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Antibiotics for OCD


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#16 skipping_oz

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Posted 11 October 2011 - 03:13 AM

Thank you for posting the links to NAC and biofilm above Nancy. We finally found a doctor a few weeks ago and NAC is one of the things my son now takes. After reading the http://www.ncbi.nlm....cles/PMC169071/ one I think the doc we are seeing is REALLY smart and REALLY has a handle on things. Thank you so much for continuing to share ... :D


#17 dcmom

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Posted 11 October 2011 - 03:39 AM

To Tmom's question:

My kids were initially triggered by strep (pandas). Their symptoms are ocd. They were put in remission by antibiotics after this initial episode.

Since, they react to lots of illnesses, immune challenges, etc. We have a pretty clear pattern of exacerbation and remission (with treatment), however with a baseline that has been creeping up a bit.

Both had PEX for non- strep triggers- one post T&A episode and lots of strep exposure, where we couldn't keep things calm. And one post H1N1, and then a cold/virus. For both girls the results from the PEX were dramatic, immediate, and thorough.

So- in our experience, immune modulation is necessary, no matter what the trigger (if you are pandas). We have also used oral and IV steroids, which have reversed an episode, although not as quickly or completely as PEX (this is where we see the baseline creeping up).

So now a glutamate question- about which I know nothing- with this pattern of exacerbation and remission mostly traced to illness- would glutamate still be a player? Does illness affect glutamate? is the blood brain barrier a key in glutamate issues causing neuro issues?

Thanks!

#18 jag10

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Posted 11 October 2011 - 05:03 AM

DCmom,

?...what is the difference for the child regarding oral steroids vs IV steroids? Are IV steroids more effective or are there less side effects when administered via IV?

We've loved steroids to stop a backslide in its tracks after illness and have never done more than a week, but with preteen girls I worry about the side effects.

Thanks-Jill

#19 momwithocdson

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Posted 11 October 2011 - 06:46 AM

So now a glutamate question- about which I know nothing- with this pattern of exacerbation and remission mostly traced to illness- would glutamate still be a player? Does illness affect glutamate? is the blood brain barrier a key in glutamate issues causing neuro issues?

Thanks!


I've never seen references to the BBB and glutamate in the same breath, so if there's a causal connection there, it would seem to be indirect.

As for illness triggering OCD behaviors and whether or not glutamate is a player in any of that, I don't know, and I haven't seen anything yet that draws a direct line from Point A to Point B. But, again, Swedo has noted a swelling of the caudate nucleus in PANDAS kids, and Rosenberg at Wayne State (I think I've mangled his name in some previous posts, but just confirmed it) shows excess glutamate in the caudate nucleus of kids with OCD (the genesis of the OCD was not identified in his studies, so whether those instances of OCD were infection-triggered is unknown, at least by the literature). Now, maybe that's just an odd coincidence. Or maybe the inflammation that comes with illness effects (overstimulates) the NMDA receptors, which are largely responsible for glutamate exotoxicity in the brain. It's also interesting to note that the "conventional wisdom" regarding "regular OCD" will also note that obsessions and compulsions can increase during periods of illness. Sounds an awful lot like an auto-immune response to me! <_<

Then you have USF using d-cycloserine, an antibiotic identified as an NMDA agonist, in conjunction with ERP for kids with OCD; and you have Sammy Maloney, WorriedDad's son and my kid, plus a number of others (sorry, I can't keep everyone straight) with PANDAS having a good bit of success with long-term Augmentin XR, a beta-lactam antibiotic also identified as glutamate modulator. The coincidences, I feel, are too many to be ignored.

The literature notes that "brain trauma," ischemia and hypoglycemia can contribute to excess glutamate gathering around neurons in the brain. Wouldn't an infection breaching the blood brain barrier and attacking the basal ganglia meet critera for "brain trauma"?

In the end, because OCD behaviors born of PANDAS and born (supposedly) of something other than infection are nearly indistinguishable (once you remove various PANDAS comorbid symptom sets, like separation anxiety, ADHD, tics), and both respond to CBT/ERP; many also respond to some level of SSRI and/or glutamate-modulatory therapy. So it just makes sense to me that the "intermediary" between the trigger and the behavior must have some point of commonality. The brain that responds with OCD behaviors is just responding to the information it's being given; it cannot discriminate between triggers, so it doesn't know if it's PANDAS or non-PANDAS. There's something being "interrupted" or "misaligned" in the chemistry in both cases.

