The cause doesn't matter, the treatment is the same!

[PANDASmcnuggetsw/fry/coke]

Hi families,

 

We have been gone from the forum here for a while as we watched and waited to see how our daughter, 13 would respond to her second IVIG. Now, exhausted, we are at a fork in the road and I'm looking for input from you seasoned parents on which direction to go.

 

She was diagnosed by Dr K with PANDAS in the spring of 2010. 5 months later, she had her first IVIG and she seemed to get to the 70% level. At 7 months, it went downhill and she said she needed another. (she was right) Interestingly, one doctor says that at 7 months the effectiveness of IVIG may start to wear off b/c its shelf life in the body diminishes at that point. She had her second IVIG in July of this year a bit over 8 months after the first one. We are now 3 months post her second IVIG and things have not improved like they did with the first one. In fact things got pretty scary just three weeks ago.

 

She was seen by Dr. Chugani who didn't rule out PANDAS, but wanted her to see a psychiatrist (a very renown one) to rule out "regular OCD." Two days ago we saw him and his office for an entire day. He would not rule out PANDAS either, but said "regardless of the cause, the treatment is the same"....SSRIs and CBT.

 

I have a very hard time agreeing with this. If the cause is different, i.e her severe OCD is infection/autoimmune related v.s. non-infection or autoimmune related, the roads of treatment DO seem to be very different!! I do NOT care or need to be convinced which diagnosis she has, I just want her correctly diagnosed and I want her to stop suffering.

 

So I have been wracking my brain and talking with her about the onset and the course of her illness to determine if it is possible this is regular OCD. She is pretty open about discussing this stuff with me. She remembers a brief episode when she was 5. We saw nothing unusual in her at all this time in terms of OCD, not a blip. She did have some very severe gastrointestinal illnesses requiring hospitalization though in her pre-school years. Then at age 10, she had a major and sudden confessing episode about everything in the world she thought she ever did wrong and began excessive handwashing. This was the first time hubby and I ever even considered and looked into OCD. We don't remember her being sick then. The episode lasted a few months then seemed to completely disappear.

 

At 12, she had the Hep A vaccine (due to adopted brothers coming home from Africa) and then came down with severe mycoplasma and then WHAMMO an extremely sudden and severe onset of OCD, kind of like the exorcist syndrome that I could pinpoint the day and the hour when it seemed like a switch was flipped. She also had many of the "textbook" PANDAS symptoms, the frequent urination, the deer in the headlights look, the handwriting regression and decrease in math skills and separation anxiety. That exacerbation lasted at least a month, but she has never returned to baseline since then, despite the steroid burst, the ABXs and two IVIGs, she now has chronic and severe OCD.

 

Through bloodwork, her myco numbers were high and now have come down, her strep numbers were always below zero (WIERD) and now have climbed. They are now in the normal vs. subnormal range, but we are checking them today b/c the climbing numbers may be significant for her since they were so low before.

 

She has tested negative for lymes through Igenex. We are rechecking her thyroid. I'd consider PEX if I thought that was the right thing for her. She has seen a lot of improvement taking N-AC. Does anyone here take higher doses of this? She is on 600 mg daily, and she thinks this is a help, but it only gets her to 50%. SSRIs? It is scary to think of trying that when I have read that they may activate in kids with PANDAS.

 

If you have gone this far, thank you. Please share any input on the forum or privately. If we have been on the PANDAS path erroneously I want to determine that and get on the right path. If we are correct in having been on this PANDAS path, I don't know what to do next!

 

Thank you,

PANDAS McNuggets w/fry/coke

[PANDASmcnuggetsw/fry/coke]

I forgot to mention that her Cam K scores ( Univ of Oklahioma study) showed her to be in the upper range of PANDAS.

[MomWithOCDSon]

So I have been wracking my brain and talking with her about the onset and the course of her illness to determine if it is possible this is regular OCD. She is pretty open about discussing this stuff with me. She remembers a brief episode when she was 5. We saw nothing unusual in her at all this time in terms of OCD, not a blip. She did have some very severe gastrointestinal illnesses requiring hospitalization though in her pre-school years. Then at age 10, she had a major and sudden confessing episode about everything in the world she thought she ever did wrong and began excessive handwashing. This was the first time hubby and I ever even considered and looked into OCD. We don't remember her being sick then. The episode lasted a few months then seemed to completely disappear.

