Jump to content
ACN Latitudes Forums

My son has PANDAS; are we allowed to stay?


Recommended Posts

In response to the recent firestorm: My son clearly has PANDAS. He was dx at 2.5 and had many, many + Strep tests with the usual rapid onset that subsided w/abx. Then he got really sick after a T&A d/t it being performed while he was Strep infected. His Strep titers were very high and stayed that way for a long time. Couldn't get him back to himself and fought for a long time. He also had walking pneumonia last year and later tested + for Myco. He most recently tested + for Bart and Lyme thru IgeneX. I am not totally sold on the Bart & Lyme dx, however, but it doesn't really matter because he is almost symptom free with the abx treatment that is often used for all of the above. Dr. Bouboulis explains that he DOES have PANDAS but that he also has co-infections. Sounds plausible to me since the less complex abx treatment helped to improve his condition, but we couldn't get him all of the way until we started treating for the Myco (prior to getting the IgeneX results back, but it's the same treatment anyway). SO, because of these recent dx, are we no longer welcome on this forum? I identify with the PANDAS dx much more than Lyme, but I have an open mind when it comes to getting my kid back. Is this now a purist forum, only for those that are attached to PANDAS only, with no co-infections? Please help me to understand, as I find myself feeling really negative and pushed aside as a result of my perception of the recent thread "Has anyone tested neg. thru Igenex?" Kath :>

Edited by Beeskneesmommy
Link to comment
Share on other sites

Hi

this IS the PANDAS/PITAND forum so yes, of course you belong here.

 

Sheila added the Lyme forum, and that really is where Lyme related discussions should take place.

That does not mean that Lyme cannot be mentioned here, but not to the point of making anyone feel as you have expressed!!

I have alerted her to some of the more contentious posts on that other thread.

 

I do hope your will not feel intimidated. This is supposed to be a safe haven for parents to support each other and share info in constructive ways, building each other up, not tearing each other down.

Link to comment
Share on other sites

In response to the recent firestorm: My son clearly has PANDAS. He was dx at 2.5 and had many, many + Strep tests with the usual rapid onset that subsided w/abx. Then he got really sick after a T&A d/t it being performed while he was Strep infected. His Strep titers were very high and stayed that way for a long time. Couldn't get him back to himself and fought for a long time. He also had walking pneumonia last year and later tested + for Myco. He most recently tested + for Bart and Lyme thru IgeneX. I am not totally sold on the Bart & Lyme dx, however, but it doesn't really matter because he is almost symptom free with the abx treatment that is often used for all of the above. Dr. Bouboulis explains that he DOES have PANDAS but that he also has co-infections. Sounds plausible to me since the less complex abx treatment helped to improve his condition, but we couldn't get him all of the way until we started treating for the Myco (prior to getting the IgeneX results back, but it's the same treatment anyway). SO, because of these recent dx, are we no longer welcome on this forum? I identify with the PANDAS dx much more than Lyme, but I have an open mind when it comes to getting my kid back. Is this now a purist forum, only for those that are attached to PANDAS only, with no co-infections? Please help me to understand, as I find myself feeling really negative and pushed aside as a result of my perception of the recent thread "Has anyone tested neg. thru Igenex?" Kath :>

 

I am so saddened by your post. This forum is/was/and continues to be a tremendous resource to many families. I feel in my heart and soul that EVERYONE is allowed to post in any forum here. I do so hope that you don't let this upset you.

 

I just needed to speak up and put this in a proper perspective. This is NOT about Lyme vs. PANDAS. It never has been about that. I firmly believe that every person who posts here wants all of our suffering children to get better, and ALL of the posts reflect that.

 

This is more about personality conflicts than anything else, and I really would urge everyone to understand that dust ups like this have been happening for some time now. Not even with regards to Lyme and/or PANDAS either.

 

For me, it is just disheartening to read posts that sound so definitive and they are put across as fact, when in reality there is very little "Facts" in the whole treatment of Neuropsych disorders. I understand that it is a posting style of some, but couching comments with phrases such as: "it's been my personal experience"; "our doctor has speculated that..."; "parents have reported successes with..." are so much more helpful than a flat statement that is put forth as if it's a fact.

 

When something is presented as a fact, not as possible helpful information, it makes other posters who have decided that they want to pursue a different course of action feel as if they are not doing the right thing for their child. I don't know any parent who isn't going to get defensive if it seems someone thinks they aren't helping their children enough.

