Back on Treatment Azith and Doing Better

[lsad765]

Dear seasoned parents --

 

I look to you for your opinions on what is going on medically with my DD6. She was diagnosed by Dr. T with pandas 2 months ago. She has been on Cefdnir, then Azith since then. She improved a little on the Cefdnir but more so on the Azith. Then she went to a prophylactic dose of Azith and after 5 days, started to backslide. Dr. T had us put her back up to a treatment dose and she improved within 24-48 hours. Why?

 

Is it because she has some kind of "occult" strep infection that hasn't yet cleared and that the Azith is still combating? Or is it because the Azith is acting as an anti-inflammatory? And how can I figure out which one it is? Would the quick turnaround back on treatment-dose Azith be indicative of one or the other? I will follow up with Dr. T but would love your input too.

 

For DD, she never had high strep titers, but there is a clear relationship between strep and OCD for her. Her acute onset of OCD 3 years ago came after strep, and her second exacerbation, which was worse, came after bad strep that wouldn't clear with the typical antibiotic treatment. Reviewing her medical records and my journals, I now see that every strep infection for her has been followed by worsening of OCD symptoms.

 

I see that there is some evidence that Azithromycin can have an anti-inflammatory effect. Since getting the pandas diagnoses, DD has had one strep infection (while on Cefdnir). The infection and her increased OCD symptoms that went along with it cleared very quickly with Azith. She then went back to a kind of "baseline" for her with regards to her OCD symptoms. This leads me to believe that perhaps her many past strep infections not only caused the OCD but inflamed the brain enough so that she has never gotten rid of the OCD completely. What do you think of this theory?

 

Regarding inflammation, I have used Motrin with her to pretty good effect. I also give her Arnica tablets a good bit, because she has a lot of "growing pains." Arnica is known to have anti-inflammatory properties. Her pandas symptoms seem to respond to the Arnica tablets a bit too, though it could be a placebo effect, since I talk up their efficacy to her alot My own mom gave me Arnica cream as a kid for bruises and muscle aches after long hours of playing soccer, so I knew something of it. The use of Arnica cream is totally non-controversial and has been used for many, many years. There is probably less medical evidence for the use of Arnica tablets, which are a homeopathic remedy containing trace amounts of Arnica. Arnica would be poisonous if ingested at anything less than trace amounts.

 

I should note that we are not looking into any other causes for our daughter (Lyme, etc.) right now. My DD has relatively mild OCD symptoms that are improving tremendously with the Azith and ERP. Back on the treatment Azith, and with continuing ERP, she is a good place right now. Of course, I want to figure out how best to manage her symptoms going forward and especially if we see another backslide.

 

What I really want to do is get her off the Azith as soon as possible. My thought is to give her another week or two of treatment dose Azith and then try to take her off it again, perhaps by weaning and using Motrin and/or Arnica as I wean. Since my daughter's case is mild and she has made such great progress with ERP, I am willing to try this again soon, but I want to give her body as much support as necessary to get her through the weaning. Any advice about how to proceed -- and if I should be considering using any other safe and proven anti-inflammatory with her -- would be most appreciated....

 

Many thanks, as always --

[Mayzoo]

Does she still have her tonsils? My kiddo had her tonsils out recently and we found they had been harboring bacteria. Every time she was doing well on treatment dose, when we started to wean off, she declined. Now we are going to treat to clear what infection is left, and I have instituted natural abx (Olive Leaf Ext, Propolis caps, and Coconut oil) to help cover her when we begin the wean process again.

 

It would be difficult to discern which angle the azith is treating. Last time you tried to wean, were you using Advil or the arnica? If not, when you wean this time try with the Advil and arnica and see what happens. That may add a piece to the puzzle.

[lsad765]

Hi Mayzoo! Thank you for your quick reply.

 

My DD still has her tonsils. I have not yet discussed this with Dr. T, but my ped says she doesn't need them out unless she has had strep 3x in a year for 3 years in a row or if she is getting sick enough to be out of school a lot. She is just shy of the first criteria and not close to the second. Her tonsils don't look bad either. They are not chronically red or swollen. Strep is definitely an issue for her vis-a-vis OCD symptoms, but it doesn't seem to be such a problem that it warrants getting her tonsils out at this point.

 

At the least, I should first try weaning her off the Azith while doing Motrin/Arnica first, as you suggest, which I did not try last time. I just kind of went cold turkey on her because she was doing so well. She went from 200 mg 2x a day to 200 mg 2x a week.

