GatsMom

That's a ton of probiotic! I'd love to get that much into him as I completely agree with your sentiments. How do you manage to get it into your family if you are dosing abx, too? I'm told they should be given away from one another. Does anyone know how many hours away from abx probiotics should be given?

Dr T told me to get florestor I got it at Costco behind the pharmacy area I have been known to open probiotic capsules and mix into kefir or yogurt. Normally they are taken on an empty stomach but our DAN! said that this was the next best thing.

I agree SF Mom. I believe our 3 backslides over 7 years can attributed to dips in his ability to keep something that I suspect he's long had brewing in check. 3 years ago, with our last episode, I started following the DAN! guidelines which really stress gut health. After drinking kefir everyday for 3 years, he was over it so I let up a bit. He also is tired of taking so many "vitamins" that "none of my friends have to take". He'd been so good for so long that I backed off some elements of the protocol. Several months later, boom, another episode. It's been tragic but it's certainly been educational. I'm thrilled to have Dr. T. in our corner and strongly suspect this kid will be a good responder to Augmentin (which we'll be starting today) based on his abx history but once this strep is beaten down, I will not be backing off my gut protocol again anytime soon and will always ramp up in fall. SF Mom, could you please define high dose probiotics? We're back to the big gun, Klaire's Therabiotic Detox support but just one per day. I suspect that it needs to be a higher dose during a flare. Thanks much, Gat's mom.

Agreed! The charting system above does give better at-a-glance data. The flow chart from a few days ago is great, also! Thanks for all of your hard work, Buster! Gat's mom.

We have sleep issues, too, when in an exacerbation. My ds16 takes Melatoning 5mg and a couple of epsom salts baths per week. Interestingly, the deeper into a backslide he is, the less epsom salt (mag sulfate) he can tolerate in the bath without becoming itchy (like, crazy itchy). Start low on the epsom salts if you decide to try that. At about 9p, my whole house shifts into night time mode. We don't use flourescent lighting at all but most table lamps get turned down or off. I burn a little lavender in an oil burner, too. When he goes to bed, I put a calming classical cd on in the living room which he can hardly hear. He knows I'm still puttering around the house or sitting in my bed reading and the house remains quiet, all of which help him relax into sleep which seems hard to find at night for these kids. This is one of our healthy rituals that continue on most nights even when PANDAS isn't a daily part of our life. Best wishes, Gat's mom.

Thanks! So helpful! Gat's mom.

Allison, Shortness of breath is one of the many manifestations of a panic attack in my ds16. Admittedly, when that one started it scared me to death but inevitably when the panic subsides (which is nearly also with the help of meds) the shortness of breath goes too. How long have you been on Augmentin? Seeing any benefit? Best wishes to you, Gat's mom.

Thanks so much. He must be an incredibly busy man, thank God for the work he does. I will try email next as well as phone again later. I hope your son is doing better! Gat's mom.

I was able to find an office address in Ramsey, NJ for Dr. Trifiletti and a phone number. I called Monday to make an appt but got a voicemail recording. Just tried to call again and got a verizon automated answer. Could someone please share his contact info so that we can make an appointment? Thanks much, Gat's mom

My ds16 has had 3 episodes in 6 years. Those episodes went largely untreated so they went on way longer than they should have, darn close to a year each one but there were also long periods of time (1-1.5 yrs) where he was completely asymptomatic. Like you, it was surreal to have it be over. I was twitchy, anxious and it took months for me to release a little and start to enjoy life again. As stated above, I was never the same, though and that's not a bad thing. We've simplified our life immensely and embrace the smallest joys daily. There are things I will simply never take for granted ever, like him getting out of the car and school, smiling at me and going on about his day effortlessly. I cannot place a value high enough on such things in my life. Through the good times and now again the bad, I gain a great deal of comfort by looking at some truths. 1. So much more is known, published and publicly available than there was when he first got sick at age 8. 2. I am quietly determined to explore all treatment and educational options for him, regardless of how unpopular it makes me, how many physicians are relieved of their responsibilities in his car or what a nut job/PITA I am to the school system. 3. There are people like momto2pandas who had it herself, recovered (without cutting edge medical care) and live a happy life now. There are Saving Sammy stories, evidence of recovery and as, I believe Dr. T said, this becoming a childhood memory. 4. There are Dr. T's, K's, L's & B's out there now and with each day the opportunity to add to that list grows. 5. The body is an amazing machine with unimaginable abilities to correct and right itself, evidenced when you look at your child now. These are some of the truths that I cling to when times are dicey and solidify into my belief system when things are good. Enjoy recovery....wallow around in it daily. Gat's mom.

