GraceUnderPressure

Wah! (I realize it's an oxymoron, but we need a bawling smilie) Thanks, but he's already: taking it after a meal, taking 1 of Dr. Mercola's Complete Probiotics (8 sp. @ 66 billion) ~2hrs afterward, & takes 2 caps of saccharomyces boulardii (which I think is what Florastor is, isn't it?) at bedtime. Should I try to have him ride it out & see if it resolves? Should I add another probiotic dosed more frequently? Should I stop until we see Dr. Rao on Sept 24th? (I'm afraid that option might make his "bugs" more resistant to future augmentin use) Should I go bury my head in my pillow & pretend my life has all been a bad dream & that I will wake up soon & everything will be normal?

Ds18 started taking Augmentin Monday evening. His stomach was a little off Tuesday, a little diarrhea Wed, & today is full blown upset. (He has been taking a probiotic a couple hours after taking the Augmentin dose since we began) He says he smells ammonia when he uses the toilet to pee (but frankly I'm not sure how he would know that smell & I haven't noticed it) He has a level 5 IgG reaction to candida which I have been worried about. I bought a bottle of Candida Clear today just in case. Wasn't sure if it might not be smart to give it prophylactically. What is the usual advice for dealing with the diarrhea? (We're mostly on the specific carb diet so bread & rice are not options for us) And can anyone advise me on any of the rest? ~Grace

I believe that autism & PANDAS are both autoimmune disorders of the CNS. Autism spectrum disorder has become sort of a catchall category for kids with problems caused by neuro-inflammation. In that sense, it would make sense to call PANDAS a form of autism. My kids are pieces of the puzzle for me. All 5 of my kids have food intolerances to some degree & varying degrees of seasonal allergy crud - so their immune systems are all a little bit off. However, whether or not they have neurological issues & how severe they are all depends on what kind & amount of immunological challenges their bodies have had to cope with. Vaccines in my first 4 upped their immune "sensitivity" or maybe "reactivity" would be more accurate - though #4 had the advantage that I had begun taking omega-3's before & during my pregnancy & breastfeeding so he was the least bad off & I stopped doing vax after his 12 mos series, but then he got hit with some clostridia overgrowth around 3yo which messed up his gut. Mercury exposure from dental amalgams to 1st & 3rd born left them the most messed up. My 5th is the only one completely neurologically "normal" & has only a few food sensitivities. So I think there is some immune impairment or vulnerability in our kids that is being exploded by environmental insults.

That's my thinking - I believe they all the recent acronym conditions of our kids are on a spectrum of neuro-inflammation induced by some type of autoimmunity taking place. Mercury, vax, microbes, etc, all just add to the inflammation burden until the immune system is overwhelmed & unable to cope with it all. Stephanie 2, which brand of AKG did you use? It has been hard for me to find outside of the body building industry & I don't know which of those mfr's I can trust. ~Grace

I would appreciate if you would outline the biofilm protocol, please! I have heard of it, but have little idea of what it involves & would like to know more. ~Grace

Our rapid strep throat cultures were neg, but I was told today that we should still have the blood test version done. Well, I started my ds18 on my Rx for augmentin yesterday - I'm desperate for something. I am thinking that will likely lead to a negative on the blood test - can anyone confirm this for me?

Thank goodness you knew what it was beforehand! I just keep praying that the day will come that the pedi's will immediately test for strep without us moms having to know or be creative to get it done! My ds was about 4 when we were at a prayer group meeting we had for moms & tots. It wasn't new, we had been to it many times, though there may have been a few new kids there. He kept leaving his play to come over to where the moms were praying & hug me & tell me that he loved me. It was cute the first couple of times & my friends just smiled, but after a half dozen times, I started wondering what was going on. Add 14 yrs & I am finally understanding that that was very likely the onset of this wretched business...

Vickie, If my ds18 is a PANDAS kid, then he does not get regular strep sx's either. Was your child able to be diagnosed using Dr. Cunningham's tests? ~Grace

Amen, sister! If I hear "corrolation does not equal causation" as a justification for ignoring the elephant in the room ONE MORE TIME, I'm sure I will EXPLODE! It only means that corrolation does not NECESSARILY equal causation, yet they use it as an excuse not to explore things any further - let's wait a decade or so for the double blind studies, then we can take another couple of decades figuring out what to do about it - and I would be willing to bet that corrolation FREQUENTLY is involved with causation.