 

At 12, she had the Hep A vaccine (due to adopted brothers coming home from Africa) and then came down with severe mycoplasma and then WHAMMO an extremely sudden and severe onset of OCD, kind of like the exorcist syndrome that I could pinpoint the day and the hour when it seemed like a switch was flipped. She also had many of the "textbook" PANDAS symptoms, the frequent urination, the deer in the headlights look, the handwriting regression and decrease in math skills and separation anxiety. That exacerbation lasted at least a month, but she has never returned to baseline since then, despite the steroid burst, the ABXs and two IVIGs, she now has chronic and severe OCD.

 

Through bloodwork, her myco numbers were high and now have come down, her strep numbers were always below zero (WIERD) and now have climbed. They are now in the normal vs. subnormal range, but we are checking them today b/c the climbing numbers may be significant for her since they were so low before.

 

She has tested negative for lymes through Igenex. We are rechecking her thyroid. I'd consider PEX if I thought that was the right thing for her. She has seen a lot of improvement taking N-AC. Does anyone here take higher doses of this? She is on 600 mg daily, and she thinks this is a help, but it only gets her to 50%. SSRIs? It is scary to think of trying that when I have read that they may activate in kids with PANDAS.

 

If you have gone this far, thank you. Please share any input on the forum or privately. If we have been on the PANDAS path erroneously I want to determine that and get on the right path. If we are correct in having been on this PANDAS path, I don't know what to do next!

 

Thank you,

PANDAS McNuggets w/fry/coke

 

Hi!

 

Well, my DS14 is one of those who was diagnosed with "regular OCD" and we still put him through his paces with CBT/ERP. We also got the answer you got re. "no matter how he GOT OCD, the treatment is the same: CBT and ERP." But, I have to tell you that our turning point came 6 years into this whole mess, when his OCD got so bad that CBT, ERP and SSRIs alone couldn't begin to touch it. Enter PANDAS, abx, and finally, an increasingly functional kid from October 2009 up through today. It has not been overnight -- we're at 2 years and counting. And it isn't 100% at this point, either. But the difference between before PANDAS treatment and after is profound.

 

I completely agree that CBT and ERP are invaluable tools for combatting OCD whenever it tries to get the upper hand, but I cannot agree that medicating the OCD (with SSRIs or antipsychotics) and trudging off to therapy is a substitute for treating the underlying cause, whether that's an active infection or virus, an auto-immune response, or whatever. I know it's expensive; we've not done IVIG, but the abx alone costs us in excess of $200/month out of pocket because the insurance company has determined that they are not necessary for DS's diagnosis. And then there are the therapy bills! But all that said, if I had to do it over again, I would. There are no guarantees, and it seems as though, more often than not, it is 2 steps forward and 1 step back. But we're still gaining ground, and that's what counts in my eyes.

 

We do, however, currently utilize a low-dose SSRI for our DS in conjunction with the other interventions. The hope is that it won't be necessary forever, but for now, it seems clear that it gives him an edge over his anxiety. The trick truly is to start very low and not raise the dosage too quickly, if you raise it at all. These are daily meds, though, so if you are going to get activation as a result of trying an SSRI, you'll know it pretty quickly (at just a minutely higher dose than he's currently taking, our DS reacted within the first 48 hours of the increased dose), and then you can scale it back again and the activation will subside. At least it did in our case.

 

As for NAC, is your DD 90 pounds or more? If so, she would qualify for an adult-sized dose. There were two Yale/NIMH trials for NAC and OCD; one was with kids, and the dosage there was 1,200 mg. per day. For adults, meanwhile, the dose was 3,000 mg. per day. (You can Google and get these trial postings; if you have trouble, PM me and I'll get you a copy, if you like.) Either way, your DD's current dose would be low by these measures. My DS14 is taking the adult dose and has been for some time. We believe that it helps him.

 

All the best to you and your family! Don't give up! Time is likely part of the recipe here, too!

[PANDASmcnuggetsw/fry/coke]

Thanks Nancy,

 

I'll look for those studies. She is 5'8" and 145 pounds so taller than some adult females!

May I ask which SSRI your son is on?

 

Thanks again.

[MichaelTampa]

The "doesn't matter the cause, treatment is the same", is for those people content to live with handing over drugs to manage symptoms. That's how that psycho doctor you saw sees the world, and sounds like that's not how you see it, and frankly that's not how most of us on here would look at things.

 

Your story has enough pretty clear evidence pointing to the fact that this is infection and/or autoimmune related (vaccine, CamK, NAC).

