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Makes sense @searching_for_help. You are right. I better test before jumping in any further. Often fear what we add or try, just ends up making the balance or lack thereof worse. I live in fear of another dreadful flare so I am trying to be very methodical and careful this time around. Thanks for the webinar link and the reminder about Yasko. Think I'll spend the morning refreshing my mind on these things. So much to consider- so many layers!

I should mention we are trying sacc b too.

Have read numerous threads regarding this but asking again regarding a two particular problems. DS12 is on Augmentin and Azith and though he is doing okay I've seen an uptick in hyperactive, impulsive, very goofy behavior. Sometimes for us that used to mean a flare was approaching but I don't think that is what is occurring. I think it's a yeast problem since adding the Augmentin. We've tried managing his diet, dairy free and trying for gluten free. My problem is that when he is like this he starts to raid other kids lunch boxes at school. He will drink Kefir (give him some before bed two hours after antibiotics). He uses D lactate free formula probiotic. This is new and perhaps I should change. In the past he's had Diflucan but It's possible it caused a very bad die off reaction. Am looking for a GENTLE protocol that could help stabilize his gut. Realize that this is very difficult to do with him on antibiotics. Any suggestions? I've been adding garlic and oregano to his food LOL but need to do more - especially since he is stealing food at school!!!

Thanks cara for posting questions like yours. It's such a muddy world and so difficult to manage. Back when we first started out classic PANDAS was fairly new and though most knew there were other triggers, the strep was the one that stuck. Swedo narrowed the criteria for validity reasons. But as a result, it left out a whole group of kids who had the same exact symptoms -but no strep. Truly heartbreaking. Like leaving them a float on an island and sailing away. As time went on and classic PANDAS began to be more accepted, it opened the floodgates into pretty much everything and anything. I think even the PANDAS/PANS doctors now have trouble keeping up and sorting it all out. So it's much more muddy than it used to be -- but for good reason. Being inclusive rather than exclusive is a good thing - even though it drives all of us crazy in the process. Because yes, the search becomes endless. I do know how you feel. I keep wondering: does classic (narrowly defined) PANDAS really even exist anymore and if so, what happens to those children? Do they all have to end up searching and digging deeper? or do any get treated with antibiotics/possibly IVIG and bingo - the end?

Nicklemama, the conference said to do injectable vaccine vs. mist? I had heard that before. But when did Swedo say "there will be a flare after injectable." When we were stable and doing well we thought getting the flu would be worse than getting the vaccine so we jumped and had only very minimal change in behavior. However, when we were not stable at all and still really in the trenches we had a horrible, terrible flare after flu vaccine. I think it depends on state of health at the time.

Dr. B agrees, as we discussed this specifically over the weekend. Multiple triggers yes, and lyme and co infections yes. But is it all tick borne initiated? No. However, in our past we had clear strep triggers with the addition of flu and parvo later on. Things were stable for a long while until our bottom fell out again in September. Upon reviewing his previous labs, we noted a positive lyme band via western blot which was lyme specific (23) - this was IgM during a flare from three years ago but ruled out because it did not meet CDC criteria and we did no further testing at that time. Therefore now, we suspect lyme or bartonella involvement somewhere in there. Our onion is very fat.

What is the level of deficiency most commonly seen for coverage? DS has had three years of labs consistently showing subclass 2 and 3 deficiency but his levels now are just right outside the low end reference range and his total is normal.

Thanks for your reply! We've been on this journey a long time, had a good handle on things for a long time and then boom. So we are restarting, digging deeper and more fully. 23 and me is always on my radar - just haven't haven't been able to dig that far yet with everything else going on. From your advice it's an important layer. Will add, once infection clears and testing for allergies/infection done. Working on diet slowly! The one thing I've never been very successful with however is ensuring gut health while on antibiotics. I guess that is fairly impossible as you say. I think we currently have a candida problem after adding the Augmentin to Azith. DS is bloated a bit and edging toward hyper. Actually I don't think, I know we have a problem. He's scratching his head and the cravings are coming back. Just not sure how to deal with it gently. I am concerned about a die off reaction as it's happened before with diflucan and it was very difficult. Tipped him right over the edge. Will try sacc b. What a journey!

