911RN

bismuth gel 1 tsp (I can't find this) Bismuth is the main ingredient in Pepto Bismol. That's what Inernist I used to work for recommended for positive H.Pylori along with the usual 2 antibiotic cocktail. Just FYI- Bismuth causes stools to turn ark green to black. They are not bleeding- it's color change from the bismuth.

Absolutely....I have an entire computer folder full of research on the connection between Strep and narcolepsy. However, when DS11 sleep study came back I had to stop going down that rabbit hole Although, he did fall asleep during daytime portion of sleep study- the brain waves were not indicative of narcolepsy which I guess are different than other sleep waves. I'm not sleep study expert- have alpha,beta, delta and some other type waves. One is more indicative of narcolepsy- don't remember, now, which one- but whatever IT is- he didn't have it so I stopped researching narcolepsy and went back to just PANDAS and ACN forum!

Document everything! Make sure you take some pictures of the rash - incuding dates. You never know when the pictures will come in handy. Great idea- I thought about that. Taking pictures when it is more prominent and not. Think I will do that! Thanks for suggestion.

My son has great fatigue although not hypersomnia. He has had periodic episodes of falling asleep at mid day, in the past, in school or out of school. Fall 2010 was really bad. Fall asleep sitting up or at his desk and would have to be awakened. Teachers usually let him go for about 30 minutes then woke him up. He was better afterwards. This was in conjunction with PANDAS flare following Strep. Some of this we attributed to Intuniv which we later stopped. However, he still fatigues easily and has not been on Intuniv for 7 months! He had fatigue/falling asleep before Intuniv also. He has had an overnight sleep study that was normal. Docs don't have good explanation for why a 11 year old child is so fatigued. Neuro said on last visit that he just does not receive "resorative sleep" which was a bunch of BS for "I don't know." I would have had greater respect if he had just said I don't know He sleeps about 10 hours per night. He is better right now---tics have diminished for most part, OCD is minimal, still fatigues without mid day nappping....we have never had any of the hypersexuality- thankfully. He complains about being "tired" all the time. Sorry, that is not a normal 11 year old boy complaint in my view. Kids are born with energy not fatigue.

Thanks- that gives me a good starting point. Our hospital uses 'traditional' Quest lab. I'll have to check into it.

Hello All, Have a question regarding my 14 year old neurotypical, healthy son. No issues or illnesses BUT he has stretch mark type rashes suspicious for Bartonella rashes. They come and go- sometimes more prominent and purple then fade away. Has them on the backs of his arms and some on his flanks/hips. Seems to follow like life cycle of TBI?? He is not overweight. He has grown like a fool the past 2-3 years so they could be stretch marks(?) but I have been watching them and it seems to be more than just stretch marks due to changes in color and the more and less prominence over time intermittently. Is there a reliable titer for Bartonella? From what I have read it is all a bit iffy??? I'm just planning on taking him to Peds for eval- not going to delve into LLMD at this point in child that is healthy without symptoms although it is concerning. This is my outdoorsy kid- he has pulled off multiple ticks over the years. We are not in high Lyme area but that is no consolation for Bartonella. What have the Lyme forum gurus have to offer on this?? Thanks, in advance, for any replies!

