Normally I am very clean and like to look nice but I cant keep that up when Im sick. Any advice on that front? Thanks, PANDASkid Wow, you are beautifully articulate for your age! How about a foot soak with epsom salts and working your way slowly up to a bath? One tiny step at a time. I wake my 16 year old up very early in the morning (like 4am) to take his probiotics, he's up for 30 seconds and rolls over and goes right back to sleep. They are long digested before he wakes up for good. I wonder if that might help with any stomach upset. My son has a very, very sensitive stomach when he's in a PANDAS exacerbation. Maybe run that trick by your mom and see what she thinks and start slow with your dosing. My son skipped early a.m. probiotics for the past two days because he had a friend at the house overnight (a miracle in itself) and woke today with stomach pain and a brown tongue all over again. You hang in there and good job being so proactive in your recovery!

Hang in there. My dd had one bad day a few days ago and then is back to her new and improved state, over all. A little difficulty here and there but much improved over all. Angela We're having the same experiences as Angela. I know for both my ds16 and I, those backslide days that come after a string of good days are PARTICULARLY difficult. Do your best to hang in there. Her body is doing its best to recover itself and she will forget about today likely far more quickly than you will. So sorry about what you are going through! Been there and tomorrow could be a much improved day for you both. Gayle

Dr. T, During his middle school exacerbation, Gat failed to have a solid BM for over a year. It coincided precisely with his PANDAS (or, in retrospect, likely PITAND) episode. He was never diagnosed as Crohn's, the DAN! doc attributed it to leaky gut, yeast and inflammation. As he healed, emotionally, his gut healed right along with him. During his 18 month reprieve before this exacerbation, he had no gut or bowel issues at all. The beginning of our current exacerbation brought about the same gut and bowel issues again though they, like everything else, have stabilized in the past couple weeks. We have MS, trigeminal neuralgia and vocal tics in the family tree (maternal grandfather for TN & tics and his brother had MS). We can definitely link Gat's bowel issues to PANDAS/PITAND episodes. Gayle

Within 3 days for us and Gat is IgM and IgG positive. I view the cough he was having as a die off or herx to the biaxin but the stomach stuff was really unlike what I'd expect to see in an abx driven die off unless it was treating an infection of the gut. We couldn't have carried on any longer at that particular time even if it was die off without some sort of mood stabilizing meds and serious pain meds for the gut (which would have brought about another whole set of probs). As I've said, I would LOVE to see him give it 7-10 more days on the biaxin XL but I can shove them down his throat. We are seeing good things now and I credit the week of biaxin complemented by what we're able to get into him now.

I saw that, too, Vickie and Gat would normally be not be considered immune compromised but I will say that when, now and historically, we've done things some small moves to strengthen his immune system he doesn't show any worse for the experience. So far, we've had no negative backlash from the echinacea and OLE (except the occasional burp back taste) but we're only on day 4 of it. OLE started a few days before.

thank you for posting were you on a high enough dose for your weight? i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age.. from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs i also understand you may now have some other underlying issues... keep in touch And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help.

Within 3 days for us and Gat is IgM and IgG positive.

My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG. We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast. Hope that helps, Gat's mom May I ask what naturals you are using to treat instead of the Biaxin? I am currently on Biaxin for a sinus infection but have asked the doc to switch me to a Z-pack b/c of the stomach pains, diarrhea, and headaches I've been having. I am on day 4 and I just can do no more! I am taking heavy duty probiotics and a probiotic drink as well as trying to keep my diet simple ie; pasta, rice, sourdough bread, etc. By the way, I'm usually on the tics/tourettes side as my son has a tic disorder and I will possibly be looking into PANDAs if he has another episode like he had last fall. He had some bedwetting, sleep disturbances, and major anxiety. It's taken me until now to realize that we might have a mild case of PANDAs going on. What I can't understand is that he's so normal otherwise except for the tics. OK: how did I get off topic, LOL!???? Anyway, if you can provide me with info. for cleaning up an infection naturally, I'd love to hear about it! Thanks, Bonnie Hi Bonnie, The echinacea was the suggestion of our herbalist after she checked her references for a natural that acts as a macrolide (the biaxin class of antibiotic). The olive leaf extract was my suggestion after I cross referenced her echinacea suggestion online and found almost as much mention of olive leaf as echinacea for myco p. Since we have history a couple years ago of OLE really helping with his ocd behaviors and the two are not contraindicated we are doing both. I will say it again though that the 7 days we had on biaxin definitely did help and possibly set the stage for the naturals coming in and continuing to help. He continues to improve overall daily right now. The occasional moment of panic but they are significantly less than 2 wks ago. I've also been doing a serious amount of reading on inflammatory cytokines and what can be done about them. I'm really excited to be given Enhansa a try starting as soon as it arrives. I firmly believe that the steps we're doing to decrease inflammation are as valuable as anything now that the infection piece seems to be at least stable. Enhansa is our next big assault on the cytokine storm that Dr. T. talks about and my herbalist has been saying for months. Gayle