I have some similar "skeptics" in my fold, and I put together small binders for each of them. Knowing their sensitivity (okay, let's call a spade a spade: "snobbery") about the quality of scholarly research, I searched the forum here and downloaded copies of the more technical, medical journal articles and research provided by the likes of Suzan, Buster, Vickie and others. The "mouse study paper" was front and center, followed by some of the other available info I found here. I haven't gotten any feedback from either of the doctors since I left that package in their hands (one is the pediatrician, the other is a psychiatrist), but I made a point of opening a few of the articles up myself for the psychiatrist while I was in his office with him because he is a self-admitted snobby skeptic! Actually, I asked my son to leave the psychiatrist's office for a few minutes ("go get a drink of water") while I arm-twisted the doctor to at least open his mind up a bit more about PANDAS in general. He is a tough nut to crack, however. When my son came back in the room, he grinned and asked, "So, did you guys work all that out?!" To which I replied that I was still working on it but it was okay anyway because Dr. B. only had my son's best interests at heart anyway, and so long as he didn't get in my way, I thought we could work around our differences. I added that, "Besides, Dr. B. knows that if he tries to fight me, I will just find another doctor for you!" Which I will, and you can, too! That's always an option, and they should be aware of that! That little binder of yours would be exceedingly helpful for me right now. I'm sure I'm familiar with some of the work but I have not read the mouse study that I hear about. Could you please give me the titles/authors/journal info on as many of those articles as possible if you have time? Many thanks, Gat's mom.

I agree with Michael. Though its so frustrating in our case to know my son should have been treated during the last episode (as I pleaded) for high test abx from our DAN!, it is clear I still learned a lot from my time with him. There are a couple tests for yeast but I know many would say they are unreliable with a large portion of false negatives. Our doc used to go by the symptoms Gat was presenting with and I do believe he was right on the money. We use Diflucan instead of Nystatin and it's worked well for us, historically, though I know many who have great success with Nystatin. There is also a wide array of naturals if you want to adopt the low and slow method of introducing antifungals. (oil of oregano, goldenseal, caprylic acid to name a few). During our good times, we use a few rotating naturals throughout the week. It kept things good for about a year and a half before it all broke loose again. Now with all of his PANDAS symtpoms back (separation anxiety & ocd), I'm seeing the tell tale yeast behaviors as well. It may all be PANDAS, it may all be candida but I'm sure not sitting around waiting to see what develops. Our DAN still insists on maintaining Gat's dose of Diflucan at the same strength he did 3 years ago when he was an emaciated 7th grader. I've asked him to increase his dose which I know from my pharmacist is possible at Gat's weight but he doesn't want to go that high. He's uncomfortable with abx altogether...which brings me here. We have very good gut support in place for 3 years here and he's at a normal weight with good eating and bowel habits so I really believe we've got more than yeast. Titers last time were through the roof and candida can't do that. What I really believe is that we have is a biofilm encasing strep and candida but we'll have to blast some high dose abx to get things stable before we can address that. The protocol for it is pretty easy to follow and from a bacterial/fungal survival of the fittest standpoint, the theory makes a lot of sense. In the meantime, good gut health can't be overstated. Gat's mom.

I'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes. Gat's mom. Hi MomToCole, The DAN!s go after yeast hard which I believe has merit BUT only if the child can tolerate it. If yours doesn't tolerate a probiotic well, it would be my guess that he would struggle with natural or rx antifungals. I see the word "sawtooth" written on this board and I'm not sure but think it may have a similar meaning to a herx reaction or a healing regression. The latter two are the terms used to describe the heightening of symptoms when a new medication or supplement is added. Some folks actually view them as a good sign, I'm not so sure. I think that when the right meds/supps are added at an appropriate dose the patient should feel better, not worse but I could be wrong about that. In my son's case, he never suffered because of the addition of natural and rx antifungals or kefir to his diet. The battle hymn in the DAN! world seems to be "low and slow" wrt adding new meds/supps. Maybe you need to start very low and slow with your son. Have you ever looked at bodyecology.com? There are many natural food sources that are high in probiotics, perhaps thats a place to start and work your way up to probiotics, then antifungals, etc. I do understand your fear about trying something new and hoping it doesn't do more damage and I'm so sorry that you are going through it. When we have our current backslide under control I will be looking much harder into the biofilm protocol. We actually did 7 days of it but he was already spiraling down and I wanted to simplify everything until he's under control again. I think there is much merit in the logic behind a biofilm as a possible explanation for the strep in our kids that requires so much more medical/pharmaceutical intervention than other kids. A strep biofilm would make sense, particularly but not exclusively, if the child has some possible heavy metal toxicity from immunizations. In my view the abx, antifungals, IVIG and PEX are the guns in this war but just as important is the background game. Gut, brain, immune & emotional support are very important around here. Little things like our trampoline, epsom salts baths are noninvasive calming measures. Online video games with his friends (especially when he can't make it through a day of school) keep him grounded in his pre/post PANDAS life. He's watching a funny movie in his room right now after a very hard, disappointing day and I just heard him laugh a little...first time today. He should be doing his French homework but I think finding some joy in this day is so much more important right now. Just my opinion. Remember, low and slow. See if he'll drink an ounce or two of kefir to start. Gat's mom.