I'll pm you, Holly! ~Grace

Laure, My understanding is that you want to avoid any probiotic with a strep species in it. Strep thermophilus is a very common probiotic and is almost always, if not always, found in yogurt that you buy at the store as well as commonly in combination probiotics. We are using Dr. Mercola's Complete Probiotics (mercola.com) Hopefully someone else can recommend some other kinds you can consider. The danger is that as the antibiotics kill off microbes in the gut, good as well as bad, the more aggressive, disease-causing strains that are not as susceptible to that antibiotic will take over & create new problems. Clostridia overgrowth from taking Augmentin is a classic example - it can lead to an acutely inflamed gut (a nice way of saying diarrhea, nausea & vomiting) that can progress to chronic GI disease if left untreated. I have been trying to combat yeast issues in my kids off & on for years, & now two of them have signs of some clostridia overgrowth though it has not reached pathological levels at this point. I believe the probiotics helped save us from that. We're now taking a probiotic called saccharomyces boulardii which is a yeast species that actually "eats" clostridia to help keep it at bay. HTH! ~Grace

Cuz it's not in the books...

Emerson, You do not have PANDAS, but you do have Lyme, so no, you haven't been proven to not know what you were talking about - just the opposite. You were right! You were sick with some kind of microbe that your body hasn't been able to clear - it just turned out to be a different microbe. You still need treatment for it, though unfortunately, you will probably have to find a Lyme dr. now. But at least knowing the cause gives you direction for finding healing! That's HUGE! Hang in there! ~Grace

That's really interesting to me - my ds is still normal mentally, but one of the first signs that we began to see at the beginning of his condition, was that he would tell us that he had said or done something that it was obvious he had not done or said. We were very puzzled because it was clear that he completely believed what he was saying (he was the kind of kid who never lied) and got very upset that we didn't believe him. I wonder if there is any research on what part of the brain is being affected to cause that to happen? ~Grace

So we got a rapid strep done for our whole family (7 of us - it was a marathon paperwork session that I did not finish till we were almost through!!!) and the results were negative for all of us. But the nurse practitioner noted some lung congestion in myself & my 7yo. She attributed it all to allergies (bronchitis from allergies?) Interestingly, she gave my 7yo zithromax (which is good because he has had some issues with clostridia in the past so amoxil/augmentin could be a problem for him) & was going to give me amoxil but I talked her into switching it to augmentin. Which I brought home & have begun giving to my 18yo instead. Okay, so I know that some kids take a while before you see any results from the augmentin, but I would like to know what the norm is? How soon might we see results if we are lucky? ~Grace

Whew, I'm so relieved that we're talking about different doctors! What are your ds's issues? Ours is Tourette's (OCD-based tics). How long did it take for you to see any signs of improvement when the antibiotics were started? At this point, we've been declining since the end of February so ANY improvement would be major for us.

Hi Holly! Another Catholic homeschooling family here! I am a revert rather than a convert. We are west of Houston in Katy. We will be going to Dr. R on Sept 24th. You being Catholic will appreciate this - I have a devotion to Our Lord as the Divine Mercy & wear the scapular of Our Lady of Mercy whose intercession I have been begging. Well, it turns out that the 24th is the feast day of Our Lady of Ransom on the liturgical calendar - an obscure title from back during the days when the Moors invaded Spain & the Blessed Mother appeared to St. Peter Nolasco carrying two bags of coins for use in ransoming Christians imprisoned by Moors. But it turns out that Our Lady of Ransom is also known under the title of Our Lady of Mercy! That sign gives me hope that we are on the right track with all this! mati's mom, you have said it beautifully! If I didn't have my faith to sustain me, I would have gone under a long time ago. Like you, I wish God would just send me an instruction manual! I do keep reminding the Lord that I am still struggling with "deafness" and "blindness" and I need Him to help me figure out what to do!

mkur, Thank you for that info! How long has your ds been getting treated? Is he responding well? We are so worried that my 18yo has been so long without treatment (if it turns out that this is his problem as we haven't been tested yet) that he might not get better. ~Grace

Tomorrow I am going to see what I can do to get my kids tested for strep to see if we have an active infection going. I am going to see if I can get a 2wk course of augmentin or zithromax for my 18yo, even if the rapid strep test comes up negative, because that would last us until the appt. with Dr. Rao in Dallas. (1) Is that a bad idea? Will it mess up our test results? (Not sure that we have a choice really - since we all started getting sick, my 18yo has been ticcing worse than we have ever seen him & we are getting really worried - we need to do SOMETHING) (2) It sounds like I should try to get augmentin, but what strength & dosing regimen should be tried for an 18yo who weighs 136lbs. (He was 155lbs two yrs ago ) ~Grace

No, we don't have a regular family doctor.