 

Btw, our ped is what I would consider a conservative but thoughtful guy. He was open to the pandas diagnosis and, as he says, believes in anything that works. He told me to try her off the antibiotics but definitely go back on if things got worse.

 

Mayzoo, what was your criteria for taking out tonsils? What made you decide to do it?

 

If anyone else has suggestions, please post and many thanks in advance!!

[SpenceOhana]

Newbie here too. Our daughter was diagnosed with PANS last month. She had negative strep but suffered from a sinus/respitory infection before sudden onset of OCD behaviors and compulsions. Our pediatric psychiatrist diagnosed her. Pediatrician isn't familiar with PANDAS but believes it happens as she has another patient diagnosed with it. She treating DD9 with zith because she did have a lingering cold. Her OCD subsided on day 2-3. But 5 days after treatment they returned. So I asked to do another round of zith, ped was reluctant but prescribed it. Once again her symptoms subsided day 2-3 on it. But here we are again, 5 days after the OCD returned. Psychiatrist is having us treat with Ibuprofen over the weekend until she gets in touch with more peds and psychiatrist that treat PANDAS, hearing from them what longer term antibiotic treatments they do. She's worried about DD developing a superbug to the zith. She strongly feels their is a lingering inflammation. Because each time we treated with zith we also gave ibuprofen. So testing only ibuprofen. Tonight is day 2 on it, symptoms seem a little better but definitely still present. We're also using behavioral techniques to help too. I noticed in your post you mentioned ERP? What does that stand for? I'm still new to all the abbreviations. Also I am going to ask her psychiatrist tomorrow about anatabloc (another mom on here mentioned it) it's a natural supplement anti-inflammatory. She said it helped so much more than Motrin for her DS.

[Mayzoo]

Hi Mayzoo! Thank you for your quick reply.

 

My DD still has her tonsils. I have not yet discussed this with Dr. T, but my ped says she doesn't need them out unless she has had strep 3x in a year for 3 years in a row or if she is getting sick enough to be out of school a lot. She is just shy of the first criteria and not close to the second. Her tonsils don't look bad either. They are not chronically red or swollen. Strep is definitely an issue for her vis-a-vis OCD symptoms, but it doesn't seem to be such a problem that it warrants getting her tonsils out at this point.

 

At the least, I should first try weaning her off the Azith while doing Motrin/Arnica first, as you suggest, which I did not try last time. I just kind of went cold turkey on her because she was doing so well. She went from 200 mg 2x a day to 200 mg 2x a week.

 

Btw, our ped is what I would consider a conservative but thoughtful guy. He was open to the pandas diagnosis and, as he says, believes in anything that works. He told me to try her off the antibiotics but definitely go back on if things got worse.

 

Mayzoo, what was your criteria for taking out tonsils? What made you decide to do it?

 

If anyone else has suggestions, please post and many thanks in advance!!

 

Kiddo was very healthy (or as I suspect now ill without symptoms) until 9-2011. A small part of her history looks like this:

 

01/05/12 Pedi

SX Went in for blood work, throat was red

DX Strep + rapid culture

TX Amox 500 bid x10d

 

01/15/12 Pedi

SX follow up retest strep

DX + rapid strep test

TX Augmenting 1050mg bid x10d

 

01/24/12 Pedi

SX Retest strep

DX + rapid strep test, PANDAS

TX Zithromax 250mg x 6 days

 

01/30/12 Pedi

SX Retest strep

DX + rapid strep test, PANDAS

TX Zithromax 250 mg x30 days

 

02/29/12 Pedi

SX Retest strep—Major improvement in SX

DX - rapid strep test

TX Zithromax 250 mg x30 days

 

07/05/13 Pedi

SX Some SX returning, nightmares, hollering, whispering

DX + rapid strep, PANDAS

TX Chg zithromax to Mino 50mg BID

 

 

 

She was strep +, but asymptomatic, for almost 60 straight days. This coupled with much of what I had read here made me feel in my gut that her Tonsils were harboring bacteria that began seeping out as soon as we stopped aggressive treatments. Every time we saw the pedi or the ENT they said her tonsils looked fine; however, upon removal, they told me the tonsils looked consistent with chronic infection. They were pitted and had "deep crypts full of debris and bacteria."

