Reaching a Crossroads

[airial95]

For those of you who have followed my son's case, he's pretty clear cut PANDAS. Flares with strep, or when exposed to strep, mostly food-related OCD, ODD, ADHD and only a few mild tics.

 

He was 19-20 months at onset - 26 months old at dx (when we finally realized it wasn't the "terrible twos") The first year of treatment with abx got him back to around 80-90%, with the ADHD and residual OCD hanging around like learned behavior. That was going away with behavior therapy so we thought we were going along on the right path.

 

Our issue has been chronic infection, the longest he's been able to stop abx was 5 weeks last winter, before testing positive again, and he has even tested positive several times while on full strength abx - most recently 2 weeks ago.

 

In November 2011, after more than a dozen infections, we did a T&A, and it was nothing short of a miracle - COMPLETE remission of symptoms. The tonsil culture came back negative, surprisingly, and the ENT wanted to discontinue abx, Dr. M and our pediatrician thought that was too soon to stop entirely, but when the docs tried to lower his dose of Augmentin about 2 weeks post-op, one single tic started up, so he went back to full strength (unfortunately the tic didn't go away - but that was the ONLY symptom shwoing up.) Nothing else returned.

 

They kept him on the full strength Augmentin through the holidays, and Dr. M and our pediatrician agreed that we should try to take him off. Within in 5 days all of his symptoms were back - bedwetting, ADHD , OCD at mealtimes, everything, AND he was positive for strep again. He went back on full strength Augmentin - but unfortunately now the results were similar to what we had seen before. All the progress we made with the T&A was completely wiped out.

 

About 2 weeks ago - while still on the Augmentin, things started to flare again, took him in to the ped - and BAM - positive AGAIN!! Our pediatrician supplemented with 5 days of Azith, but also decided to try a different approach.

 

WARNING: I'm about to relay some information that my doctor told me about from a paper that he read - I don't know what paper, I haven't read it, and I'm sure I'm getting some critical points wrong - this is just my understanding of what we talked about!

 

He had read what he described as an "obscure paper" that discussed the inflammation issue in more detail, he mentioned something called CRP (I may have that wrong) and it being some sort of indicator of inflammation. For some reason, in PANDAS kids, this is showing up earlier than it is expected to, even before infection, so his thought is that if we actively try to treat/control the inflammation, when he does become re-infected, we may be able to prevent, or minimize the immune attack.

 

He suggested we run the rest of the abx (the 5 days of azith, and we were only about 6 days left on the Augmentin before the next refill) then stop, and start regularly dosing with Motrin for a couple of weeks. I asked about the side effects of long term Motrin use, and he wasn't worried about that for the time being, as long as we didn't exceed the daily recommended dosage for his weight.

 

Basically, his thought is if we can't beat the infection, let's try to fight the inflamation.

 

We talked about IVIG/steroids/PEX as potential avenues forward, but he confirmed my understanding that these are all things that can help stop the immune response, with is critical for most PANDAS kids, but it won't necessarily do anything to prevent him from getting strep again - which seems to be our bigger problem at this point.

 

The next week, we were in Dr. M's office meeting with Dr. Toufexis about my daughter's case and she asked about our son, I updated her on the 2 new infections, and our pediatrician's theory on the CRP. She was impressed that he had even read that paper - because it was indeed obscure, and thought his approach was interesting, and was anxious to see how it works out. Our son has his own appointment with Dr. M's office on March 7th, and based on the latest information, and 2 new infections post-op, we expect it to be an interseting appointment.

 

My son's chronic infection history is confounding everyone - there has never been even 1 blip, or issue with any of his blood work, the immunologist even called his labs "excellent" - so no one has a clue why he always has strep.

 

That being said, the Motrin protocol that we're using has been somewhat effective. We're giving it 2x day, in the morning, and late afternoon, we we're not even maximizing our daily dosage.

