feeling alone - anyone else w/ a PANS flare with every cold?

[wisdom_seeker]

My DS 16 just got a new PANS flare this weekend. This will be his 8th cold in the last 8 months. Since he had his first (obvious) PANS symptoms in mid-August, he's had a cold and exacerbation about once per month.

 

Does anyone else on this forum have that? I'm feeling really isolated.

 

And worried -- he's already taken 8 weeks of Augmentin, NSAIDs, Neurontin, SNRIs, (and trazodone (for sleep), and prednisone. Prednisone 60mg helped partially, but it's a dangerous band-aid.

 

He finally just got down to 5 mg prednisone, able to shower, began pet-sitting on Saturday, walked a dog for a mile, and then on Sunday his anxiety was sky high again, getting out of his pjs (much less out of the house), or showering are all impossible. So we upped the prednisone again to 40 mg (x3days), but so far there's no difference. He's discouraged, listless, angry. Spends his days marathon-watching Star Trek: Voyager to keep his anxiety down to a dull roar, to keep from going crazy.

 

Would IVIG even help? In PANDAS kids, the key to getting benefit from IVIG seems to be to keep the child from getting another strep infection, but no matter what DS and I seem to do he gets a new cold -- and a new PANS flare -- every month.

 

Any ideas for who to talk to, what to do?

 

Wisdom_seeker

 

PS. He may have a partial IgA deficiency ( IgA = 57.1 and 38mg/dL at age 8 and 13 respectively), with completely normal total IgG (914 and 1040). Would IVIG even help reduce the odds of viral infections?

 

PPS. I've thought of home-schooling; he's barely at school due to the school anxiety, but most of his colds seem to have been brought in by my DH.

 

 

[LNN]

A few thoughts - first, viruses can cause Pans flares - doesn't have to be strep. Second, you may want to check your husband to make sure he's not a strep carrier. What his body reacts to as a "cold" could be somewhat asymptomatic strep. Third, when kids flare on a monthly basis, it can sometimes be Lyme. Lyme spirochettes have a 3-4 week life cycle and a significant number of Pandas kids have later been diagnosed with lyme (in addition to a strep infection). I swore for two years my son was "classic Pandas" but actually had Lyme and once we treated that, he was finally able to get and stay healthy.

 

My experience with IVIG isn't that it's to prevent strep infections. Rather, it floods the immune system with "well-behaved" or "properly educated" antibodies pooled from thousands of donors and that flood overwhelms/overrides the body's own antibodies which are prone to attack the self. It's kind of a "peer pressure" that stops your own antibodies from launching the autoimmune response. However, it does not prevent future infections and does not prevent auto-antibodies from being produced by your own body in future infections. It doesn't seem to be a "one and done" treatment. IVIG made my son way worse for 10 weeks because it ramped up his immune system against the undiagnosed lyme and produced a killer herxheimer reaction.

 

If you're leaning toward IVIG, please have your doctor screen him for current infections such as lyme, mycoplasma and common viruses. Standard lyme tests are highly unreliable because they omit two markers that are definitive for lyme (these markers were eliminated when a lyme vaccine was introduced and the labs didn't want people getting false positives due to having been vaccinated. However, the vaccine failed and was pulled after 2 yrs, but the labs have never resumed testing for these markers. You'd need to use a lab that still tests for these two markers)

 

As for homeschooling - I reluctantly decided to homeschool my daughter this year due to mold in her school building. It's been a 90% positive experience for both of us and a Godsend in terms of helping her deal with medical issues without the pressure of school attendance, 504s and administration not understanding our reality. I was intimidated by the idea but it was a very good decision for us.

[BeeRae22]

You aren't alone,... After 2 years we were just finally down to 1 abx (zith) and here we are approx 4 weeks later, adding another abx in because dd(10) is flaring again from ds(8)'s strep infection. Ugh. I'm so discouraged. Interestingly though, dd didn't get "colds" for the two years of treatment, not until she was almost back to baseline.

 

This morning started with our 5 pd doggie being sick, ds spitting his food out while eating (OCD), and dd being aggressive and "edgy"..... Trust me, You are not alone.

 

Llm (above) is very knowledgeable.... And I agree with her that your son's pattern kind of sounds like Lyme reproductive cycle. Have you tracked the pattern?

 

Best wishes.....

[wisdom_seeker]

Hi Lim and Beerae --

 

@Beerae22: best wishes for your family's recovery as well. PANS stinks. Especially when you have multiple little ones miserable and simultaneously needing you. My hat off to you.

 

Thanks to both you and @Lim re: the Lyme. I'll try to reconstruct the dates. He hasn't gone more than a month between, that's for sure.

hmm.....Is Lyme or one of the co-infections known for sudden onset muscle-aches?

 

This last January, after DS was ill for over a month with one sinus infection after another (and the 2nd one unresponsive to Omnicef), DS suddenly came down with a miserable case of flu-like muscle aches and malaise (but NO fever). Started a day or so after he switched to Biaxin (which amazing against the sinus infection), and lasted for at least a month.

 

Initially the muscle aches and sensitivity were awful enough that he couldn't sleep well, couldn't even tolerate flannel sheets, couldn't talk, laugh without pain. And yes, included brain fog, fatigue, unusual anxiety etc.

 

Now that you mentioned Lyme, I wonder if that could have been a Jarisch-Herxheimer reaction. However, a Herx response would have started w/in hours of an effective antibiotic, right? And would only last for a few days, wouldn't it?