Edited March 17, 2013 by Mayzoo

[Mayzoo]

I should add that kiddos pupils were dilated 90 + % of the time and she had a low grade fever for about 6-8 months until we had her tonsils out. Now her pupils are dilated maybe 20% of the time, and her temp is regularly normal for the first time in a long time.

[lsad765]

Thank you so much for sharing the details about your daughter. Thankfully, my daughter has not had persistent strep. She actually amazingly only had one bout of strep this entire season! She was already on Cefdnir and it cleared after 5 days of Azith. I'm not sure if she had dilated pupils with the strep but she has none now and no fever now, low grade or otherwise. I really appreciate hearing about your daughter though and thank you for the advice to try weaning again, this time with Motrin/Arnica. I will definitely try it and see what happens. Thx again

[lsad765]

 

I noticed in your post you mentioned ERP? What does that stand for? I'm still new to all the abbreviations. Also I am going to ask her psychiatrist tomorrow about anatabloc (another mom on here mentioned it) it's a natural supplement anti-inflammatory. She said it helped so much more than Motrin for her DS.

 

ERP is the most effective therapy technique for OCD. It stands for Exposure and Response Prevention. It is a form of cognitive behavioral therapy that is proven to be very effective for OCD and it is 100% safe. Many people on this forum have used it to great effect with their children. You can search the archives and the Internet for more information about it, but basically the idea is that you slowly and carefully expose the person to the very thing that they are fearing (exposure) and then they must refrain from the compulsion ("response prevention"). It is very hard work, especially for a young child, so with children it is very important for the parent to be not just involved but actively participating in the entirety of the therapy.

 

Many people on this forum have worked with therapists trained in ERP and have seen great results with their children. However, they stress that it is important to find a therapist who is trained specifically in ERP and who is willing and able to start right in with the hard work of ERP with kids. Many people say that any kind of talk therapy with people/children with OCD is useless, and can even make matters worse, because it just dredges up and revisits the fears again for the child in question. The experts in this therapy say -- and I have learned this first-hand too -- that talking about OCD too much usually makes OCD worse.

 

There is an intense program that a number of people on this forum have visited at the University of South Florida. It is a 1-3 week intensive treatment program, led by Dr. Eric Storch. Families who have been there have posted rave reviews about the program. My DD's OCD thankfully is not so severe as to warrant participating in that program. However, on the advice of another mom on this forum, I called Dr. Storch for his opinion on my daughter's case and he very generously listened and provided advice to me about how to take on some very intensive ERP therapy with my daughter at home. I'm proud to say that my daughter took surprisingly willingly to the therapy, probably because it put her in control of her OCD and because she very quickly had some very positive experiences in "tricking her PANDAS," as we call it (she is 6) by doing the very opposite of "what her PANDAS tells her she should do." It has been really amazing to witness the progress she has made in a few short weeks.

 

As a guide, I first read "Talking Back to OCD," by John March. It is good to read as an overview, but there is too much information in the first half of the book about how to "talk back to OCD," which Dr. Storch thinks is a waste of time. Instead, he told me to jump to the second half of the book, which is about the exposures. And that is what I did.

 

For example, my daughter's worst OCD symptom, and the thing that started it all with her sudden onset, is excessive wiping after using the bathroom. Her OCD tells her still is still wet/dirty and she feels she must wipe endlessly to get dry/clean. No amount of reasoning with her could get her to stop. It was a real compulsion. Instead of trying to convince her that she shouldn't wipe so much, I simply told her that PANDAS was making her do that, that PANDAS was keeping her from having fun/watching TV/playing with her friends/whatever. And that she had to trick PANDAS by at first only wiping 5 times, then 4 times, then 3 times, etc. Until I had her using the toilet and then not wiping at all!!

 

The trick, according to Storch and others trained in ERP, is that you not only have the person face the fear without doing the compulsion, you then have them go BEYOND the fear and beyond their comfort zone to really show them that they can handle the discomfort/fear/anxiety that they obsess over.

 

Before I started working on this issue, I told my daughter that we would be working on her wiping and that eventually, she was going to pee and then not wipe at all and just leave it wet in her underwear. I talked about how awful it would feel and how much it would bother her but that she would just leave it there and that she would be fine and that I would be there with her to help her. I am not exaggerating when I say that her face went white as a sheet when I told her this.