Thanks 911RN. This all makes sense and rings true to our personal, medical-consumer-only experience, though I've never heard of a case of MRSA in our area, let alone seen it or known anyone who developed it. So I had no idea that it was actually increasing, as opposed to that being just another case of fear-mongering from the conservative medical community. I hope and think you're right: that the future of treatment of "mental" illness is on the precipice of major change. I'm sure there are ramifications, such as the potential shortages you ponder, but at some point, you've got to believe that at least future generations, if not this one, will embrace that basic premise that it is better to treat the underlying cause(s) rather than merely medicate the symptoms! Perhaps the likes of Eli Lilly, Merck, Searle, Abbott, etc. could switch focus from SSRIs and anti-psychotics and develop narrow spectrum abx that help treat these conditions and/or even synthetic IVIG materials. Every obstacle can be parlayed into an opportunity! I'm glad, hope and pray MRSA is not a-coming attraction to your locale. It started out about 10 years ago here with everyone saying they had "spider bites" that were infected. We inherently treated wrongly with Cephaolosporins (in the beginning) thinking it was brown recluse spider bites...as time went on and cultures were done of more advanced abscesses- it was discovered to be Methcillin Resistant Staph Aureus abscesses. We have treated in our ER as young as 3 months and as old as 80. Again, small population of 30,000! They are painful, red, swollen skin abscesses-often spontaneoulsy open and drain and often get necrotic (black) centers to them. Typically, the only PO antibiotics that are effective is Bactrim and Clindamycin. Some have developed Clinda resistance, as well. Folks often have reccurrent infections. Can be as small as a quarter or a big as your hand. We lance,culture, pack and treat. Once lanced and drained- will often get better with no treatment- as is the case with most abscesses with folks that have decent immune system. The pain is what makes folks seek treament. The brain is one the last, final frontiers of medicine- most other body systems are fairly well understood. Autoimmunity is right up there with the brain. Both are very complex and complicated. I, too, believe we will see progress with many once labled psychiatric or developmental conditions in our lifetime. There is lots of opportunity. I concur with you- treat the underlying root cause, not just cover/mask the symptoms with pharmaceuticals. Remember, medicine once "blood letted" people and killed them due to hypovolemia and anemia and thought it was a great idea. THAT was once a good standard treatment for lots of illnesses? WHAT???? As the Va Slims cig commericials used to say....we have come a long way, baby! Still have a long way to go for so called "mental illness" which, has been utterly broken system and approach for this country for many years. There is lots of research going on within many illnesses....it will come. Just takes time. An educated, demanding consumer public is driving it- many on the parents of this board can take credit as pioneers for change.

Same thing happened to me?? I could not hear it either.I tried to reply- can only use facebook. Don't have it, don't want it. The article stated they are suffering from ticks NOT tics. C'mon people- if you can't even proofread and edit responsibly enough to get THAT right- how can you expect educated people to take the rest of what you have to say seriously?

I have been a RN for 24 years. You are on the right track in my view. Antibiotic resistance IS a serious concern and I don't minimize the implications to the general health of USA. We see at least 1-3 cases of MRSA per day in a community of 30,000 people! Which is the result of drug resistant Staph Aureus. This has been in the last 10 years. I had NEVER seen a MRSA abscess 15 years ago in medicine in hospitals, Nursing home or Home Heath. This is a NEW condition/phenomena as a result of poorly used and wrongly used antibiotics. It is now a common, every day, community acquired infection just like Strep or Pneumonia. All that being said, it only takes seeing one patient with Rheumatic Fever to make you realize what not getting an antibiotic can do. I'm not completely convinced it is all antibiotic related because the jury is still out if long term antibiotics ARE really the end all be all for PANDAS. I think part of it is just acknowledging PANDAS is not so controversial anyway and if the medical establishmet has to say it is real....they have no standards of care how to treat it. One must realize that on several psychiatric fronts- Bipolar, Schizophrenia, OCD there is research that all of these conditions may be medically driven with common roots to viral and/or bacterial causes. Or, autoimmune. This will take the medical community by storm if it comes to pass that all these conditions can be treated with meds other that what has typically been prescribed. Antipsychotics, SSRI's will be replaced by an entire new model of medicine by an Internist/PCP/Peds! Psychiatry will become a lost profession. Internists don't want to deal with "crazy" people- this has the potential to shake medicine at it's core that it has been wrong regarding pscyh conditions for decades. I think this goes much deeper than just antibiotic resistance issues. This is a whole new paradigm for the medical establishment...not just Pandora's Box .... more Pandora's mansion. This would be entire new mindset for medicine. It's too scary and "unreal" for them to even fatham this new paradigm could be the future of medicine. They are woefully unprepared for that potential reality right now. Just think (and I am not saying this is in anyway TRUE) if IVIG became the gold standard for an illness like Bipolar- how would the supply hold up, how would insurances pay for it, how would doctors deal with the numbers of Bipolar demanding it? How could they deal with this being changed from psych to medical dx? This is just not PANDAS they are concerned about- it is the enitre psych community. These are BIG FISH to fry. The implications could be Gi-normus. PANDAS is small potatoes- all the rest of the psych and developmental conditions that could have similar root pathology is not! That's my theory...FWIW.

The obvious question from the follow up interview- the girl that is getting better that is "under treatment"- WHAT IS SHE BEING TREATED WITH???? They are being very evasive about the specific treatment in all these interviews (even the girl in the video). They are not telling anyone because folks may be able to put the pieces together, perhaps?? Just my thoughts....whether it is PANDAS, SC or vaccine related. Could be all are related?? They are being tight lipped with the treatment. My guess is if it vaccine related- they have been offered monetary reward not to give treatment or else risk not be able to recoup from vaccine damage fund. These parents that are dissatisfied would be speaking to the "treatment" if not. Something is making them not say what the treatment is?? Willing to do an interview but not say what treatment is- sounds fishy to me. Like Phily PA- I don't want to speculate but I smell a rat in this whole deal.