Long history with manageable PANS (first triggered by strep then flu and parvo). Did fairly well until September of 2013 with recurrent colds, coughs, other viruses, sinus infections. Since then DS12 flares have been more frequent, dramatic and debilitating with headache, eye pain, joint pain, flushing... New plan starting over - recently diagnosed with autoimmune encephalopathy (anti-adrenal antibodies and severe flare with documented acute cognitive dysfunction). Please tell me what you think of this plan? Now on Azith and Augmentin (and probiotic). Doctor wants to do 1 week steroid taper given continued nasal turbinate and bronchial inflammation but since DS is not flaring terribly right now I am hesitant. Ordered new rounds of bloodwork to test family for myco P. and strep - along with the usual suspects et cetera. Depending on lab results will consider moving to Igenex. Doc concerned about lyme and bartonella. Wants to additionally perform more in depth allergy testing given that our worst flares are always in the spring. The only positive test in past has been for dust mites. Also his IgE for the first time ever is above normal - before it was always below normal even though we thought we had allergy issues. Our house also tested with higher than normal count Aspergillus so mold is likely a key player. Once allergy and infectious triggers are addressed, possible IVIG. My questions: do I request MTHFR investigation as well? Is the above the proper order to "peel the onion?" I have lingering concerns about gut health and yeast overgrowth while on antibiotics and am not sure how to address. Doc said a probiotic is enough. Many thanks for all your help. This forum is so healing.

This is a hard decision. The reality is that there are a billion air allergens in the world from dust mites to fungal spores (all houses have some degree of mold and mildew), to pests/insects, dead skin cells, chemicals from our cleaners and "fresheners." Of course what we ingest is equally problematic. All adds up to us living in a constant state of inflammation more or less, with or without cats. Our immune systems are overloaded. So yes, cats can certainly complicate the issue especially if one has a true allergy (IgE/histamine response???) to the dander of a cat. It's not the cat itself, it's the dander. Also be aware, that removing the pet does NOT remove the allergens. Your home and your system are filled with the dander already. Certainly there are steps to take to increase the air quality in the home, and decrease the damage by all the potential allergens. It's probably more of how much you can do -- while dealing the strain of PANDAS/PANS. Washing the furniture, using hepa vacuums, checking your ventilation systems, perhaps installing air filters... All of this you'd need to do with or without the cat still in the home because again, homes are loaded with all sorts of allergens. If you choose to keep your pet (and what about the stress of losing an animal?- certainly something to consider). Make sure, to keep the cat out of bedrooms and to wash the cat periodically to remove excess dander. People with mild allergies can live with their animals but it's a process. And of course, reducing ALL the other billions of allergens would help as well (encase mattresses, pillows, wash linens frequently, check for chemical irritants, dust mites and mold are a real problem...) Good luck. It's a tough call for sure!

Hi, This is just a curious question as I've been reading Dr. T's slides from the conference along with various other theories. I think most of this forum can agree that our children have flares of some sort or another regardless of their baseline. And certainly we all have different triggers from strep to viruses to lyme or any inflammatory process in general. My question is: when do your children flare most consistently and has the pattern changed? Is it before illness (canary in a coal mine?), during an active illness, after a specific illness (several days or weeks?), or more chronic waxing and waning because of underlying inflammation. I'm guessing all of the above but wondering if there are patterns that you see?

DS has been triggered by parvo, influenza and coxsackie. Anti-virals can slow down the virus replication but they do not eradicate the virus - especially those that may convert to a dormant state. I'm not sure if anyone has had significant success with valtrex or other anti-virals. Right now it's a theory - to slow down viral activity and thus calm the responding immune system. Theoretically if a virus is dormant the immune system is not activated so it's likely no issue. The key is to support the immune system. and keep viral and bacterial loads to a minimum.

I think several of the old timers on this forum were successful in treatment primarily because with age, their children's immune system became stronger and more functional in terms of regulation. I am not sure we are all destined to end up in Dr. T's chronic stage 4 scenario. Our path has been so twisty turny. I agree with quannie, the episodes and their responsiveness can change depending on triggers but I'm not sure once a non-responder always a non-responder. Jury still out.

Not really sure but I doubt GSE had anything to do with anything. Incubation period for scarlet fever is 1-7days so whatever exposure may have occurred prior to the start of Clindamycin could be the cause. What dose is your son on? Perhaps the dose was not high enough to ward off a new active infection. Is anyone a strep carrier in your house? The strep might just be acting as it normally does. First sore throat and fever and then 12-48 hours later a rash. Has he been cultured? He will probably require aggressive treatment, perhaps IM or IV and combination since this seems to be so recurrent. Not sure I would have discontinued the Clinda and start Augmentin. Clindamycin in proper doses should have coverage. Augmentin is actually less likely to cover treatment resistant strains long term. See study below. Those doses are for adults however. "In this study in patients with acute recurrent GABHS pharyngotonsillitis, oral clindamycin 300 mg BID and oral amoxicillin/clavulanic acid 1 g BID achieved comparable rates of bacteriologic eradication at 12 days and 3 months and comparable clinical cure rates at 3 months. Patients who received clindamycin had significantly greater clinical cure rates at 12 days. Both regimens were well tolerated."

