Major backslide

[ptcgirl]

After such a great summer that was mostly where my 12 yr old daughter was back to being a normal 12 year old (did 3 weeks intensive ERP and 2 ivigs over summer), we are back to where she was six months ago. Yesterday we went for a followup ERP due to relapse and my DD literally walked out of the office because she couldn't handle it any more. Honestly, I think she was more angry about being back at this point and didn't want to even bother with the ERP. So freaking depressing. I don't know what the heck is going on. Her third ivig was in early Sept and she is nothing but worse OCD-wise. She is NOT sick at all. Allergies are well maintained. No one is sick in the house. The only thing I can think of is that Lyme and it's co-infections must be back. Talked to Dr. J's office yesterday, he wants her to stay off abx for the month so she can have the new Advanced Lab Lyme Culture test done. Not sure what Dr. B will think about this and (of course) haven't heard back from the email I sent his nurses in the IVIG center. The lack of communication really gets old. I know, I know I shouldn't complain because there are so many patients and so few doctors, but it doesn't mean it isn't annoying and hard to deal with. I just want my daughter to be well again and off this crazy roller coaster.

 

Thanks for letting me vent. I'm just at a point of not knowing what to do anymore. I feel like this cycle will never end. Does anyone really ever get better from this (and STAY better) besides Sammy from Saving Sammy? I need TRUE success stories of long term remission/cures. I need hope because I feel like this is hopeless.

[MomWithOCDSon]

Sorry. I know how you feel because we've been there at points ourselves. It stinks to see them do so well and then slip back, and the older they get, the more they seem to recognize what's happening, too.

 

That being said, I'll tell you that I think there are some real success stories but some of them have "left" the forum to move on with their lives.

 

Meanwhile, I consider my DS to be a success story, too, but for us it is an ongoing process. And I stick around here because I'm a "diehard fan" and have basically chosen, of all the available support groups and arenas for conversations regarding all things PANDAS/PANS, this venue above the others because I like the variety of voices and experiences I see and hear here.

 

I think one thing we all need to keep in mind is that "Saving Sammy" was not written in the heat of the moment; it was written at least a year or so after Sammy had recovered, and even then Beth allowed that he'd go back to abx when he was at school and realized he'd been exposed. Then, for a couple of years after that, either in a talk I heard her give or in some direct questioning (sorry, it's been a while, so I can't recall the precise circumstances), she allowed that Sammy still took some low-dose meds to help him contend with the remnants of attention deficits, etc. Now, Sammy's something like 20-21? And now Beth can say he's fully cured, he doesn't take any meds, doesn't have any OCD, etc. And I'm sure it's true. But his story, too, is a long narrative. And he's past puberty, he's a mature, intelligent adult who might still come across moments of anxiety, but he recognizes them and knows how to handle them.

 

You might recall there's a chapter toward the end of the book titled something like "A Delicate Balance," and I've asked Beth specifically about that. The chapter and Beth acknowledge that they walked a tightrope for a while . . . that things kept getting incrementally better, but it wasn't a straight line.

 

So, is my DS "cured"? Maybe. I don't know for sure. He's been off antibiotics for almost a year now . . . 10 months. He still has some anxiety. He still has some OCD behaviors. He still takes lots of supplements and a low-dose SSRI. He still goes to therapy. We still deal with OCD/ERP issues at home on occasion, though not daily anymore. And given his trajectory, I have every expectation that he will achieve full balance, maturity and success, not unlike Sammy.

 

I know sometimes it seems as though it will never end, and it gets demoralizing to see our kids keep rehashing things that we thought we'd already brought them through. Just hang in there! And stick with what you known can work/help: patience, consistency, ERP, immune support, etc. The sun will shine through again . . . maybe even today!

[LNN]

I'm sorry you're in this spot. We too are back on the roller coaster with DS, but the only difference is that I expected it. He stopped abx over the summer because he'd been symptom free for lyme for awhile and conventional protocol is to then stop abx and see what happens. As expected, he tanked because lyme that had been in films/cysts came out. So now we're back to knocking it down.

 

The way I've stopped myself from sliding into despair is that I see my son as a renovation. I think when he was little, he had an immune risk because he was zinc/B6 deficient (genetic - pyroluria). When he got sick, his immune system would misbehave a little. And a little worse each time. Then he contracted lyme that went undiagnosed. Then he got strep and it was the tipping point, crashing his system and letting the misbehaving immune system riot in the streets.

 

From there, we've had to work backwards. First we had to discipline the immune system, which any parent knows, doesn't happen overnight. It's a long series of corrective actions. As we've done this, we've uncovered foundational issues - like the pyroluria and yesterday, an eye coordination problem. Talk about a money-suck and emotional energy suck. The poor kid feels like he's never going to get well. "Why me" has moved into the house big time this week. But each layer that gets fixed makes it easier to find the remaining problems and fix them.