Thanks for the tips on how to deal with it! The approach makes sense! Unfortunately, we haven't got a PANDAS doctor yet. I made an appt. earlier this week with Dr. Rao in Dallas for my oldest son, but it's not till Sept. 24th. Should I try to get my 7yr old in at that appt, too? A month seems a horrible amount of time if he's fighting strep now. This morning he has been coughing & says his throat is irritated. (We have all been fighting irritated throats as well as off & on nausea for months - I've been blaming allergies, but now I'm starting to think this stuff may have been staying with us since June) Should I try to get an antibiotic from another doctor in the meantime? Or should I just try to treat it naturally with some olive leaf extract & oregano oil? Will treating it either with abx or natural supplements mess up any of the PANDAS tests we will be doing? ~Grace

There is screaming inside my brain right now!!! Y'all have been helping me figure out this whole PANDAS/PITAND thing for my 18yo ds with TS/OCD. Well, he had an exacerbation of his tics around the time we started swim lessons back in June. I attributed it to the pool chemicals. BUT his little 7yo brother came down with some kind of upper respiratory bug that turned into a bout of bronchitis. We have all been feeling off & on sick since then. Tonight as I was putting that little brother to bed, he started up with telling me that he didn't think we should bring our youngest with us on vacation. When I started questioning him, he said he was afraid that his brother would fall off a mountain (we are driving to the mountains - assuming we actually succeed in this effort). I reassured him of how silly that was & pointed out that on our vacation a couple of years ago to see the Grand Canyon we never even came close to the edge & reassured him that we would be there to keep his brother & him safe. He still fussed a little, I reassured him a few more times, but then he finally fell asleep. This is my child who is always sunshine & laughter - anxiety is as foreign to him as, well, anything could be. Yet this is the 3rd or 4th time SINCE HE GOT SICK that this kind of thing has happened - always at bedtime when his body, and therefore immune system, are worn out. I believe that also coincides with his recent increase in crying over every little thing that goes wrong. It never lasts long - like I said he is a very happy kid over all - it used to amaze me how fast he could go from tears back to laughter. It's just like it happens so much more often now. It's been so mild, and I've been so absorbed with worry over his older brother, that it didn't even click till now. I was watching some of Dr. Schulman's PANDAS videos the other night & she talked about when parents tell her they're seeing something in their kid & go 'that's not my kid' and how she thinks PANDAS when she hears the parents talk about their child doing something that is not like them. So what do I do now? (Besides calm down & quit panicking)

I believe a large part of what's going on has to do with the fact that our western diet has been deteriorating to a point that immune dysfunction is becoming increasingly more common. http://www.telegraph.co.uk/health/healthnews/7922504/Junk-food-diet-puts-children-at-higher-risk-of-allergies.html Kids today have to deal with more negative environmental exposures while having less immune capacity to deal with it = increased vulnerability to pathogens. My diet was convenience/junk food for years before I got married & started having kids. All 5 of my kids have some degree of issues with their immune systems. Two of my kids (1st born & 3rd born) who received in utero mercury exposures because of dental work are the most damaged - insufficient resources available to repair the damage, I'm betting. My last 2 kids were fortunate that I had become painfully aware of what my lousy nutrition was doing to my babies & they are the least messed up. My 5th child was born after I had decided no more vaccines until I know what is going on with my kids' immune systems - he is the healthiest of the bunch (which runs counter to the whole "cumulative genetic damage to older parents" theory). My ds with TS/OCD has always had an under-reactive immune system - he has probably had strep multiple times & I had no clue because he did not have typical symptoms. (And similarly, I suffered with yeast for years because I did not have the typical symptoms so the doctor never clued in & I didn't learn about it until I had just had my 3rd baby) There seems to be a mentality out there in the mainstream unreceptive to the possibility that one can have a disease without manifesting the typical symptoms. Because the dietary damage to our immune systems is a relatively recent phenomenon, I suspect that the "shades of gray" type of infections that many of our kids are experiencing is relatively new, too. Unfortunately, being on the forefront of a new frontier is rough going.

I am just wondering why PANDAS kids are assumed to be only a very small number of those who have OCD & Tourette's? As I am looking over all the stuff on it, it seems reasonable to me that it could be the most common cause.

I'm so glad to hear that your son's problems have been found & are now able to be addressed! I have been wondering about the strep antibodies vs. persistent strep in the body myself. I had read somewhere previously that strep can form a biofilm to adhere itself to a mucosal wall & protect itself from the immune system as well as other competing microbes. We have had some up & down experiences with dietary approaches that have made me suspect that something is being affected by it (something besides yeast/candida). I know at this point there are some doctors experimenting with protocols to get rid of biofilm bugs, but I have no idea which doctors or how well their approaches are working. Anyone here know?