 

When someone posts in such a way that insinuates they are speaking the truth, and it's really just their strong opinion, they should be called on it. Frankly, one function of this forum is sharing anecdotal information. That anecdotal information has helped soooo many people. I urge Everyone to continue to post what they feel is applicable. It's our jobs to objectively decide if that information is something we want to pursue or not.

 

Positive thoughts and prayers to all.

 

Good Luck.

Link to comment
Share on other sites

Thank you. It is not that I am intimidated as much as I feel deeply disturbed over my new perception that there must be some sort of "purist" position re: Strep:PANDAS and that somehow if co-infections are discovered, it knocks us out of the PANDAS ring. My son DOES have Strep:PANDAS, but sadly, life threw in walking pneumonia and, apparently, a nasty little tick. This dumnfounds me, but that's what the labs say, and he is recovering with the extra abx protocol. When we defeat the Myco and the tick infections, he will STILL have Strep:PANDAS because that is the underlying genetic big one. The co-infections have just complicated the recovery. This is how his specialist sees it and how I do as well. I am unhappy that there seems to be such a dicotomy between the PANDAS & Lyme victims, as it seems that the 2 often go hand in hand. I am leaving this forum tonight with an icky feeling whereas I used to leave with feelings of accomplishment as I learned something helpful, or helped another, or found comfort. I wish warm, positive things to you all and, ultimately, recovery for your loved ones. -Kath

Edited by Beeskneesmommy
Link to comment
Share on other sites

I am in a similar situation to yours. My ds14 clearly has PITAND and has for most of his life - in our case usually triggered by sinusitis. His igenex tests (before IVIG) were overall negative, with a positive band 41 (which was probably mycoplasma) and a few indeterminate bands.

 

After a HORRIBLE post IVIG PANDAS/PITAND neuropsych exacerbation, we did an antibiotic challenge to retest for lyme. We REALLY looked for lyme... Urine PCR, Blood PCR, CD57... We did not find any positive lyme bands (except band 41) and even fewer indeterminates than we had sen pre-IVIG.

 

However, to our surprise, the antibiotic challenge resulted in much IMPROVEMENT in his neuropsych symptoms... and this improvement went away when he went back on azith alone. So.. clinically... he does much better on lyme meds.

 

Also, his immune system has definitely been on the decline in the past few years as he now has depressed CD 57, along with low IgG, and low IgA (which were in the normal range a few years ago) What would make these immune markers drop? Is it lyme? Coinfection? Some yet-to-be-determined microbe that is eluding our current abilities to test??

 

To be quite honest, I am well past the point of caring what you call it. My son does well on the lyme antibiotic cocktail and on the supplements recommended by the lyme doctor, coupled with IVIG. We will continue to do that as long as it seems to help.

 

I am also really getting tired of in-fighting about lyme vs. PANDAS/PITAND. Some of our kids have lyme and some do not and some have infections that have yet to be named. Let's get over it and find ways to help these kids to function.

Edited by kimballot
Link to comment
Share on other sites

I'm recalling the article in the International OCD Foundation's journal, posted a few weeks ago. In that, it was stated that the term PANDAS has been changed to PANS (Pediatric Acute Onset Neuropsychiatric Syndrome) to account for the fact that several other infections can result in sudden onset OCD, tics, etc. PITAND would indicate that as well. So my feeling is we are all in this together regardless.

Link to comment
Share on other sites

Kimballot: I am interested that you say that band 41 was probably Myco. My son was + on 41, igg & igm in both Quest & Igenex (same time blood draw). he was + on band 39 and "IND" on bands 23-25 for Iegenex results (igg). He was "IND" igm on 39 for IgeneX as well. His Myco titers in several different labs have been elevated for quite some time and he had walking pneumonia Sept., 2010. HOWEVER, the cocktail of abx that he is on was originally started to treat the known Myco with the PANDAS, & after we received the Bart/Lyme results, was not changed because the treatment would be the same for all of the above. It is a known understanding that band 41 can be a false + d/t Myco?

 

Thanks, Kath

Link to comment
Share on other sites

Beesknees-

 

Of course you are welcome- that seems like a silly statement.

 

I think the major issue that irks pandas only parents, are the inflammatory and fear inducing statements that are made, and where fringe medical practices are insisted to be absolute truths. It is not lyme- it is the way some statements regarding lyme are made on the pandas forum.

 

Of course we are all in this boat together- and frankly, I am suspect of anyone (or any doc) that insists they have all the answers.