 

I can't imagine what "regular OCD" is, but I guess that's for those that think they can have OCD with no actual cause. I can't believe in that. There is a cause.

 

Drugs can help manage symptoms, even while looking for a real cause and longer/better solution. Of course the SSRI's are pretty significant drugs, not without their risks and problems, for sure.

 

From what you describe, sounds like something PANDAS-like is going on there. There may be another step or two you can take down the PANDAS route, and that may be worth exploring. Perhaps, though, there is more than PANDAS going on ... lyme or viruses. The NAC is a clue, I think. NAC is helpful for a number of things, one prominent thing though is with making glutathione which helps the immune system and detoxing. When NAC helps with OCD, there is a reason it helps with OCD beyond that it helps with OCD, the OCD has a cause (such as that neurotoxins created by an active infection are causing the neurological system to go haywire) and it is helping with that cause. I think looking deeper at hormones/endocrine system and at a full list of possible infections could be useful.

[LNN]

I have the same thoughts Nancy does. In my own bias, I'm not sure that 50 yrs from now, anyone will think there's such a thing as "regular" OCD. That said, "regular" OCD isn't known to respond to IVIG the way your DD did. It doesn't go "whammo" to myco p. But that's my bias. I would venture a guess, given the doctors you've seen, that long term abx or combo abx (two at the same time) isn't something you've tried for a length of time. If you haven't, you may want to consider that as a trial - maybe a few months?

 

You can also ask your doctor about some blood tests that show certain things about the immune system. CD57 is a measurement of natural killer cells. It's used in lyme to see if the body's ability to mount an attack is being suppressed. C3d is a measurement of a general activation of immune complexes. A chronic infection might cause the immune complexes to stay elevated (my daughters rose consistently for a year before she was treated and have drastically declined after 10 mos of combo abx). C3a and C4a are immune complexes that suggest immune complexes activated against lyme or mold (and probably other things). So there are some immune systems you can check on - where "regular" OCD people theoretically would have normal results.

 

My impression is that not every Pandas doc is willing to go down this path. It's just something to look into.

 

In the meantime, I second the thought that helping your daughter and family cope is also important and think ERP is a tool that will serve her well for her whole life. (Tho she may have a really hard time until the medical piece is under control - if it's an infection-triggered OCD). I also think an SSRI isn't the worst thing in the world. As Nancy said, it's not a life long decision. You can always start very low and always chose to taper off if it doesn't give relief.

 

That said, I too have always tried supplements first. Inositol helped my son during a bad period. We tried NAC for my daughter (started at 600 mg then moved to 1200) but after a week of full dose, she was far more emotional and angry, so we tapered off. I hear good things about in in the OCD world. But my daughter has lyme and NAC is apparently a good biofilm dissolver (lyme can live in biofilms). NAC dissolve mucus, so if there are organisms living in a mucus castle where the immune system can't see it, NAC can expose the buggers and set off a PANS episode as the infection loses its camouflage. So I only throw that out not to say don't do it, but to be aware. If you did try NAC and saw a negative reaction, that might tell you something (strep and viruses can live in biofilms too). As I said, lots of good press about NAC for OCD, so I'm not trying to discourage you.

 

Getting your child relief is priority number one. But I would still encourage you to consider medical treatments given her response in the past. As Nancy said, that medical piece can make a night and day difference in the effectiveness of the ERP and SSRI/supplement tools.

 

Best of luck!

[MomWithOCDSon]

Thanks Nancy,

 

I'll look for those studies. She is 5'8" and 145 pounds so taller than some adult females!

May I ask which SSRI your son is on?

 

Thanks again.

 

Then she should be able to take the adult dose of NAC, though you should titer it up gradually to make sure that it doesn't give her any gastro distress. I've also read (somewhere, can't remember where just now) that Vitamin C should be dosed with it for best benefit and fewest side effects; can't remember why, but we've followed that protocol for the last year or so.

 

The SSRI: my DS is about the same size and weight as your DD, and he's taking 75 mg. Zoloft. Anything over that, and he definitely hits that "activation" level.

 

Good luck!

[911RN]

Hi families,

 

She has tested negative for lymes through Igenex. We are rechecking her thyroid. I'd consider PEX if I thought that was the right thing for her. She has seen a lot of improvement taking N-AC. Does anyone here take higher doses of this? She is on 600 mg daily, and she thinks this is a help, but it only gets her to 50%. SSRIs? It is scary to think of trying that when I have read that they may activate in kids with PANDAS.