 

But, lo and behold, after working on this slowly, diligently, and with lots of praise and cheerleading from me -- and with choice and timely rewards for working so hard at "getting rid of her PANDAS" -- I am proud to say that my daughter has done this many times now with no problem! As a result, she is now spending a mere few minutes in the bathroom pee-ing, where before each bathroom visit would drag on endlessly and she would emerge still uncomfortable and miserable! It has made a huge difference for all of her obsessions and, most important for her self-esteem and her general happiness!!

 

Good luck -- there's a lot to learn and it is a lot of work, but it is totally worth it!

[SpenceOhana]

 

I noticed in your post you mentioned ERP? What does that stand for? I'm still new to all the abbreviations. Also I am going to ask her psychiatrist tomorrow about anatabloc (another mom on here mentioned it) it's a natural supplement anti-inflammatory. She said it helped so much more than Motrin for her DS.

 

ERP is the most effective therapy technique for OCD. It stands for Exposure and Response Prevention. It is a form of cognitive behavioral therapy that is proven to be very effective for OCD and it is 100% safe. Many people on this forum have used it to great effect with their children. You can search the archives and the Internet for more information about it, but basically the idea is that you slowly and carefully expose the person to the very thing that they are fearing (exposure) and then they must refrain from the compulsion ("response prevention"). It is very hard work, especially for a young child, so with children it is very important for the parent to be not just involved but actively participating in the entirety of the therapy.

 

Many people on this forum have worked with therapists trained in ERP and have seen great results with their children. However, they stress that it is important to find a therapist who is trained specifically in ERP and who is willing and able to start right in with the hard work of ERP with kids. Many people say that any kind of talk therapy with people/children with OCD is useless, and can even make matters worse, because it just dredges up and revisits the fears again for the child in question. The experts in this therapy say -- and I have learned this first-hand too -- that talking about OCD too much usually makes OCD worse.

 

There is an intense program that a number of people on this forum have visited at the University of South Florida. It is a 1-3 week intensive treatment program, led by Dr. Eric Storch. Families who have been there have posted rave reviews about the program. My DD's OCD thankfully is not so severe as to warrant participating in that program. However, on the advice of another mom on this forum, I called Dr. Storch for his opinion on my daughter's case and he very generously listened and provided advice to me about how to take on some very intensive ERP therapy with my daughter at home. I'm proud to say that my daughter took surprisingly willingly to the therapy, probably because it put her in control of her OCD and because she very quickly had some very positive experiences in "tricking her PANDAS," as we call it (she is 6) by doing the very opposite of "what her PANDAS tells her she should do." It has been really amazing to witness the progress she has made in a few short weeks.

 

As a guide, I first read "Talking Back to OCD," by John March. It is good to read as an overview, but there is too much information in the first half of the book about how to "talk back to OCD," which Dr. Storch thinks is a waste of time. Instead, he told me to jump to the second half of the book, which is about the exposures. And that is what I did.

 

For example, my daughter's worst OCD symptom, and the thing that started it all with her sudden onset, is excessive wiping after using the bathroom. Her OCD tells her still is still wet/dirty and she feels she must wipe endlessly to get dry/clean. No amount of reasoning with her could get her to stop. It was a real compulsion. Instead of trying to convince her that she shouldn't wipe so much, I simply told her that PANDAS was making her do that, that PANDAS was keeping her from having fun/watching TV/playing with her friends/whatever. And that she had to trick PANDAS by at first only wiping 5 times, then 4 times, then 3 times, etc. Until I had her using the toilet and then not wiping at all!!

 

The trick, according to Storch and others trained in ERP, is that you not only have the person face the fear without doing the compulsion, you then have them go BEYOND the fear and beyond their comfort zone to really show them that they can handle the discomfort/fear/anxiety that they obsess over.

 

Before I started working on this issue, I told my daughter that we would be working on her wiping and that eventually, she was going to pee and then not wipe at all and just leave it wet in her underwear. I talked about how awful it would feel and how much it would bother her but that she would just leave it there and that she would be fine and that I would be there with her to help her. I am not exaggerating when I say that her face went white as a sheet when I told her this.

 

But, lo and behold, after working on this slowly, diligently, and with lots of praise and cheerleading from me -- and with choice and timely rewards for working so hard at "getting rid of her PANDAS" -- I am proud to say that my daughter has done this many times now with no problem! As a result, she is now spending a mere few minutes in the bathroom pee-ing, where before each bathroom visit would drag on endlessly and she would emerge still uncomfortable and miserable! It has made a huge difference for all of her obsessions and, most important for her self-esteem and her general happiness!!