 

So back to the renovation analogy, it's like you walk into the basement and find a foot of water. Everything is ruined. So you have to drain the water, then remove the debris and ruined storage boxes, then you have to fix the most obvious leak. Then you wait until the next storm and then discover there's another leak that you didn't see the first time. But each time, the leaks are smaller, because you already addressed the bigger, more obvious leaks. And you're on alert, so you check the basement sooner and less water accumulates. This is a long haul. And each kid's root issues can be different. So it takes a long time. But finding the smaller leaks isn't a set back. It's actually another step forward, because it gives you the chance to make your repairs that much more complete.

 

Probably sounds more rosey than you're in the mood for, but that's how I'm keeping myself going these days.

[JAG10]

I'm sorry you're in this spot. We too are back on the roller coaster with DS, but the only difference is that I expected it. He stopped abx over the summer because he'd been symptom free for lyme for awhile and conventional protocol is to then stop abx and see what happens. As expected, he tanked because lyme that had been in films/cysts came out. So now we're back to knocking it down.

 

The way I've stopped myself from sliding into despair is that I see my son as a renovation. I think when he was little, he had an immune risk because he was zinc/B6 deficient (genetic - pyroluria). When he got sick, his immune system would misbehave a little. And a little worse each time. Then he contracted lyme that went undiagnosed. Then he got strep and it was the tipping point, crashing his system and letting the misbehaving immune system riot in the streets.

 

From there, we've had to work backwards. First we had to discipline the immune system, which any parent knows, doesn't happen overnight. It's a long series of corrective actions. As we've done this, we've uncovered foundational issues - like the pyroluria and yesterday, an eye coordination problem. Talk about a money-suck and emotional energy suck. The poor kid feels like he's never going to get well. "Why me" has moved into the house big time this week. But each layer that gets fixed makes it easier to find the remaining problems and fix them.

 

So back to the renovation analogy, it's like you walk into the basement and find a foot of water. Everything is ruined. So you have to drain the water, then remove the debris and ruined storage boxes, then you have to fix the most obvious leak. Then you wait until the next storm and then discover there's another leak that you didn't see the first time. But each time, the leaks are smaller, because you already addressed the bigger, more obvious leaks. And you're on alert, so you check the basement sooner and less water accumulates. This is a long haul. And each kid's root issues can be different. So it takes a long time. But finding the smaller leaks isn't a set back. It's actually another step forward, because it gives you the chance to make your repairs that much more complete.

 

Probably sounds more rosey than you're in the mood for, but that's how I'm keeping myself going these days.

 

I do so love my analogy queen!!!

 

Akin to your basement one, Dr. T used a water-main break......steroids can shut down the water main supply in a major way, but that is no way to handle a leaky faucet. It works, but it's too crude. You need more sophisticated analysis to determine exactly what is needed to fix the small leak (which if left unattended, can still cause plenty of headaches....$$$, overflow, irksome noise you can't get away from~ aren't analogies just awesome?) Even after a long time and much investigation, even when you determine there is a vitamin or mineral deficiency for example; then there is the dose...too much can be a problem too and....guess what? You're right, too much can look behaviorally identical to too little! So it is through much trial and error that these discovers are learned. There are no all-in-one PANS/PANDAS plumbers YET. There are copper specialist and PVC specialist and I'm running low on my plumber knowledge, but you get my point. Certainly, we can't go to Home Depot and pick-up a do-it-yourself plumbing manual. We are all tinkering the old fashion way with the most informed knowledge we can get our hands on and wrap our brains around.

 

I said the other day.....I'm not sure if puberty helps "right the immune system" or if it just takes us each that long to figure out how to fix all of our kid's specific leaks.

[dcmom]

Ptcgirl-

 

I feel your pain. This backslide sucks for your dd, esp after all of the hard work she put in.

 

The thing to hang on to is that she WAS better, you got her there once, you will do it again.

 

(For now) I feel my kids are a success story. Things have been going really, really well for them for the last year plus. However, they are not cured, for sure we see blips. I heard Dr T's water main break to steroid analogy- and although I love the man, I did not love that analogy. For us, if we see a leaky faucet, we can be SURE a water main break is looming, so we do the only thing we can to stop it. And for us it has so far. We need to do these steroids a few times a year, for each child, but beyond that they need nothing- no meds, no supplements. So, frankly, I feel pretty good about it. IMHO steroids are a very effective method to "manage" pandas, I think they are underused, and also not used creatively enough. One size burst does not fit all.

 

Lyme is a tough one. I think I would do the blood culture test. Be sure you know what you are dealing with. I am not disputing chronic lyme whatsoever, but think in addition to a chronic infection, there is a possibility of developed autoimmunity that lasts after the infection (I think Dr Fallon at Columbia is looking at this). You can't really treat effectively unless you know with absolute certain whether you are treating infection or autoimmunity. Add pandas on top, and for sure, you have got a mess. Once you know what you are exactly dealing with- you can hit it HARD.

 

I have seen both of my pandas kids have a flare up with no known cause- so it does happen.

