Worried_Dad

Hi, Fixit: It's actually our son who has PANDAS. He's doing great after 9 months of augmentin XR! Here's a recent post on his condition: http://www.latitudes.org/forums/index.php?...amp;#entry70871.

These are the posts that make my day, Amy. Thanks for sharing!

Hi, norcalmom: We did 3 rounds of IVIG with Dr. K. They helped, but the improvement didn't last. For our son, the key has been the "Saving Sammy" dose of augmentin XR, which he's been on for about 9 months now. The last 9 months have been the most sustained period of progress since this nightmare began in Spring 2007. I'd love to believe he'll grow out of it with puberty, but we're not counting on that. We recently found out that our entire family has elevated ASO titers, so that explains why he kept getting sick again after IVIG. We're not going to drop the abx dosage until we're sure the rest of the family is strep-free!!!

Last Saturday was our PANDAS son's 14th birthday. In a way, it made me sad to think about all the time PANDAS has stolen from his childhood over the past 3+ years (although I realize other poor kids have suffered much longer). Recent birthdays have not been kind to him. On his 11th birthday, he had his 1st "seizure-like episode" and spent the evening in the local ER. On his 12th birthday, we had just discontinued abx per local doc's advice (based on the official NIMH guidelines for PANDAS) and he was spiraling downhill again. On his 13th birthday, he had just suffered his 3rd and worst exacerbation and could not touch anything due to contamination fears, could not eat, was spraying everything (including his own arms) with Lysol until it dripped all over. Total torment. So last weekend was complete joy for him and our whole family! He ate like a horse, played outside with our puppy and the neighbors, went inline skating around the neighborhood, played computer and video games, went to a movie with me and his brother. These are such simple things... but they were all utterly beyond imagining one year ago. He's not 100% yet. We know we have major challenges ahead: getting him back to school after a 3-year absence, getting the rest of our infected family's ASO titers down, reducing his abx dosage eventually. But life is so much better for him - and all of us - that it at times feels miraculous! Needless to say, my wife and I were grinning from ear to ear. Our PANDAS son had a truly HAPPY birthday for the 1st time in 4 years!!!

I totally agree!!! Our son was originally diagnosed with ARF / SC. Initially, he had migratory joint pain, muscle weakness, difficulty walking that transitioned (after 6 weeks - classic SC time lag) into seizure-like episodes where his limbs jerked uncontrollably. No OCD at all in those early days, although we did see the emotional lability and personality changes. At that time, many local docs disputed the SC diagnosis because our son's movements were episodic and not continuous. Over time, they became more tic-like as well. But it always frustrated the heck out of me that docs "threw the baby out with the bathwater": "Your son doesn't have SC because his movements are not classic choreiform and are not continuous, therefore all of his symptoms must be psychogenic / psychiatric." Huh?!? The symptoms emerged out of nowhere after a high fever; his ASO was elevated (as well as RF and ANA, signs of infection and autoimmune response); he definitely met the "modified Jones criteria" for ARF; he was still spiking intermittent fevers (prior to abx); he met every criterion for the diagnosis except his movements were episodic instead of continuous. Argghh! Then after his long-term abx were stopped, he had his "exorcist explosion" of PANDAS symptoms: urinary frequency, anorexia, massive OCD, ODD, wildly dilated pupils, rages, crying jags, suicidal talk, a verbal tic added to the resurgent motor tics. And at that point every local doc just referred us to the psychiatrists. What I believe - and what Dr. K and Dr. L both told us during phone consults about our son - is that this is all part of a spectrum of post-strep autoimmune disorders that includes ARF, SC, and PANDAS. In fact, Dr. L actually told us that she thought our son belonged "closer to the SC side of the spectrum" based on his case history. Considering that ARF / SC is a well established, non-controversial disorder, it amazes and appalls me how quickly the PANDAS diagnosis - which overlaps SC so obviously - is thrown out as "preposterous." I'm no MD... but that seems utterly irrational to me. I agree, especially with my dd's 166 CamK..and if you extrapolated the numbers in Dr Cunningham's research to reflect the markedly smaller # in the SC subset wouldn't the tail for SC go much lower than the table shows? The neurologist over the week end who saw my dd in the ER had no problem treating her if she had SC but that PANDAS dx was just too iffy for his taste.