 

Last week, he began to show signs of being positive again, bedwetting and frequent urination being key tells for us. That started on Wednesday, and while we have seen some of the food OCD (which is therpay techniques are working for), and some occasional hyperactivity, other than the tic (which has never left since it came on post-op) - it seems to be very mild if it is indeed strep. (We're going in to the ped today for a swab - we wanted to wait through the weekend to see what's up).

 

My husband and I have began talking that we may think it's time to bring another expert on board. We like Dr. M, but she is conservative in her treatment approach, which was perfect for us when we were dealing with a 2 year old. We've been told by her office that it's likely after the 7th we'll be referred to the head of Immunology at All-Childrens, which we would follow through with.

 

Our pediatrician, by his own admission, has limited experience with IVIG/PEX, and has NO experience with them, or the use of steroids, for PANDAS treatments - all of his other cases have resolved with long term abx. My son is the weirdo!

 

Any thoughts, or suggestions on direction - considering chronic re-infection, not necessarily symptom control, is our biggest issue? Would IVIG or PEX help our son if he just gets sick again immediately following- even while on abx?

[MichaelTampa]

What type of immune work has looked so good? Has IVIG/PEX shown to be helpful when the immune work looks good? With chronic reinfection, seems like there is something wrong with his immune system or with his surroundings (other people chronically infected, home/school/daycare with mold, something else I'm not thinking of...). Have you done any lyme kind of decent lyme testing?

[thenmama]

Going along with the questions posted above about the immune testing-- did they test only the quantitative immunoglobulins (IgG, IgM, IgA, IgE) or quantitative and the 4 IgG subclasses? I ask about the IgG subclasses, b/c from what I've seen it seems that there are differing schools of thought on that in the field of immunology so if you land w/ a doc in the "subclasses don't mean anything" camp they may not even look at them (or may dismiss low values). Did they test for specific antibody deficiencies (SAD)-- meaning did they check titers for the things he may have been vax'd for? Seems like many PANDAS kids end up deficient for s. pneumoniae-- incl. my kiddo. Also, there's another test they can run to check T and B cell function-- wish I had my son's reports here to tell you the specifics of the labs our immuno ran, but she called me with the results and I haven't been back into her office yet to get a hard copy. Anyway, a SAD and/or T and B cell issues would indicate that even in the presence of normal immunoglobulins the immune system is not functioning as it's supposed to and can give the docs some more info to go on.

 

Another thing I'm wondering-- I know one of our peds at one point said something to me in passing about the other things kids may be carrying (naturally or otherwise) that would create a hospitable environment for the strep and/or allow it to "hide out" so even if the strep itself is not a "resistant" strain, it could be resistant b/c it can evade attempts to eradicate it. I don't really know much about this myself, but it stuck in my head as something to revisit and learn about at some point--since my's ds pattern of backsliding and strep recurrence is similar to your son's (though we know my ds has some significant immune deficiencies, and we've been focused on those as the cause for the chronic strep issues). Hopefully one of the parents with more biology mojo than me will be able to chime in on this if it is something worth investigating.

 

 

Our dd has made remarkable progress with IVIG, and she'd been suffering w/ undx'd PANDAS for years. Our ds has chronic, recurrent strep and has never been able to maintain the gains he's made with abx and steroids. He'll be having IVIG shortly and after that he'll have his tonsils and adenoids removed.

[LNN]

I know you've got to be beyond frustrated. You do everything right, you see the right docs, your kid is "textbook" - but he refuses to follow the dang script and get well the way he's supposed to. Know the feeling well.

 

You've been around the forum through all the lyme discussions, so you have enough info on that to decide whether to pursue. You're probably thinking - he keeps getting strep, so no need to look at lyme. And that may be absolutely true. My only comment on the lyme or any other infection - if your DS keeps getting infections, maybe some other chronic infection is keeping his immune system too busy or overworked to fight off the secondary strep infections. So yes, you have obvious strep. But maybe consider testing or looking for symptoms of some other infection that's keeping the barn door open. Have you ever run a C3d, C3a or C4a immune complex panel? These might tell you if the immune complexes are busy fighting chronic infections.