Link to comment
Share on other sites

Beesknees-

Of course you are welcome- that seems like a silly statement.

 

I think the major issue that irks pandas only parents, are the inflammatory and fear inducing statements that are made, and where fringe medical practices are insisted to be absolute truths. It is not lyme- it is the way some statements regarding lyme are made on the pandas forum.

 

Of course we are all in this boat together- and frankly, I am suspect of anyone (or any doc) that insists they have all the answers.

This is exactly where I was coming from. And Bees, when I commented about the comfort zone of sharing 'I thought it was just pandas until we found lyme', my point was that that was not my objection-sharing personal stories. So, absolutely, folks should feel comfortable sharing their own experiences as they see that they fit the specific venue.

 

We all have to be pragmatically mindful of our likely audience. This is an evolving process. I know I've made mistakes like posting as if we are only a group of moms here and forgetting that there are dads and adult/teen patients (who know way more than I do) who have been offended because I did not consider them when making remarks. I acknowledged, apologized, learned from my mistake and moved on. The frustration/tension remains because the sentiments dcmom articulates have been expressed by various pandas parents over time initially in a polite manner, then firmly and sadly now with confrontational tone..... yet appear to fall on deaf ears. Hopefully, this has changed.

 

I read your other post about steroids. There used to be a time last year when an new family would post their story and Chemar would always post a gentle, respectful warning about steroids with possible TS. She would clearly state her child was not pandas, but has TS. Well, it got to the point that other pandas parents who greeted new families would proactively include Chemar's advice and now she doesn't really feel the need to do that much anymore. I think the "pandas only" folks who mostly post here have done that for Lyme et al when they've been given a chance. Repeatedly, I have seen pandas parents who have ruled out Lyme recommend complete and thorough testing including lyme/co upon initial consultation if the Lyme families don't beat them to it. I think it is more than merely tolerated. They may not recommend testing to the extent that some lyme/co families feel is necessary, but to brand this group as anti-lyme is not honest or fair.

Link to comment
Share on other sites

Thank you JAG10. To clarify, I was not branding this forum as "anti-Lyme" - don't recall stating that phrase. Just responding to the tone of the recent post that became quite heated, and feeling just as I stated - as if we somehow don't have as much feeling of "belonging" to the group now that further co-infections have been found. It seems, from the other responses, that several members are encouraging me to continue and letting me know that the co-infections do not exclude me. That eases my mind...

Link to comment
Share on other sites

Good, glad to hear it.

 

And I'm sorry, I wasn't saying you were branding this board as anti-lyme. But I'm sure you have recently read that others feel it is.....Maybe people don't feel we are anti-lyme, just not pro-lyme to the extent they would like us to be. I still feel the general sentiment on this board goes beyond mere tolerance and that we are a fair-minded group.

Link to comment
Share on other sites

We definitely fall into the category of PANDAS plus co-infections. We have positive Lyme test and are still looking at other co-infections. And I have every intention of staying on this forum and on the Lyme forum because both have gotten me through some pretty rough patches. I've certainly been on the receiving end of a few heated and very strongly worded responses. I assume they are made with the best of intentions but they can sometimes be frightening. I try to take them with a grain of salt and remember that when I'm in crisis mode I tend to be pretty intense as well. More times than not I've been able to pull out something from each post that helped. I don't claim to be in the middle of all this - not even sure what post got heated- but I'd hate to see anyone feel like they cannot come here for help. I certainly intend to be here for as long as it takes to get my son well.

 

Hope everyone else feels the same.

Link to comment
Share on other sites

I honestly believe that this is all a misunderstanding. I am going to make a blanket statement - Nobody cares who comes to this forum and discusses Lyme with pandas and co-infections. We are hear to be a sounding board for anyone with pandas plus something else. NOBODY CARES!! The only thing that is bothersome and makes people JUMP is when strange theories that are not tested or backed up are put forth as fact. HECK, I DONT CARE IF SOMEONE DOES SOMETHING STRANGE AND IT WORKS AND THEY TELL US ALL ABOUT IT - just state that it is a strange an unproven theory , not fact.

 

Another thing to remember, we are all strangers who have become friends but let's face it - we are still unknowns. For all anyone knows about me, I am a hoarder who sings to dolls at night and thinks they are real. I may get my jollys from posting on forums and then talk to my dolls about it. Remember that before you take advice or get offended by anyone on this forum. Take everything you read and research it yourself! Lots of great advice on these forums but lots of stuff to throw in the discard pile too.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...