He weighs 150lbs. Yes, we're doing Advil 400mg 3X per day with food. Long before finding this group and before the research on ibuprofen enhancing rx antifungal activities, I knew it helped my son. Back when he was 12, I'd see a difference in him after a really bad day when he complained of a headache and I gave it to him. His headache went away and overall he seemed calmer. So that's now part of the daily stuff since starting the azith. Thanks so much for the advice, we'll trudge on for now.

The augmentin question has been sticking in the back of my head for a couple days. I will give the zith a good two week trial. It would make sense that he might require some time as he was several hard weeks into this backslide with me doing little else other than trying to treat it as a candida overgrowth. Thanks for you input on the augmentin. That sort of information really helps me to weigh things out intelligently. He takes 2000mg of CLO (cod liver oil) as his omega 3 supp each day. The vitamin D3 that he takes also contributes another 115mg of omega 3. Would you suggest he take more? Thanks so much, Gat's mom.

Hmmm. It sounds like Dr. T. needs to speak at some DAN! conference to set these guys straight. Faith, we must have the same DAN! In my experience they don't seem to be big on aggressive abx therapy unless there"s Lyme involved. The best I could get out of him was 250 of zith for 3 days, followed by twice per week for a month. It's all we've ever tried for Gatlin and it's the equivalent of a handful of M&M's. I agree that abx are often overprescribed in benign cases but that's no more of an offense than withholding them when there is so much evidence of their benefit in this population. This is our first true trial of abx at the correct dosage in 3 major episodes of PANDAS. I've learned much from our DAN! and respect him but I think his preconceived mindsets about abx are as potentially limited as a regular peds mindsets about vaccines. Thank heaven for Dr. T, K & L and the others.

Here are our big candida flags, all of which became evident when he was 12. Acid reflux...worse than I could imagine a child having, complete with brown tongue upon waking some mornings. Silliness...laughing more than normal about things...or about nothing at all. Laughing in his sleep. Difficulty controlling his body temp, he complained of being hot all the time but was never warm to the touch or running fever. Craving carbs and sugar more than normal. More tics or stimming. Many of the symptoms our kids have would be defined by others as characteristic of candida overgrowth. Abx and steroid use would just foster more candida. However, you can't blame elevated titers on candida and if it were exclusively candida you wouldn't see improvement with abx and steroid therapies. I do think, though, that exception care of the gut must be taken with our kids when utilizing abx and steroids. Interestingly, there is some research out there now that talks about adding, of all things, Advil behind Rx'd antifungal therapies as it, for some reason, increases the effectiveness of the antifungal. There are a few similarities in what this group has success with versus how my DAN! doc treated PANDAS in my son in the past. We are currently using azith but are still using fluconazole, too. Gat's mom.

Thanks so much! That helps a lot. I'm taking notes throughout the day with happy faces and sad and there are more happy than sad since day 2 of abx so we'll keep pushing forward. I appreciate your input.

I'm unfamiliar with the term "conversion" as used in this group but I can tell you in the DAN! world laughing in their sleep and temperature issues mean yeast. Those moms wouldn't bat an eye at it, would immediately label it candida overgrowth. We saw it a lot in my son during his middle school backslide and sure enough, it and many symptoms went away with antifungal therapy. He's not autistic but that condition also deals with inflammatory and BBB issues and I garnered much good information from those genius parents. Best wishes. Gat's mom.

My ds16 is on day 7 of azith 500mg. While we're seeing some improvement in him overall, transitions (particularly leaving home) and school are still very difficult. School is downright impossible. He pushes himself to go everyday and then is so angry with himself and life that he cannot get through even first period. I'm seeing some improvement but not the silver bullet we had hoped for. Is this normal progress after 7 days? Is it at this time that we should be giving Augmentin a trial or is it too soon? I left a message with Dr. T's office to get a consult. Our kit for the Cunningham tests should be here on Friday. Our DAN! has pretty much thrown his hands in the air and won't rx anything else. I had to call a doc friend to get the 1 month of azith 500mg that I have. Other than the gut support (probiotics, kefir), brain support (CLO & D3) and stress support (Vit C, Methyl B12), is there anything else I should be doing? Could it be important to remember that as a toddler with CHRONIC ear infections we often had to rely on Augmentin to finally clear it? Might that suggest Augmentin as a good abx choice for him now? Sorry, I know that's a lot of questions. Like everyone, its so hard to watch your child suffer when I fully believe there is relief available for him, it's a matter of finding it. Buster's flow chart is great, we're at step 9 and wondering if our current dose or abx choice is the right one. Thanks for any advice. Gat's mom.