 

You are not at square one, you and your dd have learned a lot- and once the crisis passes- she will recover faster. Both of my kids had a major exacerbation at onset, done really well after treatment, got back to 100%, only to backslide. But now things are good, and have been stable for a while. I keep waiting for the other shoe to drop, but, having "recovered" them twice, I feel slightly more confident we can handle what comes our way. I do think as our kids get older, things will calm significantly. I don't know if they will ever be completely free of pandas, I do think they might have a bit of a cross to bear (mild anxiety, etc)- but who doesn't.

 

We try to work on perspective a lot in our house. Pandas sucks, but most people you will meet have challenges: divorced parents, diabetes, allergies, sick sibling, poverty, etc. It helps all of us to be exposed to these issues, and remember we are not alone in our suffering. In the midst of pandas- it feels like the worst thing in the world (to see your child suffer so)- but our kids get well, we will still have them and they will have us. And sometimes when we discuss these other issues, my dd says she would rather have pandas than have the others. So they will be ok.

 

Hope this rambling post makes some sense

[philamom]

Let me know if you have any questions regarding the Advanced Lab lyme culture test - my daughter cultured positive (high) in December. We received a photo with three spriochettes shown in it. The downside is the test still can miss 20% of lyme results (may not be in that sample). And of course, it doesn't check for co-infections. Wasn't your dd positive for bartonella? My daughter was positive with Specialty lab (Quest) for ten months, but recently started testing negative. At the exact time she started testing negative, Specialty Lab started sending her results within the regular labs done with Quest -before it was sent separately by Specialty. I don't know if they changed their testing procedure, but I still think my daughter is dealing with bartonella. Bartonella is hard to get rid of.

 

Also, have you tested for yeast (blood & stool)?

 

edit- we are also in a minor flair since my daughter's last ivig. She is dealing with a vomting phobia (which she's been dealing with off/on for a while - but severe at the moment). But what we are seeing that we have not seen in over a year, is a return of intrusive thoughts and extreme difficulty with decisions. She keeps asking when her next IVIG will be, because it has helped in that area before.

 

I also want to be off this roller coaster ride. Hang in there!

Edited October 5, 2012 by philamom

[sf_mom]

I am going to throw a few things out there hoping you'll investigate them with your LLMD.

 

When we see sudden regressions or treatment stalls our LLMD starts to think predominately 2 things: new exposure or what co-infection are we missing. He explained it to me that it is like the game of 'Whack a Mole' you beat down the Bartonella and potentially one of the other co-infections takes predominance. So, what was working in terms of antibiotics is now no longer working. In our case, that happens to be Babesia or BLO like organism even though we lack positive results in two children. It doesn't seem as if you have had a recent illness so I am wondering if you are missing a co-infection with current protocol?

 

It is also unclear how much you let up on Lyme treatment and if you treated for biofilms yet? You might consider testing for Biofilms and BLO via Fry Labs (FL 1953). FL 1953 is a Biofilm forming BLO which would requires an anti-malarial. Our son who was not positive for Babesia did show indications of FL 1953 via Fry Labs plus a substantial biofilm problem. I believe the test was $280 or $380 prior to filing with insurance.

 

A couple of things to tamp down inflammation without having to use steroids would be: Enhansa or Maxi Flavone. Maxi Flavone is a TNF-alpha blocker and great for general inflammation issues (also used for infertility). Enhansa is curcumin. I've attached links to both and have been very helpful to our children.

 

http://leesilsby.com/enhansa-homepage

 

https://www.drmyattswellnessclub.com/FertilityMaxiFlavone.htm

 

Of course, if you are dealing with Lyme and not checked for KPU I would highly recommend investigating that as well.

[ptcgirl]

Wow. Lots of good info. Thanks everyone. I was at such a low point and your comments really helped. Strangely, dd is doing really well yesterday and today. So weird. I guess she was herxing. She's off the abx and happy with very little OCD. I'm sure it is Bartonella again. I just dont even want to think about putting her back through the herxing. Ugh. There has GOT to be an easier way to fight this stuff.

[pr40]

This is only indirectly related to the original post:

whatever I know about PANDAS I have learned on this forum. Second, I am our kids main doctor (although I am not a physician) because I am the one who spends time with them, who knows them better than anyone else, as well as the one who has high stakes in their well-being.

Now, I want to plead once again and ask you all whose knowledge and experience seems more important than any other resource for all of our kids: could we, please, post our kids brief histories?

Among the things I have learned is that there are kinds of PANDAS/Pans. Some come with Lyme, some don't. Some come with OCD, some don't. Some come with high titers, some don't. But, there also seems to be a correlation between kids who have similar behavioral and physical symptoms and what helps them.

Put another way, my DD8 seems to be a combination of "momWithOCDSon" and "Hayley" kids -- you may know what I mean.

Brief cases histories that would include symptoms, what you tried, and what the effect was would, I think, help us all very much.

[ptcgirl]

I thought there was a spot to put our "history" on this site, but couldn't find it. Is there a place where people can post histories?