So interesting. Gat has long, historically, has long, healthy remissions of more than a year at a time during which he has absolutely no stomach issues at all. The only time he has stomach pain is when he's in a backslide and then the stomach pain is every bit as life limiting as the anxiety. Thank you so much for your continued work and offering hope to these worn out kids and their parents!

My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG. We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast. Hope that helps, Gat's mom Vickie: His stomach was killing him ALL the time, not just when he was anxious. His acid reflux was out of control, waking every morning with a brown tongue. Omeprazole 20mg at bedtime wasn't even denting it, neither did propping his pillows and his mattress. Non-complex foods, tons of homemade soups didn't help either. He ate as little as possible and weight was falling off him. Smartyjones: I'll preface by saying, I'd rather be doing biaxin...what we're doing now is really plan B. *Myco control: echinacea and olive leaf extract (we have a middle school history of good results with OLE for ocd behaviors. this was before we knew about myco, which i believe he had in middle school, too. the autism world just related OLE for ocd behaviors. upon researching i found it helpful for myco which is likely the connection in my son.) *Inflammation (gut & brain): omegabrites. Have ordered Enhansa and it should arrive within a day, will be starting very low and slow. *Immune support: Vit C and zinc (as well as omegabrites, echinacea & OLE) *Sleep support: Epsom salts baths nightly, melatonin 5mg lozenges *Adrenal support: Drenatrophin PMG (Just started product yesterday suggested by our herbalist...she also started me on one) *Gut support: Klaires Therabiotic Detox Support probiotics (100 bil per day), omeprazole 20mg at bedtime, yogurt, kefir Most of the above were in place before he boycotted biaxin and would stay in place if he retries it. I do feel a multisystem support plan is needed for these kids. Their bodies are under so much strain.

That's a great report, Angela! Good for you and your family.

My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG. We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast. Hope that helps, Gat's mom

I certainly don't have the answer to this, but I wanted you to know you are far from alone. The frustration to anger to rage meltdown cycle is one I know all too well. He flies off at any suggestion I make but I am also not allowed to be absent from it eihter. I pace or sit and gently rock. I have several 3X5 cards with everything from Bible passages to quotes from other inspirational texts, all of which speak of maintaining hope and love. I read them over and over again to myself while he goes through what he goes through and look for any shred that I can grab hold of to get me through that moment. They always pass, we are always both exhausted after. Afterwards I begin a DEDICATED search for even thesmallest non-PANDAS thing he does to be openly thankful for. I use it as evidence of him getting back on his feet after being knocked down again and trying again to reclaim his life. It has been hard in the darkest moments to not lump him in as part of the enemy and I'm always working to distinguish clearly it is he and I versus this disease, not he and the disease versus me. Stay strong and know you're not alone.

Angela, Can't wait to hear how she does. Due to stomach upset from regular Biaxin, Dr. T switched Gat to Biaxin XL yesterday. We picked up the Rx today, gave him another full day today of no abx and fighting yeast to try and get a foothold on it. Tomorrow we start XL. My fingers couldn't be crossed any tighter. My son is also a very good responder to Advil.

Yes, there was a cough in our case! Also some occasional chest pain. Also eye pain can be a symptom of mycoplasma. And on it goes, like a club within a club.