Agreed cara615. It's a very tough spot to be in! Wishing you all the best and thanks again for sharing the slides!

Also, most of his slides are over my head but i can see he is intrigued by the response to motrin, cox2 inhibition. This inflammatory model is being applied to many psychiatric illnesses including bipolar, schizophrenia, depression - responding to cox1 and cox2 inhibition. Did he comment on this?

Thanks @cara. I guess I'd like to know what they mean by "treat early." His slide says antibiotics and rational prophylaxis. In our case DS responded well to antibiotics. When we discontinued them, we had a nice long stretch of "remission." Yet, things came roaring back. So what does he think "treat early" means and for how long? Assume if clear trigger is identified and eradicated prognosis is good - however that does not cure the biologic problem/susceptible immune system. Any thoughts?

Thanks so much for sharing!

We are starting over with figuring out what to give. A few years ago I had DS on fish oil with a 2:1 EPA to DHA. Total of 1000 I think. Initially, we used nordic naturals but DS, though not in a flare, started doing a bit more tapping/touching compulsions (which seemed to be less OCD related at the time). I thought he was reacting to the lemon flavoring. We switched to another brand, I don't remember which one but it had the same ratio and he did okay though I don't feel like it didn't much of anything. In my mind, I felt like I was helping inflammation stay down but i did not see any change one way or another with behavior. At one point, we changed to a EPA to DHA ration of 7:1 which you will see some recommend. That definitely increased the tapping and touching/sensory type things - though again it didn't cause any sort of flare. Over the last year as we were "in remission," I stopped the fish oil all together and he was fine behaviorally and his focus was fine so I'm not ever sure the fish oil made tangible difference. Now however, DS is sick since September with frequent colds/sinus everything issues including dramatic flares with each one. I'm thinking of adding it back in for the anti-inflammatory effect. But we will use 2:1 and as with everything seems best to start low and go slow.

Thanks everyone. My feeling is that's it all of the above. I think his gut is wrecked. I think his nutrient status could definitely be better. I think he may have underlying bacterial or fungal issues that are not being effectively treated and maybe even worse with the nasal spray. I think the allergies exacerbate everything. And the PANS flares which have been so incredibly dramatic (after such a nice "remission") have been very stressful- thereby weakening him further. I don't know which issue or what came first. We're exhausted. I'm so hoping Dr. B can get this all sorted out for us! Nicklemma- I have thought that he needs to be on claritin/allegra or something but in the past he's always hyped up with oral H1 blockers. We've actually used H2 blockers a few years ago (pepcid). Maybe though he's grown out of that sensitivity and we should try him on Claritin again. I know the allergies must beat him down. He's never tested positive before for anything even though you could see that he had allergies. We're getting our house checked for mold too….

Okay. DS had "impressive sinus infection" late November diagnosed by ENT. Nasal turbinates were huge, red but with a bogginess that suggested allergy too. Three weeks of Suprax. Resolved. Gets another cold, another "sinus incident" and PANS flare early January. Allergy testing finally shows high allergy to dust mites (previously tested negative." We've done all the dust preventions. We've done sinus rinses. Prescribed an intranasal antihistamine/steroid spray. Gets another cold and cough and does okay, mid January but one week later turbinates look awful again, snoring, headache and a HUGE PANS flare. Seven days of Suprax then now on Zith forever. Has a good six days!!! YAY!!! Now he's in bed with chills, cold, left nasal turbinate huge… no flare yet but scared. ENT didn't think fungal. But he does also have chronic itching under one arm. I'm thinking his gut is a complete mess despite probiotics. We see Dr. B next week but in the meantime I am bracing for another storm. Seems I just can't keep him well!

Have heard Myco P is a big culprit for many people. Hopefully it will help you add more pieces to the puzzle. Appreciate your feedback.

Rachel, what testing showed problem with viruses? Titers to specific viruses or immune markers showing a susceptibility to viruses? Trying to learn

We have not done the Cunningham tests. I was just reading about them and wondered about the assays and the specific anti neuronal responses that were being assessed. DS 's ANA is negative, and anti-thyroid antibodies are negative - though he's had reactive thyroiditis with sustained significantly elevated values after flu and parvo and he now requires thyroid treatment. He also has a presence of anti-adrenal antibodies. I guess I was just wondering if there is reason to do a Cunningham test if you have a positive ANA demonstrating autoimmune issues - and vice versa if your ANA is negative will that render 4 out of 5 assays negative?

FWIW DS12 complains of joint pain and popping during PANS flares. And Dr. T has seen association with PANDAS/PANS (assuming lyme too) with Ehlers Danlos syndrome which by definition results in unstable joints. But I would also assume that chronic inflammation resulting from Lyme infection would cause problems with connective tissues too- and of course healing in general.