Or maybe that's just me . . . . . :P Just thinking aloud, here.

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#20 dcmom

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Posted 11 October 2011 - 08:11 AM

Nancy-

very interesting. So- since I am still a bit of a dummy with the whole glutamate thing.... who cares if it is the chicken or the egg, right- lets just treat it. So what do we have for glutamate modulation, that we can use sporadically (as in during an exacerbation)? NAC- have it in the closet, haven't tried it- haven't had the patience (during an episode) for the whole ramping up time. I know there are some more heavy hitters- can they be used temporarily, as a band aid- and I assume this wouldn't get to the root of the issue, so we may still need to do immunomodulation?

JAG10-

well- here is how it happened that we got onto steroids by IV: we have done oral steroid bursts which have had two results: sometimes great and long lasting, other times not enough. When my girls both had an episode this past Dec/ Jan, it literally started about 5 days before Christmas:( It was (for the older one) overnight, and bad. We could not get into our usual pandas doc quick enough- and I cannot sit around in with them in an episode- I get frantic (in a good way, I think). So I emailed every local doc I could thing of, called a bunch of hospitals, used every contact possible to find help. I wanted PEX, because it had worked before. A local neuro emailed me back and told me to bring her in the next day, he works at a clinic in a very poor area, but he squeezed her in. Frankly, I don't know that he is/was a pandas believer, because he said stuff like "well, we can call this pandas. etc"- but he was willing to help. He wanted to rule out a few things, so he did an MRI and VEEG (normal). He said he would consider pex- but that it was risky- and he prefers to work in a methodical way from least risky to most risky. He felt this was IV steroids (we were on an oral burst- that wasn't helping), IVIG, PEX, in that order.

I had spoken at length to a pandas mom (child is now grown), who had tried many things, and she told me the best treatment they had done was very high dose IV steroids.

I was thrilled to try the IV steroids at the suggestion of this doc. (risk- yes, possible side effects- yes, BUT no blood product and no central line).


Oh- and one more thing. In our experience, Pandas comes on overnight, but then continues to spiral down and add symptoms for the following weeks. PEX and IVIG take a little time to get organized (if you can get them)- IV steroids can be done immediately. My theory is that the sooner you jump on the episode- the less healing you need- stop the symptoms before they appear.

So- this is a lot of theory- because last year was anything but smooth- but this is our game plan now- we will see how it works.
So we did it in the hospital for both girls. 7 mg/ kg per dose X 4 doses of solumedrol.

I really like the iv steroids- I haven't really found a doc that wants to delve into the difference in risks with steroids oral vs iv- but- EVERYTHING I read about risks of steroid usage is relating to long term usage- not necessarily dosing. So- we have done 30 days of steroids before- this is 2 days. It is in and out. It is a higher dose- which I think is what really knocks down the inflammation. My kids had no apparent side effects.

In april, they both had strep. Both went into exacerbation. Both had iv steroids again, this time at home.

I will say, it is not as quick and as thorough of a fix as pex was- but it has basically taken a kid that was spiraling downhill and reversed them into a healing trend. After the steroids, it took a bit longer to see that 90-100%- for us pex was immediate. But- steroids are cheap, covered by insurance, can be done at home, not traumatic, and while there is some risk, sure, I think the risk is smaller. Now- how often can we do this? I don't know. But, I think once or twice a year is reasonable.

Edited by dcmom, 11 October 2011 - 08:14 AM.


#21 jag10

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Posted 11 October 2011 - 08:30 AM

Do you know how this doc came up with the IV steroid protocol your dd received?

How long after the IV steroid treatment do your girls remain on full dose abx?

What are the risks for IV steroids?

Thanks!

#22 eljomom

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Posted 11 October 2011 - 08:58 AM

skipping_oz....can you share who you are seeing?

Thank you for posting the links to NAC and biofilm above Nancy. We finally found a doctor a few weeks ago and NAC is one of the things my son now takes. After reading the http://www.ncbi.nlm....cles/PMC169071/ one I think the doc we are seeing is REALLY smart and REALLY has a handle on things. Thank you so much for continuing to share ... :D



#23 cab40

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Posted 11 October 2011 - 10:47 AM

Hello,

Int on NAC...

Edited by cab40, 23 March 2012 - 11:49 AM.