 

The second thought I had is in line with ThenMama but from a slightly different perspective. If you have tested IG subclasses or done other immune work that looks normal, you may want to look into other ways the immune system can be running at less than 100%. For my DS, it was pyroluria - a zinc/B6 deficiency where he takes in a decent amount of zinc/B6 but pees it out before it can be used. But it could also be some other nutritional deficiency that's keeping his immune system "under nourished". Like trying to fight a war without bullets. The tests that look at the guns say everything is working fine. But if your perfect gun doesn't have ammo, you still lose the battle.

 

The final thought is to draw yourself a Venn diagram. The urinary issues that I always assumed was a Pandas symptom wasn't related to Pandas. Urinary issues can also be seen with lyme, with thyroid, diabetes, etc. Other Pandas symptoms overlap with other diseases. So it's possible that your son has Pandas PLUS something else and that something else has been masquerading and getting lumped in with Pandas stuff. Stop and reconsider the way you've always looked at his symptoms. Maybe other things will be worth considering.

 

As for pex or IVIG, we've done them both. But if you have limited financial resources, IMO these aren't going to do the trick until you get to the underlying cause and address it. We use motrin every 6-8 hours for about 2 weeks at the peak of a flair. It helps a lot. But without the support of abx to fight an active/chronic infection, I'm not sure that all by itself it's going to be able to keep inflammation in check and limit the severity of a flair. If you decide to give this a trial, I'd also look into antioxidants - the things that help sweep up the mess caused by inflammation - the cell damage and death. We've had good experiences with milk thistle (also good for helping the liver which will be stressed from the motrin) and resveratrol (really like this stuff and it's available in liquid or pill).

[EAMom]

For those of you who have followed my son's case, he's pretty clear cut PANDAS. Flares with strep, or when exposed to strep, mostly food-related OCD, ODD, ADHD and only a few mild tics.

 

 

 

About 2 weeks ago - while still on the Augmentin, things started to flare again, took him in to the ped - and BAM - positive AGAIN!! Our pediatrician supplemented with 5 days of Azith, but also decided to try a different approach.

 

 

 

He had read what he described as an "obscure paper" that discussed the inflammation issue in more detail, he mentioned something called CRP (I may have that wrong) and it being some sort of indicator of inflammation. For some reason, in PANDAS kids, this is showing up earlier than it is expected to, even before infection, so his thought is that if we actively try to treat/control the inflammation, when he does become re-infected, we may be able to prevent, or minimize the immune attack.

 

He suggested we run the rest of the abx (the 5 days of azith, and we were only about 6 days left on the Augmentin before the next refill) then stop, and start regularly dosing with Motrin for a couple of weeks. I asked about the side effects of long term Motrin use, and he wasn't worried about that for the time being, as long as we didn't exceed the daily recommended dosage for his weight.

 

Basically, his thought is if we can't beat the infection, let's try to fight the inflamation.

 

 

I don't think stopping antibiotics and just addressing the inflammation will work.

 

Strep (and other infectons) is (are) a major contributor (trigger) to the inflammation in PANDAS. You need to get rid of (or at least control to the best of your ability) the strep if you want to control the inflammation.

 

 

In any other situation where there is inflammation you would control the triggers which cause the inflammation. Take for example, a kid with asthma. If this kid has triggers of cigarette smoke and cat fur, you would want to avoid these triggers, not just depend on keeping him on high doses of pred to control the symptoms while adopting fifty stray cats and smoking like a chiminey inside his house.

 

Have you tried Clindamycin?

 

I would just be careful. Since your son has a track record of relapsing once abs are stopped, and it may be difficult to get him back to where he was again.

 

Also, remember that antibiotics are also immune -modulating/anti-inflammatory. Azith. certainly is, that is why it is used long term in kids with cystic fibrosis. Our immunologist thought that was actually a big reason why daily Azith. helps our dd (after 1-2 years).

 

 

I also believe kids can have PANDAS without necessarily having an underlying immune def. I think many (most) PANDAS kids don't have a good (normal) immune system against strep. That isn't the same as saying their immune system is deficient overall.