Just like Goldilocks and the Three bears. This one was too hot, this one was too cold, this one was just right! This one was too hard, this one was too soft and this one was just right. Geez, I need to go to bed! I have read Dr Cunningham's papers ad nauseum and yes, you are right- high Cam Kinase II is indicative of PANS, super duper high can mean SC. Not sure what to think of the paper. Too low- neurotoxicity. Too high- psycho/motor toxicity?? Not sure I can tell the difference. But it did have a sentence or two on glutamate for you to sink your teeth into, Nancy:) In full disclosure- our testing was never completed- program shut down although specimen was sent to lab in OK.

Here is link- I found it on CBN website: It was 2009- wonder I can remember anything about it AT ALL. It said Ribose- not Riboflavin so I may be wrong on all this...don't think they are the same?? Awesome Foursome...Fantastic 4. Tomato, tomata. Carnitine was the 4th supplement. http://www.cbn.com/cbnnews/healthscience/2009/June/The-Awesome-Foursome-Nutrients-for-Health/

Deleted- see below. Double post

My DS11 has been on Prozac 20 mg (low dose) since June 2011. He weighs 120 lbs. He has tolerated it well and it has helped with OCD. I, like Nancy, went up very slowly with 4-6 week intervals in between 10-20 mg. I am a big believer in "trial and learn" when all other therapies have been exhausted. We did long term daily high dose Azithro for 90 days then effects waned. I was not willing to do long term antibotics once we could not get Cam Kinase II levels from Cunningham lab when they closed research program. We had blood waiting in lab that went untested. It has been a positive experience for us- no negatives to report:) Good luck!

Yes, both my children have had this in the past. My older son is non Pandas but since he has been through puberty- I don't notice it anymore. My suspected PANDAS child gets red/hot ears for no particular reason. Fever or not fever. Well or sick. I've never been able to figure it out either??? I think it is more related to when he is excited or upset. It has lessened substantially since he is getting older- 11.5. Perhaps, he too, is "outgrowing" it with being prepubescent. IDK.

Short answer- yes. Specialist usually write "consult note" to Peds after each visit with child. This usually happens even if Peds was not referring MD. Peds/PCP is considered captain of the ship- all info funnels to them from specialists. This is due to fact that often specialists drop in/ drop out from child's care but the Peds does not. Example- go to ENT for referral- have T&A- have a post op visit and ENT does not need to see child anymore unless there are further issues requiring his/her expertise. They tell you to come back as needed but schedule no further appts. Peds has that note and MD's disposition at their disposal. If a child has a chronic problem requiring regular visit with Neuro, Nephro, Allergy etc- the specialists communicate so that Peds in "in the loop" about what specialists are following. Example- my son is on Antiseizure meds- followed by Neuro. Peds is not responsible for Rxs and changes in meds but he needs to know what Neuro's assessments and opinions are regarding his tolerance of medication and continued use. Typically, specialists focus on their specialty and Peds is supposed to be looking at the whole being. Last visit to my Neuro- my son had Impetigo- I had been treating with Bactroban for weeks. I had been "chasing" lesions as they popped up. Neuro even volunteered he might need oral antibiotics to treat it systemically just to stop it all at once. Neuro can certainly treat Impetigo and could have written a Rx for oral antibiotic but he told me to follow up with Peds. Why, I suspect because it is not his specialty area and he didn't want to be bothered or overstep his bounds of responsisbility on why he is seeing my son. Sounds crazy, but that is how some docs think.I ended up clearing infection with Bactroban, alone, but I thought this was a good example of how the docs separate their responsibilities. They don't need "permission" to write a consult note to primary doc- this is how the system is set up for contiunity of care and communiction between docs. If they have seen your child and are involved in their care- that is inherent in the consent agreement for treatment- you likely signed something to that effect when they have you sign the HIPPA notification. HTH!

Amen, sister! Publish or perish. Get on the train or get left behind (as a naysayer!) NOW, you have said it in a nutshell- this is how it works in the medical, ole' boy network and double that for researchers! Still much work to be done....tomato, tamata....still don't care what they call it. Until they come up with concensus opinion of "standard of care" for diagnosis, testing and treatment we are all still operating in the dark, fighting at every angle, for progress.Thankfully, it is not as bad as it used to be with more press coverage but there is still too much lacking concensus opinion and in-fighting for it to be "accepted" and managed by mainstream docs. There is no doubt on how to diagnose, test and treat for Diabetes. There are too many varied, researched and lackluster opinions on how to treat PANS, CANS or PANDAS. He!!, they can't even decide what to call it. How ya gonna diagnosis, test and treat for IT when you don't even know waht to call IT????!!!