Not a month.

 

On the other hand, since DS was in such pain and we'd suspected Biaxin, we stopped Biaxin after 3 days or so and switched to Augmentin. Didn't help the pain, unfortunately, only made him recover a lot more slowly from the sinusitis. And in February, as he was getting better, he developed school anxiety and PTSD (from reading about the Holocaust). And that's the last he was on antibiotics till re-starting Augmentin this Nov. to attempt to treat the PANS.

 

 

 

PS. But even Lyme kids get plain colds and sinus infections, right?

 

I think this December's infection likely was a cold, as DH got a cold from DH's boss and family friend (who ought to know better than to come to our PANS household with a fresh cold)..... It would have gotten to DS way of DH, who believes that I'm paranoid insane for asking DH to still wear a face mask around DS, (because, "as everyone knows, you're only infectious with a cold before you show symptoms, and certainly not 5 days after"). This even though there are lots of cold viruses with different patterns, but I'm no MD, (and even if I was, DH would still need to hear it from a more credible MD). End of venting.

 

In great news, I just found out tonight that (pending medical review) our insurance will pay for most of the Cunningham panel. (we'll still wind up paying it all, as we've got a $2,600 deductible on our BCBS, but at least it'll count toward the deductible.)

[LNN]

At the top of this forum, you'll see a pinned thread of helpful lyme posts. I'd encourage you to read through them. You're quickest answer would come from doing a $200 basic Igenex panel. The Cunningham panel was helpful for us (both my kids did it in the early days of the research trial, before it was a commercial test). But the markers can be elevated from more than just strep antibodies. Lyme kids can also show high markers.

 

Certain strains of strep carry an M protein on the outside of the cell wall that the body's immune system reacts to. Very similar M proteins exist on the outer walls of certain cells in the heart and the brain. In Pandas, the immune system attacks these "self" cells in a case of mistaken identity - molecular mimicry. Lyme spriochettes also have a similar M protein and some of Cunningham's research in the 90s talks about this, tho it wasn't the focus of her papers. So high Cunningham makers can tell you if you're dealing with an autoimmune response but it isn't a response solely caused by strep. And that's what the new research paper from Columbia Univ confirms that other invaders can trigger that same response. Do the panel if you think it will help get your DH on board. Just know that it will confirm an autoimmune issue but it won't confirm the trigger.

 

And while I'm not a doctor either, my understanding was that viruses spread through mucus and human fluids. So you'd be contagious for as long as you're sneezing or coughing or ejecting virus germs from your body. Your DH may be thinking of certain bacterial infections where you're infectious prior to symptoms. But even then, for a Pans family, I don't think you can count on a normal immune response and need to take precautions until you're sure the infection is gone. You can check with your Pans doctor, but that's my understanding.

[LNN]

BTW - herxes can last for weeks, not days. You may want to read "Cure Unknown" by Pam Weintraub for a better lyme overview. Great book and easy to read. This is also a great - but long - read on biofilms, which are a big problem in sinuses. http://bacteriality.com/2008/05/biofilm/

[wisdom_seeker]

I've also read the reference on biofilms, thanks. Most of it make sense, fits with other things I've read. And our family allergist's recommendation of sinus irrigations with a couple of drops of baby shampoo or other surfactant as a way to break up the biofilms.

 

Wisdom_seeker

 

 

This is also a great - but long - read on biofilms, which are a big problem in sinuses.http://bacteriality....008/05/biofilm/

PS. For full disclosure, though the biofilms article was well-done, I disagree with the Tx, the Marshall Protocol. This aside is not relevant to what you said, but more for anyone else who goes to that website. Vit D is so important to immunity, restricting it in other illnesses could be disastrous. Marshall, PhD, may be brilliant, but he's not an MD, and needs published clinical data to support his claim.

 

Even I, a non-MD, was able to collaborate with MDs to get a pilot grant and conduct a clinical trial (in breast cancer Tx & decision-making, not PANS).

 

In contrast, Dr. Marshall founded an institute, and is associated with a fine med school -- if he can't be persuasive enough with the science to get a pilot approved by the IRB, or to have an MD collaborator, I'm very suspicious.

 

At a minimum he should be able to get a prospective observational, correlational study that follows folks with autoimmune illnesses and prospectively tracks symptoms and the two Vit D levels. Hopefully also find a direct way to see if the Vit D receptor is blocked, like he says.

 

Despite his institute and med school association, Marshall hasn't done this foundational work, nor what's really needed -- a solid prospective clinical trial of the two Vit D levels and their association with symptoms on his protocol, (done in illnesses other than the sarcoidosis). Sarcoidosis includes a bad VitD metabolism feedback loop, as he describes. But he's generalizing to other illnesses).

[LNN]

Agree with you 100% about not supporting the Marshall protocol. I don't believe in starving the patient to starve the bug. I just like the explanation of films in the link.

[jan251]

Despite his institute and med school association, Marshall hasn't done this foundational work, nor what's really needed -- a solid prospective clinical trial of the two Vit D levels and their association with symptoms on his protocol, (done in illnesses other than the sarcoidosis).

 

This is interesting to me. My ds has a low Vit D but a high Calcitriol and also the VDR taq mutation (homozygous). Supplementing vitamin D never seemed to help, though he has so many things going on, it's difficult to near impossible to tease it all apart.

Edited January 3, 2016 by jan251