I don't feel my son is a good candidate for stimulant therapy (adderall, etc) for attention and focus issues and neither did his DAN! doc. We use P5P (a form of B6) in conjunction with L-tyrosine (an amino acid). We also use pycnogenol (a type of pine bark extract). All are found at our local health food store. Not sure of the dosing schedule for P5P and L-tyrsonine (he takes 50mg & 1000mg) but I recall the dosing for pycnogenol to be one mg per pound of body weight. Gat's mom.

I never thought about YouTube for lessons. Mine wants a drum set bad and I know any form of movement helps him. He doesn't want lessons but wants to know how to play. Things are too dicey, emotionally, for me to commit him to lessons of any kind right now BUT if he could find something on YouTube that might get him started. Thanks for the info about your lad and how nice that you have a doc whose responds so quickly. Hope the good holds for both of you.

I just thought I'd throw out there that during our last exacerbation at age 11, our back yard trampoline became the most effective form of therapy in our arsenal..keeping in mind that I could not get a doc to rx abx, steroids or anything else other than ssri. He's 16 and spending less time on it, though this is the first nice day we've had since he really slid backward. I strongly suspect he'll be out on it later today. But back in the middle school days, in ALL weather conditions, he would go out and jump straight up and down (no flips or the usual acrobatics he's capable of). He'd face away from the house and wear it out for 15 minutes. When he'd come back in he'd be calmer and more focused. When we first met out DAN! doc (our first free thinking doc) I mentioned this to him and he was not surprised to hear it. He summarized to me that when his feet hit the canvas it serves to balance him from a neurological standpoint. Gatlin has lots of outdoor entertainment at his disposal but the trampoline was where he'd head the minute he felt bad. Just thought this might be another tool to add to everyone's toolbox. Gat's mom

I had way more intrusive thoughts than most kids and I had some rituals that made them easier to manage for me. I hid them growing up, my parents would never have understood. They are only now just starting to understand as their grandson goes through it (far worse, though, than I ever did). Interestingly, the day before his first titers were drawn 3 years ago confirming diagnosis, I had him in to see an herbalist in our town. I was seeking answers anywhere and the allopathic medical community had let me down on a grand scale at that point. She did applied kinesiology on him and he tested very strong everywhere except when she puts two fingers on his clavicle and he couldn't begin to resist her pressure on his arm. She turned to me and said in her British accent, "The boy is covered up with strep." She knew nothing of me discovering PANDAS online, she only knew I had a 12 yr old who was paralyzed with fear out of nowhere. As we discussed further and it came to her attention that he had NEVER been diagnosed with a classic strep throat, she asked about his dad's and my medical history. In discussing our childhoods I mentioned that mine was uneventful save for recurring urethral strictures from 16 mos til about age 8. She immediately shook her head and said, "Did you know almost all urethral strictures are strep related?" No, I didn't know! It's her belief that I may have passed this on to Gatlin though he had enough ear infections in the first two years of life to support that theory, too. At this point, I don't believe removing his tonsils would solve our problem and I suspect he may have never been fully clear of strep, a condition that this herbalist says is rampant among those with even manageable quirkie behavior. In my head, I keep coming back to a strep biofilm and a BBB that, for whatever reason, is too porous. Gat's mom.

Hi Vickie, He hasn't complained about it at all today but I'll be changing his sheets in the morning regardless and giving his room a good dusting. There has been a little chatter in the group about allergies as PANDAS triggers. This backslide started shortly after what appeared to be a virus of some kind. Gatlin has never (in 16 yrs) been diagnosed with strep throat but has high titers. All of his episodes come on the heels of a "virus". Since he, historically, doesn't backslide after a cold or after some little viral assaults, I've come to believe that those 3 "viruses" over the past 6 years that brought him down were likely strep. However, I should also mention that this last backslide coincided perfectly with a major flooring renovation at my house. 10 year old carpet was ripped out of the entire house and laminate was put down. He got sick right along side the carpet coming out after being well (no ocd/anxiety) for a year and a half. Coincidence? Gayle