#24 cab40

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Posted 11 October 2011 - 10:57 AM

Hi one other thing very impt, we desp also need good PANDAS doc in area we can access regularly. Have no direction only shooting into the dark.Literally. :-(

Skipping_OZ, how did you find a good doc? What type of doc do you see for your child?

C

Edited by cab40, 11 October 2011 - 10:58 AM.


#25 momwithocdson

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Posted 11 October 2011 - 11:27 AM

Nancy-

very interesting. So- since I am still a bit of a dummy with the whole glutamate thing.... who cares if it is the chicken or the egg, right- lets just treat it. So what do we have for glutamate modulation, that we can use sporadically (as in during an exacerbation)? NAC- have it in the closet, haven't tried it- haven't had the patience (during an episode) for the whole ramping up time. I know there are some more heavy hitters- can they be used temporarily, as a band aid- and I assume this wouldn't get to the root of the issue, so we may still need to do immunomodulation?


Yes, I would think that immunomodulation would still be something to pursue in persons for whom illness/infection is clearly a "trigger." I mean, if the immune system remains out of whack, all the other interventions will not sustain one, I wouldn't think.

Unfortunately, I don't know about using any of the "heavy hitters" on a sporadic basis; the only adjunct we're currently using is lamictal, and I've been told that the impacts of this also have to "build up" over time, though I will say we definitely saw positive impacts within a few days . . . much quicker than NAC, at any rate. I don't know about things like riluzole or memantine (Namenda); perhaps Melanie will weigh in since I know Danny has tried the Namenda. We chose lamictal because, at lower doses, its side effect profile is pretty benign.

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#26 momwithocdson

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Posted 11 October 2011 - 11:51 AM

NAC 600 mg AM (but can't spilt d/t capsule form)(thanks, Nancy for the tip; got your brand...but wondering also if that is churning up things?)


Possibly! Did you catch the previous exchanges in this thread? NAC may work against biofilms, so if your son has some infectious material that's been protected by a biofilm that's now being exposed as the NAC destroys the biofilm, then I suppose things could get a bit worse before it gets better.

He has PDD with PANDAS. Right posterior temporal lobe slowness on EEG, both asleep and awake, recent MRI brain reportedly "normal."


We were told by two professionals (one psychologist, one psychiatrist) that our son had PDD, also. Guess what . . . turns out he doesn't. Turns out his brain was just so scrambled by the PANDAS and the extreme OCD that he behaved like a kid with PDD. We never had an EEG, though, so I can't speak to that; I don't know if all the chemical stuff (CamK, glutamate, etc.) that goes on with PANDAS could cause the "slowness" that appears on the EEG. What I do know is that, outside of exacerbation and the profound OCD behaviors it engenders in our son, no one with eyes in their head would even begin to think he had PDD, let alone diagnose him as such. But in the depths of exacerbation, he fits that description all too well. :(

Just a thought . . . has your doctor/have you ever considered lamictal instead of the trileptal? Lamictal, or lamigotrine, is also an anticonvulsant and mood stabilizer like trileptal, but its activation is different. Lamictal is thought to help modulate brain glutamate, also. Our psych had said it was a good mood stabilizer for PDD symptomology, and it has done some very good things for our DS, even at a low dose. Did you see any behavioral benefits when your DS began the trileptal?

I'm so sorry you're still struggling so mightily to find the proper caregivers! I wish I could be more positive when it comes to insurance plan providers/psychologists, but we haven't had much luck with those, either. In the end, we were fortunate to be able to go out of network and then file for the out-of-network piece that our health plan is willing to cover. That being said, even though it may be a needle in a haystack, I wouldn't give up until you've dialed every last number in that list! In our last search for a new psychiatrist, I took a list of geographically desirable doctors, and I called 'em all. I had a list of issues I wanted to present to them upfront, before any of us wasted time with an actual office visit only to discover that this doctor didn't have adequate experience treating OCD, or that doctor hadn't kept up on the latest research coming out of NIMH, Yale, etc., or that one didn't have any other adolescents under his care, yada, yada. Use the phone and weed out the "no ways" and you'll eventually get down to a list of "could be okays" and "this is the one/ones I'd prefer." Then schedule your appointment(s) accordingly.

Hang in there, Chris!

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#27 cab40

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Posted 11 October 2011 - 12:33 PM

thanks for this below!