If your child's MYcoplasma IgM is elevated- it is not chronic I wouldn't think- it would be active. IgG elevated would lend itsef more to chronic or gone.I would say treat for an active infection so it does not go chronic or dormant. The theory behind PANDAS, from my understadning is not a resistant form of Strep- rather that antibodies that were formed to Strep crossed the blood brain barrier and set up housekeeping in the basa ganglia. The antibodies are what "react" with a recurrent Strep infection that cause the neuropsychiatric symptoms. Neuroinflammation- high Camkinase II- having a party in the basal ganglia whenever child gets exposed to Strep or other offending triggering bug.

I, too, have followed Dr Weil on his advice for Tumeric. I don't use it on my son but there's lots of research on the benefits as powerful antiinflammatory for MS. Works for MS- should work for other conditions???

What caught my eye was "treatment with the most appropriate therapy." Could SOMEONE please define THAT????!!!! Authorities with a consensus opinion. That, to me, is the real issue and reason mainstream docs don't want to treat or believe in PANDAS, PANS or CANS. Whatever they want to call it this week. There's no research driven decision tree and treatment protocols. Need an algorithm to diagnose and follow for teatment instead of worrying about what to call it! Just my 2 cents worth!

If you have elevated IgM- means he has active Mycoplasma infection, right? Most commonly associated with "walking pneumonia." Is your child sick?Anything indicative of infection- fever, elevated WBC etc? Why would antibiotics not be used to treat that- that is the usual treat for Pneumonia. Usually use Zithromax or a non Penicillin type antibiotic for this. I'm just not sure why IVIG would be the first choice for something typically treated with antibiotics??? If child is not sick- I think I would want to go to Infectious Disease doc with this type result for options. Just a thought.

Rapid streps are pretty sensitive but not fool proof (failures are due to poor collection method by person obtaining specimen, not test, in my opinion) so, if positive....our facility does not send the throat culture. Treat based on rapid result. We usually do both swabs at the same time. If rapid strep is negative then culture swab goes to micro for process as I stated. This is so we "catch" any positives out there that may have been missed by rapid. As I said, we usually just get the identification that it is Streptococcus with no sensitivity- docs order customary meds. Just as one would do with a rapid test:)Can ask for senstivity if we want it but it is usually so "boiler plate" with meds that docs expect to be sensitive that we have no need to do so. Only if patients keep coming back with recurrent Strep do we sometimes check for odd resistance. MORE OFTEN than not- med failure is due to folks not completing entire course of meds NOT the choice of meds. In those cases, we try to encourage Bicillin injections- 1 time deal- don't have to worry about noncompliance and takes care of it. Course, I am referring to normal community- not PANDAS population.

Any throat culture- not rapid strep test provides you with an identification of the organism then "sensitivity" which has corresponding numbers to the antibiotics that were tested in the petrie dish. Those numbers mean how sensitive the particular antibiotic is to killing the bacteria. They are either resistant- didn't kill any or sensitive with a corresponding number of just how sensitive it was at killing the colonies which gives doc the best guide on what antibiotic to choose. The microlab uses antibiotic impregnated discs that drop down onto bacteria laden petrie dish (that bacteria grows from the throat culture).They monitors for 1 to 3 days while counting each day how many colonies were killed by the particular abx disc or not killed, as is the case, if resistant. First, bacteria is identified then sensitivity is provided. The number assigned to the sensitivity of a particular antibiotic is based on those counts. What happens most of the time with Strep is some labs (not all) don't even provide the sensitivities specifically for Strep on reports unless you specifically call to ask for it because it is just so commonly known how to treat Strep. The only time I have rec'd sensitivities on + Strep throat cultures is if it a weird type of Strep that may have fallen outside the norm of how we usually treat it with the customary antibiotic choices. ALL other cultures we get specific sensitivities- just not Strep.Sounds crazy, I know... but that's how I have seen reports for 20+ years in nursing- the last 12 in the ER. I look at culture reports every day I work, as part of my job, as charge, in the ER. Hope that helps and answers your question. Throat swab should give you what you are seeking...I think?!

Deleted 2nd one- it double posted reply!