 

If you have gone this far, thank you. Please share any input on the forum or privately. If we have been on the PANDAS path erroneously I want to determine that and get on the right path. If we are correct in having been on this PANDAS path, I don't know what to do next!

 

Thank you,

PANDAS McNuggets w/fry/coke

 

 

quote]

 

My DS11 started on SSRI in June for suspected PANDAS. He is taking Prozac 20 mg. I have nothing to report but good things- only noted side effect is teeth grinding at night. he has tolerated it well with improvement in OCD behavior. He is not on long term antibiotics, we have not done IVIG or PEX. His OCD was never an "institutional" type or severely debilitating- just quirky. However, last Spring after Strep he was bad. We went on 90 days of high dose Azithro which improved things significantly. He did get ear infection/?Strep on Sept 14th and we had recurrence of tics and exacerbation of OCD which is diminishing now after 1 month. Stayed on high dose Azithro for 2 weeks followed by week or so of Motrin 400mg BID. This exacerbation was not nearly as bad as last fall or last Spring nor has it lasted as long. How much the SSRI plays into that I can't say.

 

There are so many opinions on the whole PANDAS issues, how to treat, what is right, what is wrong. If is is infectious/autoimmune vs. regular OCD. I don't bother myself with those arguments anymore. I'm not sure that medicine, docs or researchers have spelled out a clear "path." Don't beat yourself up over that- it's all a big crapshoot. Sad but true- anybody that says different is a liar or just an arrogant, know it all that doesn't know sh+t. Once they come with clear(er) dignositic criteria, clear algorithms for treatment and clear reserched based results, ICD9 codes acceptable for insurance etc.- then they can tell us what is right and what is wrong. Right now, most everything is anecdotal and most (including docs) are doing their own thing and some are getting rich of of it. Accepting only private pay for services, IVIG etc. Some parents are lucky with abx alone, some after IVIG and some not at all- despite everything.

 

After 7 years of dealing with a child nobody could figure out-I've adopted the "trial and learn" philosophy keeping in mind to "do no harm" as much as possible.DS is doing well on Prozac and it has improved his quality of life, ours, academics, socialization etc. At some point, one gets tired of trying to figure all of this out by themselves and I took a leap of faith with the doc. Not trying to outguess him or out reasearch him. Let's just try what doc suggests- I did and it has worked. Not 100%- but he is improving.He's not worse, he's better.

 

All I can say is my son shared many of the same textbook PANDAS symptoms as your child with years of +Strep about twice a year. He is better on Prozac. I, too, was hesitant when I read on forum that SSRI's, especially, higher doses may activate or cause increased signs of PANDAS. That has not been our experience. The only thing that caused exacerbation was illness/infection and the same was true when he was NOT on Prozac. Thus, I don't think I have "lost" anything. This episode has been shorter and not as severe so, perhaps, I have gained something with SSRI I am not even aware of.

 

All of this is hard....each parent has to decide what is right for your child. Your child sounds like she can also activiely engage in the decision also. I went up low and slow on SSRI- 5 mg at a time every 6 weeks. We are at 20 mg- return to Neuro end of October. I'm not sure what the plan is- go higher or not. We still have some OCD behaviors- if doc suggests an increase- I may try it to see where we end up?? Prozac dosage for OCD can be up to 60 mg. We are not even close to that. If higher dosage gets us OCD free/better then I'm willing to try it. Trial and learn....I can always back down if we don't like what we see.

 

You've done all the things recommended -consistent with her high Cam K score with 2 IVIG's, ABXs, steroids and still she is not better- I'm not sure what you have to lose with trial of SSRI?? It is all a risk- benefit situation. What are the risks, what are the potential benefits. Can always stop if you don't like what you see. I would urge you to not do this until an adequate trial of meds at one dose was tried for at least 6 weeks.

 

It has not been as scary as I thought it would be with my son:) I've found that the thought and anticipation of putting kids on new meds was always worse than what actually happened when we started. Would never know he was taking it except that is OCD has improved AND when I hear him teeth grinding at night

 

HTH, good luck with your decisions,

911RN

[kimballot]

PandasMcNuggets - So sorry you are going through this. I remember when you first came on the forum and you were very determined to get this fixed for your daughter. Clearly, you are leaving no stone unturned and that is what you have to do.