Edited February 20, 2012 by EAMom

[MomWithOCDSon]

Also, remember that antibiotics are also immune -modulating/anti-inflammatory. Azith. certainly is, that is why it is used long term in kids with cystic fibrosis. Our immunologist thought that was actually a big reason why daily Azith. helps our dd (after 1-2 years).

 

 

I also believe kids can have PANDAS without necessarily having an underlying immune def. I think many (most) PANDAS kids don't have a good (normal) immune system against strep. That isn't the same as saying their immune system is deficient overall.

 

I will echo EAMom here. My DS was hyper-immune rather than immune deficient, and he was still helped by long-term abx (2 years).

 

I do think that inflammation has a lot to do with recurring symptoms, particularly BBB inflammation. Again, there's evidence that abx may help with that and while steroids have helped many (including us), it seems to me the side-effects of frequent steroid use could be far more concerning that the side-effects of abx.

[bulldog24]

Fwiw my son is textbook pandas and his bloodwork is normal including crp

[dut]

Sorrym don't want to hijack the link but-

 

LLM - Hi - you said your child's urinary issues aren't PANDAS, have you pinned down another reason?

 

Also an aside but with pyroluria, can taking zinc without sufficient levels of B6 cause vomiting or can that be caused by B6 deficiency other than caused by pyroluria? I've tested as compound heterozygote c1298a and c677t like my dd and have in the past but not now, vomitted when I took zinc supplements, about 1/2 hour after taking. It happened twice and could see no other cause. I'm wondering if I should consider testing teh kids for pyroluria too....

 

 

thanks..

 

Airal95 - my ds4 had a great response to 2 weeks of 2x a day ibuprofen. he wasn't at a 10 but was maybe a 7 on the scale lots of tantrumming, mean, defiant, hitting, punchin etc maybe some OCD/tic type spitting and some raging. We had, we think, got rid of the initiating infection and the ibuprofen seemed to allow his system to calm down. i think it's all BBB related for him but just my opinion. He was fine until re-triggered by another infection. however, we aren't dealing with recurrent infections like you seem to be....

Edited February 20, 2012 by dut

[Christianmom]

Fwiw my son is textbook pandas and his bloodwork is normal including crp

 

My son's CRP is normal as well. Actually it is very low (0.2 -- reference range: 0.0-4.9). Perhaps this is because inflammation that is exclusively in the brain will not raise the CRP (my son's only symptoms are neurological). I don't know. This is just a guess.

 

I would run the C3a/C4a, KPU (pyroluria as LLM mentioned), and possibly the TGF-B1 tests. All three tests are inexpensive and though they wouldn't rule out lyme or mold, they would at least point you in a possible lyme/mold direction. My son was ill for over a year before I had the C3a/C4a run. Dr. T was completely shocked when my son's C4a came back very high. If you do decide to run these tests, be sure to read the lyme board to see the right way to have them run. It is very important to run them through the correct labs. I can send you a PM about this if you want.

[LNN]

Sorrym don't want to hijack the link but-

 

LLM - Hi - you said your child's urinary issues aren't PANDAS, have you pinned down another reason?

 

Also an aside but with pyroluria, can taking zinc without sufficient levels of B6 cause vomiting or can that be caused by B6 deficiency other than caused by pyroluria? I've tested as compound heterozygote c1298a and c677t like my dd and have in the past but not now, vomitted when I took zinc supplements, about 1/2 hour after taking. It happened twice and could see no other cause. I'm wondering if I should consider testing teh kids for pyroluria too....

 

 

No, still no answer on the urinary issue. But it remains despite a 5 month remission of other symptoms. We will be doing thyroid testing in a few weeks, just prior to our next dr appt. It could simply be something he needs to "outgrow" but doc agreed to do some testing to make sure we weren't blaming Pandas or lyme for what could be a separate issue.