NAC may work against biofilms, so if your son has some infectious material that's been protected by a biofilm that's now being exposed as the NAC destroys the biofilm, then I suppose things could get a bit worse before it gets better.

Edited by cab40, 23 March 2012 - 11:51 AM.


#28 cab40

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Posted 11 October 2011 - 12:50 PM

thank you!

Edited by cab40, 23 March 2012 - 11:51 AM.


#29 momwithocdson

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Posted 11 October 2011 - 02:17 PM

Did/does your DS have/had dev delays, friends? My DS is very immature, acts like a 5 yr old, no boundaries, does not have real social skills...have him in social skills group finally something right now.


To some extent, yes. Especially socially. The PDD-type symptoms he displayed during exacerbation that caught the psychiatrist's eye included inability to hold a conversation, indirect gaze, lack of focus, perseveration on something obtuse/unimportant that nevertheless took full focus for him, cognitive inflexibility when it came to accepting someone else's point of view . . . stuff like that. Once he began to improve healthwise, though, 90% of that has dissipated. He still has some lingering "social immaturity," likely because he spent so many years buried in his head by OCD, etc., so he has some catching up to do with respect to his peer group. That is improving, also, but we have him in a social skills group at school, also.

My ds has executive functioning, anxiety, sensory integration, a whole host of things that are confusing and very scary.


LOTS of sensory stuff on our end, too, along with general anxiety. We actually had him evaluated for sensory integration disorder (SID) when he was around 7, and that came back with some stuff on the spectrum, though none of it was severe. He remains pretty picky about clothes, and in exacerbation (not sure what this is about . . . clogged ears due to fluid or allergies?), he talks incredibly loudly, with no awareness whatsoever that he's doing it. DH and I have to keep telling him to "Pipe down! We're right here!" ;) As for executive functioning problems, honestly, I think that's part and parcel of most PANDAS kids, especially when anxiety is high. The anxiety just consumes all of those neural resources and makes it difficult for the kids to organize their thoughts, let alone their stuff! Again, as he's gotten healthier, my DS's executive functioning has improved dramatically. For example, in exacerbation, he almost cannot speak without stuttering, repeating words and phrases over and over, trying to organize the thought properly and get it out of his mouth. We see none of that when he's healthy. Organizational skills in an external sense, meanwhile, as in homework assignments, etc., I think is something that has to be focused upon as health improves; I don't know if my DS is missing that capability inherently because he missed that developmental milestone while he was dealing with PANDAS, or if it would pose a challenge for him even without the PANDAS or OCD. But I know it doesn't come naturally to him, so we have to teach it, coach it and constantly reinforce it.

other things: Did you ever use IVIG? I don't think we can acccess that ($$$, ins) just wondering.


No, no IVIG in our case. DS doesn't have any immune deficiencies so insurance is unlikely to cover it, and we've been getting results without it. So, we have it in reserve in the event anything should spiral uncontrollably downward again. But, for the time being, we don't feel it's an answer for us.

Did you ds have any abnormalities with CBC/DIFF or immune markers? My ds has been having higher lymphocyte counts lowering neutrophils; high CD3 and CD 4, low NK cells, and again, no one to help us figure out what to do.....


No issues on our end with immune markers, lympochytes, etc. Can you get to an immunologist who could shed some light on this stuff for you?

AS for XR, so confused. My ds was on esentially 1200 mg (divided into two doses) of the liquid Augmentin (generic), so I'm not sure if the 1000 mg XR would harm him; at the same time do not know if the formulation, way XR is released makes it somethign to be concerned about for child (they say adult dose is for 90 lbs and up, but I think that's for 2000 mg total, jsut trying to rememebr...)


The adult dose of XR is actually 4,000 mg./day, 2,000 mg. twice daily, for things like sinus infections, etc. Still, if none of your caregivers can be convinced that your DS can handle a dose at half that (2,000 mg./day, 1,000 mg. twice daily), and you cannot travel to one of the PANDAS docs familiar with that protocol, then it would seem there's nothing to be gained by fixating on that. One last suggestion (if I haven't made it before), if it is within your means, would be to try and get a telephone consult with Dr. T. I know he is familiar with antibiotic regimens for treating PANDAS, and he also works telephonically with local doctors/peds, if they're willing. In the end, that might be well worth the investment.