 

Good luck -- there's a lot to learn and it is a lot of work, but it is totally worth it!

 

Thanks for your response! Her psychiatrist suggested I make another appointment tomorrow for her to come in for a session. She mentioned something about cpt psychotherapy, is this like ERP? Actually a lot of what you explained seems to be the tools and techniques being taught in the 2 books my daughter is reading that her psychiatrist suggest, "What to do when you worry too much" and "What to do when your brain gets stuck". Tonight we were just reading about the 3 tricks OCD does and how you can't give into their tricks. She's recognizing her thoughts and compulsions now, but still a bit fearful to say "no" to the OCD. Her 2 major thoughts/compulsions are germs & fear of contamination, therefore wanting to wash her hands. We've been able to get her to not give into washing her hands but she still has trouble getting rid of the thought - keep telling her to put it in her "worry box". The other one is fear of praying wrong or not being truthful to God, therefore she wants to pray over and over again. It's kept her up the past 2 nights. This one is going to be tougher because the compulsion isn't so much a physical action she keeps doing over and over again, but a mental ritual/action. We haven't finished the books yet and learned all the tools and techniques. So I'm eager to see how it goes once we use them all and implement them.

[lsad765]

Hi, yes, we read those books too, which were helpful for general ideas, but ERP therapy has to be much more focused and must follow an orderly course to work.

 

And, yes, it is a form of CBT, but CBT is also more general. You must use ERP with OCD.

 

Recognizing her obsessions and compulsions is the first step of ERP. Then you make a chart of each one she needs to work on, breaking them down into "smaller parts" if necessary. Then she starts to tackle each one slowly and deliberately. So first washing hands X number or times, then fewer, then fewer. Each time she manages to do it, give her a small reward. For example, we used a chocolate kiss, or a quarter, or dollar, or a little toy, or whatever you think is appropriate. Actually, it's best if you and she decide ahead of time what the reward will be. Make them small for each of the little accomplishments, and then when she conquers hand-washing completely, she gets something bigger, like going out for ice cream, or a special toy, or a movie night, or special time with you, or whatever she and you agree to.

 

Make each of the tasks doable at first and work up to the harder ones. The mental ritual will be harder but approach it in the same systematic way. By this point, she will have success with the handwashing and will be excited and motivated to stop the praying ritual because she will see how good it feels not to be bound by these rituals. That was when my daughter really got on board with the idea of "getting rid of PANDAS" and took it on as her own cause. Then she would start to come up with the tasks and the approaches. And she is only 6. By the way, ERP stuff takes TIME! We spent at least an hour a day (even on school days), integrated throughout her day, working on these tasks and we also did the worry box and "worry time" every night. It was a lot to do but so worth it to see the reward of my daughter getting better.

 

Just this morning, my daughter announced to us cheerfully that her PANDAS is completely gone! Her pride was infectious, so we cheered her on, but I know these things will come back, and taking her of Azith soon will present new challenges. So keep working on it and stay with it. You will make great progress.

[beeskneesmommy]

Is it because she has some kind of "occult" strep infection that hasn't yet cleared and that the Azith is still combating? Or is it because the Azith is acting as an anti-inflammatory? And how can I figure out which one it is? Would the quick turnaround back on treatment-dose Azith be indicative of one or the other? I will follow up with Dr. T but would love your input too.

 

 

 

Probably a little of both. Has your kiddo been tested for Mycoplasma and tick borne infections? My son was given Z-pack 2.5 years ago after a T&A left him with an acute PANDAS episode and walking pneumonia (he already had PANDAS prior to the T&A which was the reason why we did the surgery, but blew sky high as a result of Strep colonization after the surgery, then got pneumonia). Anyway, we noticed that the PANDAS improved dramatically when on Azith, but then returned. We played this game for a while, then went to Dr. B who explained that starting/stopping abx over and over can cause a disconnection between the immune system and the antibodies, causing an increase in the autoimmune process. My son was put on a combo of Augmentin and Azith for a long time to combat testing that showed Myco (walking pneumonia but can also be tick borne), and low level Lyme. Azith is the appropriate med for these infections in little kids and Augmentin combats the Strep. Both are anti inflammatories. The improvement was amazing and far more effective than Augmentin or Cefdinir alone.

[EAMom]

[ERP is the most effective therapy technique for OCD. It stands for Exposure and Response Prevention. It is a form of cognitive behavioral therapy that is proven to be very effective for OCD and it is 100% safe.