 

Not sure on your zinc question. Excessive zinc intake can cause nausea. But it depends on how much elemental zinc you took ,not sure if full or empty stomach plays a role, or time of day. Being that your heterozygous on C1298a, the B6 may be worthwhile even w/o zinc. You may also want to look into TMG/betaine (which I learned is different from Betaine HCL after buying a bottle of the betaine HCL ).

 

PM me if you want to discuss more, or we can start another thread.

[MichaelTampa]

Vomiting from zinc with food or zinc on empty stomach? Vomiting from zinc on empty stomach is fairly normal and thus it is not recommended that way.

[dcmom]

arial-

 

I am just going to throw a few thoughts at you, fwiw, since you and I have been her a while together

 

I am in total agreement that IMHO anti-inflammatory and immune modulation is KEY with pandas. For my kids, these things (steroids mostly, advil and pex, also) are what has given us pretty much 90% "normality". In our house, we need to address infection like any "kid", but then we need to go another step, to halt the autoimmunity. So far, so good, with this plan (fingers always crossed).

 

But- WTF? Why so much strep for your son? Is he actually not getting rid of it? Is it "intracellular"? Is it immune dysfunction?

 

My first thought would be a round of clindamycin. This is the drug of choice for carriers. We used it when my kids did get strep while on multiple abx, and it worked like a charm. It is a bigger gun abx, for sure, so I would only do a normal course- but it could be worth a shot.

 

Second- I would contact Dr Kaplan (strep expert). He is not a pandas believer, but I have actually spoken with him on the phone a few times, and he is kind, and willing to discuss strep in depth. He may have some insight for you. He may not.

 

I assume you have tested your household for carriers?

 

There is no scientific proof (I believe) that strep goes intracellular- but it might. Maybe this is the reason your son needs to remain on the antibiotics. Sammy needed to stay on the abx for several years before he could wean off.

 

Could the strep be covered by a biofilm? What would be the protocol to address this.

 

Lastly- I guess a thorough look at the immune system is in order. Could IVIG help your son fight the strep?

 

I do think a combo of keeping the strep in "check" even if you cannot erradicate it immediately, plus an anti inflammatory could be helpful.

 

You will figure it out for him- hopefully Dr M will have some insight....

[EAMom]

But- WTF? Why so much strep for your son? Is he actually not getting rid of it? Is it "intracellular"? Is it immune dysfunction?

 

My first thought would be a round of clindamycin. This is the drug of choice for carriers. We used it when my kids did get strep while on multiple abx, and it worked like a charm. It is a bigger gun abx, for sure, so I would only do a normal course- but it could be worth a shot.

 

Second- I would contact Dr Kaplan (strep expert). He is not a pandas believer, but I have actually spoken with him on the phone a few times, and he is kind, and willing to discuss strep in depth. He may have some insight for you. He may not.

 

I assume you have tested your household for carriers?

 

There is no scientific proof (I believe) that strep goes intracellular- but it might. Maybe this is the reason your son needs to remain on the antibiotics. Sammy needed to stay on the abx for several years before he could wean off.

 

Could the strep be covered by a biofilm? What would be the protocol to address this.

 

 

here's an article by Ed Kaplan re intracellular strep. Both Azithromycin and Clindamycin are mentioned. http://cid.oxfordjournals.org/content/43/11/1398.full

 

Arial, has your son ever been on longer term full strength Azith? I don't know how much he weighs, but I'm thinking 250mg/day for 2 mo. to see if that helps symptoms.

 

Or, Clindamycin is another good antibiotic that seems to have helped some PANDAS kids.

 

Or maybe a shorter course of clindamycin (a couple of weeks?) followed with long term Azith. I like the idea of IVIG as well, although it seems (from others on this board) that IVIG doesn't always "stick" unless underlying infections are also addressed.

Edited February 20, 2012 by EAMom

[airial95]

Wow! Thanks so much for the overwhelming responses!!

 

Let's see if I can cover some of the questions...