 

I also don't know if your daughter has PANDAS or not, but I could not disagree more with the notion that "the cause doesn't matter - we treat it the same". I was told this for 6 years and I ignored my son's symptoms for the last 2 years straight - only to find he had a cyst eroding his sinus bone and resting on his eye muscle. His only symptoms were PANDAS symptoms - not sinus symptoms. It took a PANDAS doc to look for the cause. I learned that we need to

 

1. Find and eradicate infection to whatever extent possible

 

2. Stop any autoimmune responses

 

3. Support the immune system to prevent further infection

 

4. Use CBT/ERP, parent training, special education and therapy to manage symptoms

 

5. Use psychiatric medications to alleviate long-term symptoms.

 

I truly believe that is the order in which we have to attack.

 

I did have a question about one part of your post... when you say:

 

Through bloodwork, her myco numbers were high and now have come down, her strep numbers were always below zero (WIERD) and now have climbed. They are now in the normal vs. subnormal range, but we are checking them today b/c the climbing numbers may be significant for her since they were so low before.

 

 

What strep numbers were below zero? Was it ASO / DNASE B or do you man strep pneumoniae?

 

I a just curious because s. pneumonaie would indicate an immune deficiency if low.

 

Keep up the fight and please let us know more about the NAC. My son just saw a new neuropsychiatrist who has had a few kids with PANDAS but not many. He is open to learning more and is doing some additional testing. If I learn anything new I will be sure to post.

[EAMom]

She was seen by Dr. Chugani who didn't rule out PANDAS, but wanted her to see a psychiatrist (a very renown one) to rule out "regular OCD." Two days ago we saw him and his office for an entire day. He would not rule out PANDAS either, but said "regardless of the cause, the treatment is the same"....SSRIs and CBT.

 

 

That "treatment is the same" dribble sure sounds like someone who is definitely NOT a PANDAS expert. grrr.

 

What antibiotic (and dose?) is your dd on now? Getting aggressive with long term abs should be a mainstay for PANDAS treatment (strep prevention, prevention of other infections, treatment of lurking intracellular strep, treatment of mycoplasma, immune moduating/anti-inflammatory properties, glutamate modulating properties...)

 

PS this is not to say that CBT or Prozac is totally inappropriate for PANDAS kids (in fact Prozac is probably also anti-inflammatory, and may help with symptoms, my dd is on a low dose herself), but for a doc to say that should be the ONLY treatment (and ignore the infection/auto-immune aspect of PANDAS), well that is really bad medicine IMHO...

Edited October 17, 2011 by EAMom

[Mary M]

I am not the author of this post but thank you for this thread...I so appreciate hearing everyone's responses.

Mary

from Michigan

[PANDASmcnuggetsw/fry/coke]

Thanks everybody for your replies. It is giving me much to ponder. She is on Augmentim 1,000 mg b.i.d. So a very high dose and this has been since the beginning of October. She has been on various ABXs continuously for almost a year and a half, except for one week to clear for the Igenex test. Usually, her dosing has been pretty high. And as far as her strep numbers being low, yes I meant the ASO / DNASE B. They were <20 and <70 recently which is a climb from her previous sub zero numbers.

 

We are visiting a naturopath tomorrow.

Kimballot, the sinus issue still haunts me. I need to get that checked out too.

I am still determined!

 

Hoping we can all slay the dragon and enjoy a meal together one day of....:-)

 

PANDAS McNuggets w/fry/coke

[cynditk]

If glutamate seems to be a significant piece of your puzzle there are many supplements you can try, like GABA, L-theanine, and some others. also you might consider consulting a homeopath.

 

We do it all- long term antibiotics, supplements, homeopathy, therapy, and now considering IVIG. we haven't yet done SSRI's but would if we needed to. We will start working on lowering glutamate and supporting methylation pathways soon as well.

 

I think a comprehensive approach is the best way to go to give these kids the best shot. I don't think there is any one right answer or protocol- they are very complex cases. Some folks have success with only one approach or two, but I think in our case we need many different approaches. We try everything that's out there and keep what works. Most docs think they have the answer, that their magic bullet is the right one, and from our experience its just not true-they may have a piece of the puzzle, but its the parents job to put all the pieces together for their child's situation-and they're all different- as best as they can.

[JAG10]

Mc/fry/coke- I don't know if this helps any, but for what it's worth..... My dd11 tried many SSRIs prior to PANDAS dx and tx. ALL resulted in behavioral activation EXCEPT prozac. But prozac didn't help her either. I just thought it was interesting it didn't activate her when even St John's Wart did. I'm sure there is a biochemical reason for this tendency, but I don't know what that is.