 

Just to clarify...there are actually no studies demonstrating the efficacy of ERP (or CBT or SSRIs) in PANDAS kids.

 

Here is a study http://www.ncbi.nlm.nih.gov/pubmed/15507582 that gets referenced a lot on CBT/SSRIs...that combo therapy is most effective for treating OCD (SSRI plus CBT). The problems I have with it are:

1) This study was not a PANDAS study, just 'garden variety ocd'. IMHO we can't extrapolate the findings to PANDAS kids.

2) The study only looks at age 7 and up...can't extrapolate findings to younger kids who may not have the maturity/capacity to engage in CBT or ERP. Many PANDAS kids are younger.

3) many PANDAS parents find that once the PANDAS kid gets medical treatment (abs, IVIG) they don't even need therapy

 

The feedback I get from parents (and also some clinicians, eg Dr. Murphy at the IOCDF conf), is that ERP can be useful for treating residual PANDAS symptoms once the child is already been treated medically. They admit it won't do much for a child in a full-blown exacerbation (think "brain on fire".) I suspect if there is a residual infection, autoimmunity lurking, ERP won't be terribly successful. ERP also requires some cooperation on the part of the child (they have to want to change/fight their OCD).

 

I would also ditto Beeskneesmommy's thoughts...there may be an occult infection. I suspect strep can linger in very small amounts in PANDAS kids (perhaps in tonsils or sinuses and/or intracellularly). My theory is that strep can sometimes act a bit like Lyme, hiding out from the immune system so it is difficult to erradicate. There are just so many reports (Saving Sammy is an example) of PANDAS kids regressing off antibiotics (so they stay on for years). I also believe PANDAS kids don't have a "normal" immune system against strep (so they can't fight it effectively).

 

Also, as Beeknees said, mycoplasma and tick borne infection are another possiblity. And there are a percentage of strains of mycoplasma that are resistent to Azith.

 

I would also be a little cautious about not doing any sort of antibiotic prophylaxis. Be aware that the more exacerbations a PANDAS child has, the more likely (Swedo mentioned the number as 3 in one interview) that the PANDAS will become chronic. (Note: I assume chronic means "treament resistent", that the child won't get back to their original baseline and there is a chance of permanent damage.)

 

And, I do have written down that Swedo did say (in my notes from the IOCDF conf 2012 when Swedo spoke on PANDAS), and I quote "Use of prophylaxis is very important."

 

In other words, don't be too eager to get off antibiotics (consider at least something, pen? to prevent future strep infections). Some seasoned PANDAS docs recommend abs until age 18 (or until PANDAS is a distant memory). I know that may be hard to hear, if your kid's pandas was relatively easy to treat, just consider yourself warned that things can go from bad to worse very quickly with these kids. And, sometimes waiting until they get another strep infection to use antibiotics can be a bit like closing the barn door after the horse has already escaped....but that's my opinion. PANDAS was life threatening in my dd's case (full-blown anorexia) and required hosp. and 3 HD IVIGs. We plan on keeping her on antibiotics until at least age 18.

Edited March 18, 2013 by EAMom

[Mayzoo]

Many docs used to have no real issues with prescribing long term ABX (years) for acne, but now they do not like to prescribe long term for PANDAS. *Sigh*

[beeskneesmommy]

Some see the importance of longer term abx for our children. And I second EAMom re: the probiotics. Mine is quite elevated for Candida, likely d/t long term abx. Sounds to me like more testing would be a good start.

[lsad765]

Hi everyone and thank you all for your thoughtful replies. There is certainly a lot to think about with this peculiar disorder!!

 

For my daughter, she is doing fantastic with Azith and ERP, so we are going to continue with both for the time being until we are ready, with Dr. T's blessing, to try to wean her off Azith again. Will try Motrin/Arnica to support her body as we do that, in case the problem is inflammation. If anyone else has ideas for safe, proven anti-inflammatory support, please let me know.

 

I should just add that -- for whatever reason, my DD has done remarkably well with the ERP! It has truly brought her back to the old cheerful, happy, confident, and easygoing girl we remember from 3 years ago! It may not work for everyone, but just based on my daughter's own experience, I would recommend at least giving it a try, even for young kids (my DD is 6). But to be fair, my DD's pandas is mild, she is not currently in a flare, and she is really committed to ERP and has taken it on as her own cause because it makes her feel so good. We are very lucky for all these reasons!

 

Thanks again for all the input.