 

First - Lyme, we haven't looked into Lyme up to this point simply because he was classic strep. He's always cultured postive (even with no rise in tiiers), and no other infections seem to trigger him. But obviously at this point - we're going to be talking with the docs about anything and everything!

 

They have look at quantitavie and subclass, as well as SAD and T and B cell functions. They've also looked for all the usual culprits as well, including myco p. - eventhough we're typically strep only. On paper - he's the picture of freaking health!

 

We've gotten the whole family tested and treated - no carriers, although my daughter had 4 asymptomatic infections last year (which helped lead to her dx.) Dogs have been treated 2x with abx (our vet opted to just treat rather than do blood work b/c she said it may be unreliable). We all get swabed whenever either of the kids test positive just to be on the safe side as well.

 

He's been on full strength Azith, Cefidinir and now Augmentin - he's only 4, and until his surgery was underwieght thanks to the food related OCD (although our pediatrician ran a full metabolic work up to make sure there wasn't an underlying cause there either). Every time we have tried to stop or lower dosage he tests positive again. He has also tested positive even while on the full strength dose.

 

Like I said, the motrin has been helping, but sure enough the pediatrician confirmed strep again today. So he's back on Augmentin. The daily Motrin dosing has kept this episode at around a 4 compared to our usual 8-10's. So we're thankful for that - and for a pediatrician that doesn't think I'm Munchausens when I'm in there every 2 weeks!!

 

I think both the ped and I knew that without the abx he'd likely turn up positive rather quickly and that the Motrin alone wouldn't prevent that - but we were both just willing to try antyhing at this point.

 

I don't have copies of his labs here at the house, my hubby keeps the records at his office - so I'll have to see if they've looked at the other things you all have recommended to be loooked at - if not, I'll bring it up on the 7th.

 

I appreciate all the support, and keep the good advice coming!!! In the meantime, I'll be over on E-bay searching for plastic bubbles.

[eljomom]

thenmamma---wow, I thought you saw the same pandas doc as us. she wouldn't consider ivig without doing tonils prior. and in our case, we don't have repeated strep, large tonsils, etc. very curious. we were told there is no point doing ivig if there is strep hiding in tonsils because it would just come right back...

 

Going along with the questions posted above about the immune testing-- did they test only the quantitative immunoglobulins (IgG, IgM, IgA, IgE) or quantitative and the 4 IgG subclasses? I ask about the IgG subclasses, b/c from what I've seen it seems that there are differing schools of thought on that in the field of immunology so if you land w/ a doc in the "subclasses don't mean anything" camp they may not even look at them (or may dismiss low values). Did they test for specific antibody deficiencies (SAD)-- meaning did they check titers for the things he may have been vax'd for? Seems like many PANDAS kids end up deficient for s. pneumoniae-- incl. my kiddo. Also, there's another test they can run to check T and B cell function-- wish I had my son's reports here to tell you the specifics of the labs our immuno ran, but she called me with the results and I haven't been back into her office yet to get a hard copy. Anyway, a SAD and/or T and B cell issues would indicate that even in the presence of normal immunoglobulins the immune system is not functioning as it's supposed to and can give the docs some more info to go on.

 

Another thing I'm wondering-- I know one of our peds at one point said something to me in passing about the other things kids may be carrying (naturally or otherwise) that would create a hospitable environment for the strep and/or allow it to "hide out" so even if the strep itself is not a "resistant" strain, it could be resistant b/c it can evade attempts to eradicate it. I don't really know much about this myself, but it stuck in my head as something to revisit and learn about at some point--since my's ds pattern of backsliding and strep recurrence is similar to your son's (though we know my ds has some significant immune deficiencies, and we've been focused on those as the cause for the chronic strep issues). Hopefully one of the parents with more biology mojo than me will be able to chime in on this if it is something worth investigating.

 

 

Our dd has made remarkable progress with IVIG, and she'd been suffering w/ undx'd PANDAS for years. Our ds has chronic, recurrent strep and has never been able to maintain the gains he's made with abx and steroids. He'll be having IVIG shortly and after that he'll have his tonsils and adenoids removed.