Why did Dr. K reduce the augmentin dose and switch from XR to regular? For our son (14), the higher dose of XR has been a lifesaver! Per EAMom, ibuprofen also seemed to help moderate our son's symptoms during exacerbations. So sorry for your ds and family. Our son was similarly despondent and suicidal at several points when no treatment seemed to be working. Hang on - with the right abx and IVIG, things will get better!

Hi, Isabel: Any way you slice it, that ASO titer level is well above normal for an adult. That's certainly cause for concern. And I don't understand why so many doctors assume that an elevated ASO without obvious pharyngitis symptoms means "no active infection": that's not a safe assumption. Strep can hide out in lots of places other than the throat. The NIH MedLine info about the ASO titer test ( http://www.nlm.nih.gov/medlineplus/ency/article/003522.htm ) lists as the very 1st item under "What Abnormal Results Mean" - Active streptococcal infection. I think for anybody living with a PANDAS child, it's absolutely essential to assume an active infection and treat aggressively with abx, then monitor the titers over time to confirm that they're coming down. I'm in the same boat! Had an ASO of 303, did a month of zithromax, and have to go in next week to have my ASO re-checked. Dr. K advised us that our whole family needs to do this (we all tested high on ASO) to protect our PANDAS son from exposure. Best of luck!

I do think his stance on this is evolving. Our son was one of those on the "standard low prophylactic dose" of 500 mg augmentin once a day, and it didn't work. But - based on our son's desperate situation - Dr. K was willing to prescribe the "Saving Sammy" dose and has supported the continuation of that dose for our son over the past 9 months. I think our son's dramatic response has made a believer out of Dr. K that at least some kids need that higher dose. Dr. K has told me several times that he learns something new from each patient. I wish to heck more doctors had that attitude!

Okay, the plot thickens for our family, and I wanted to share this. Iowadawn, our family's titers are nowhere near the levels you're dealing with... but we have now all tested positive for recent strep infectiion via ASO titer. Every member of our family tested above the normal range, despite none of us ever having a positive rapid or extended throat culture over the past 3 years. So here's the summary. Dad (me) -> ASO = 303 Mom -> ASO = 241 Brother (10) -> ASO = 334 Brother (4) -> ASO = 597 Per Buster's past posts, the titer trend is more meaningful than absolute numbers... but, still, every member of our family had what the doctor and the lab consider a positive result. None of us have been diagnosed with strep and none of us have had any of the "classic" symptoms of pharyngitis. What the heck is up with that?!? Made me think of SF Mom and her children's infamous "anthrax playdate" where all the kids developed post-infectious strep-related disorders afterward. You scientists in the crowd, what's going on here? Is there some specific, really nasty strain of GAS that is super-hard to eradicate and triggers a severe autoimmune response in vulnerable families? Is this a "perfect storm" of strep virulence and genetic susceptibility? Trying like heck to understand what we're fighting here. Our PANDAS son is doing great (thank god) while he's still on 2000 mg of daily augmentin XR, but he can't continue that dose forever. I'm a bit worried about how to clear our entire family so we can safely consider lowering the XR dose in the future. And - here's my paranoia showing - I sometimes see PANDAS symptoms in our 10-year-old that make me wonder about whether he's in the early stages, too. What do you all think?

Tried to respond to your PM but it wouldn't let me. You must be popular!

Ah, the fragrant aroma of Eau de Minnow. You're really stoking my appetite, Mom!

Our ds13 had this as well: a relentless burping tic that drove my wife and I nuts! He swore he could not control it, and it was ubiquitous during exacerbation. As he recovered, it gradually diminished and disappeared. I think these poor kids really do have tics that are unusual but which they are powerless to stop. Our ds's screeching vocal tic was even more nerve-rattling than the burping, and I know there are lots of other kids on the forum with a wide variety of strange vocal and motor tics (coughs, sniffs, snorts, repeated words or phrases, elaborate hand and arm movements, etc.). Lauren Johnson's sneezing tic is another striking example! I don't know how best to handle these. My wife and I just tried to ignore it, because bringing it to our son's attention always seemed to make things worse.

Truer words were never spoken. Beautifully said!

That... was... AWESOME!!! How the heck does she do that without an oxygen tank standing by?!? My wife is still laughing. And I think she's memorizing it for future use...

Wow - fascinating! This is at about the same time (1918) that the encephalitis lethargica epidemic erupted around the globe, especially in NY area. I'm reading the book Asleep about this "forgotten" epidemic - only partway through it. But it's amazing: this was at a time when neurology and psychiatry were still combined into one discipline ("neuropsychiatry"). The experts back then did not doubt for a moment that this outbreak of severe, PANDAS-like illness was a direct result of an infection that caused inflammation and damage to the basal ganglia, that the physical and mental symptoms were inextricably intertwined. My, how far we've come with all this specialization in the past century... sigh.