As for C DIFF and other "bad yeast" issues emanating from antibiotic usage, there are both OTC and prescription ways of dealing with that. I know several families here have used meds like diflucan to combat antibiotic-induced yeast overgrowth, and most of us are implementing consistent probiotics for our kids to protect their gut flora. I don't think that's an insurmountable issues.

Once again, I'm sending good thoughts your way and hoping that you're able to find that needle in a haystack in your area who will help you work your way through all this. It's tough, but you can do it!

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#30 philamom

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Posted 11 October 2011 - 02:39 PM

Hello,

Nancy - a special "hi,"

Still looking ot see if anyone (I've posted on FB PANDAS sites "Parents of kids with PANDAS" and "Saving Sammy") Wondering if anyone has used Augmentin XR with a younger child, my DS 8 is 65 lbs; may try 1 - 1000 mg tab per day for two weeks; but gun-shy d/t lack of study on younger kids and I do not want to harm him further (worried about C Diff in particular, then yeast). Tried Augmentin liquid (ES, 600 mg/5mL - 5 cc BID) for a year, gains for a coupe of months with some behaviors, but nothign like what we see now....then nada. DS having more and more debiltating OCD symptoms: changing clothes, picking at skin, perservating on small scratches etc etc and lots of oppositional behavior. He is miseable and we don't have a cousnelor as of two months ago (lst one flipped out on us with ins issues, actually this was number 2 and she is not an OCD expert anyway) - we also desp. need a qualified OCD/anxiety therpaist in the Phoenix, AZ area but unf funds are almost non-exsisstent, so we need one covered under BCBS PPO of AZ. That site does NOT list providers by what they treat, only "psychologist, child" etc). Any advice coments direction appreciated on both issues.

Son on 2 mg tenex, 1 mg AM 1 mg PM (not sure it is doing anything); 225 mg trileptal d/t EEG findings BID for total of 450 mg dauly; NAC 600 mg AM (but can't spilt d/t capsule form)(thanks, Nancy for the tip; got your brand...but wondering also if that is churning up things?) Had him on 400 mg NAC that had some other ingredients for about two months prior, had ALA in it if that makes any difference, choose to go w/ Nancy's expertise on the NAC, first week on pure form no other ingredients).

Also on Quercitin BID; Vitamin D3/CA/MG/Zinc combo (split one tab, starting slow, give 1/2 AM 1/2 PM, has D3, Ca, MG , Zinc Nature's Bounty Brand) also small amt CoQ10 (30 mg AM) and multivitamin/multimineral in AM.

He has PDD with PANDAS. Right posterior temporal lobe slowness on EEG, both asleep and awake, recent MRI brain reportedly "normal." Right now since July 31 downgraded ABX of liquid Augmentin ES to PEN VK 250 mg BID just b/c he was making no gains on TX dose of the liquid AUGMENTIN for so long. Also wondering if AUG XR may have diff properties or just wishful thinking cause I don't know what else to do until we can get him a new therpaist...I do know AUG XR has lower doese of Clav Acid than immediate release per same amt of amoxicillin so that's whay I choose it or rather asked for it; again d/t clav acid being what can cause the C DIFF and/or YEAST to be MORE of a potential issue. (I actually got C DIFF from regular augmentin - very bad.) Thank u!!

Very very worried mom,

Chris

Sorry - I just skimmed the posts, but have you tried zithromax? I was told there is less of a chance of c-diff compared to Augmentin. My 10 yr old had c-diff twice at the age of 5 and again at age 9. We give 250+ billion cfu probiotics daily (3-4 different brands). She hasn't had any issues since increasing the probiotics.

Dd 13
Chronic Sinusitis since 18mths of age. Symptoms emerged with sinus infections and into remission with abx.
Severe Episode in March 2006. Dx with PANDAS May 2006. Three other episodes between 2007-2009.
2009- symptoms became chronic.
2010- dx with lyme, bartonella, rmsf. Positive Igenex Lyme. Positive Quest Bartonella and RMSF (igg).
2011- lupus flair, erythema nodosum, Pots, Positive Advanced Lab Culture w/ pic of spirochetes in sample. Positive Igenex

2012- endoscopy & colonoscopy

2013- Still positive for Lyme w/Igenex.. Positive Bartonella w/Quest

2014- Positive Advanced Lab borrelia culture, Positive Igenex, lupus flair, hypothyroidism

 

Treatment: abx & ivig





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