I think there's a very special place in Heaven reserved for PANDAS moms. It's completely stress-free, where you have nobody to worry about and nobody to second-guess you and nobody to blame your child's traumatic illness on your parenting style. This special place is also the entrance gate for doubting doctors who desperately want to get in. And you, the PANDAS moms, get to smile at them with condescending smiles and say, "I don't believe in death, it's just a psychological problem. If you just believed you were alive, you'd be fine. Until you can bring me the results of five double-blind, peer-reviewed studies proving that you're dead, I'm afraid we can't help you and you're stuck in Hades." Payback is heck, ain't it?!?

Our son's been on a "starter dose" of strattera (25 mg) for a few weeks now. It does seem to have helped his focus: he's doing better with homework and is remembering on his own to take his meds 3 times a day. Before the strattera, we had to always remind him about the meds, and homework was a major struggle. So we're cautiously optimistic. So far, so good... but it's early days!

I think this is one of the hardest, most devastating things about PANDAS. It drains the entire family, and the uninitiated really don't understand how all-consuming it is to take care of a PANDAS child in the midst of exacerbation. My wife was already a stay-at-home mom by choice, but caring for 3 boys (now 13, 9, and 4) was overwhelming with PANDAS in the picture. I've been on intermittent FMLA leave for 3 years now and have missed lots of work. We put our youngest in full-time daycare even though we can't deduct the expense on taxes (since my wife doesn't have a "job" according to the government... like to see an IRS auditor try to take care of a PANDAS kid!). Wish I had better answers. My wife and I have been able to trade off and "cover for each other" during the worst times, when it felt like we were hanging from the cliff by our fingernails. It's critical to have a support system, for sure. If you have close family or friends who can help out, that's huge. On the positive side: with the right treatment, it gets better. Our PANDAS son is 90% better than he was 6 months ago, and it is an immense relief for our entire family! Some semblance of normality is starting to creep back into our lives... although the healing process for all of us will take some time.

Just finished this - so well written, poignant, haunting. I think Ms. Weintraub did a nice job of presenting opposing viewpoints with scientific objectivity, although her own family's experience makes it pretty clear which side she believes has most of the story right. So many parallels with the PANDAS experience. In the medical community, seems like the ivory-tower academics who rarely get into the trenches with suffering patients exert all the control over "standard of care." Makes me so damned mad: how many times does this pattern have to be repeated?!? Wouldn't wish this on anybody... but I think some of these close-minded skeptics in the Lyme and PANDAS communities need to see these disorders firsthand, when a friend or family member is afflicted, to overcome their "ideological inertia" and make them see the light!

Yep, we experienced the same thing with our PANDAS son on the prednisone burst - amazing improvement that disappeared almost immediately after the burst. That accelerated our move to IVIG as well.

Cool - a Cunningham test-results pool! Who needs the NCAA basketball tournament?

Welcome back, Lynn. So happy to hear that Lauren's doing better. It's nice to hear your encouraging update!

Great to hear that things have turned around, Mom. Hope that trend continues!!!

Wow - is that Dan Geller at Mass General of "Saving Sammy" fame? And he wouldn't prescribe longer-term, higher-dose augmentin? That's shocking, given his support for Beth Maloney's work and the PANDAS Foundation. Such a shame that the augmentin causes your ds so much stomach discomfort. Maybe new doc will prescribe high-dose, long-term zithro or another useful abx?

Okay, this is eerily familiar when you mention "eye ache." We had a young boy in our neighborhood (8 at the time) who complained to his parents of pain / pressure behind his eye. Family doc couldn't explain it. Then one night, it came to a head, and the pain became so excruciating that they rushed him to the ER when they noticed that his eye actually seemed to be bulging somewhat. The hospital ended up doing emergency surgery on him. Found a raging infection in the sinus cavity that was literally expanding to the point that it was on the verge of bursting. They said if they had not operated to relieve the pressure, the abscess could have burst with potentially lethal results. After the boy was stable, the surgeon told the mom that they had a young girl with the same problem but had lost her when the abscess burst before she received medical attention. Very scary. The mom told us that the doc said it was strep... but she did not recall what strain, or if the doc even said. So don't know if it was GAS. But this happened around the same time our PANDAS son first became ill. The timing has always made me wonder....