Another story like Sammy's..

[faith]

marci,

thanks for posting. In reading your story, I'm guessing your were lucky to have someone diagnose PANDAS asap from someone who KNOWS about it. The furstration many have here is that there seems to be only a select few who buy into this or who are even aware. I live in NY, one would think there are no shortage of medical practioners who are well versed in what is going on in medicine. I'd say from 1999 when Swedo was doing the research, and 2001, when your child was ill, as well as Sammy, I'd say something is very wrong if parents have to do the research and diagnose there own child. My son's doctors are all aware of his tic symptoms (ped, DAN doc, ped neurologist, Infectious Disease doc whom we approached first, but due to low titers, "no indication for dx of PANDAS at this time", was the end result.) I admit I did not talk of the other symptoms such as OCD, etc. with most of the doctors, because by the time he showed obvious OCD, I had pretty much closed the door on PANDAS and did not actively persue it again until recently. (I admit, I was probably wrong, but I just assumed 'tourettes', but in my defense, no one doctor ever entertained the idea, even tho I brought it up.) Also, the ped neuro that I go to was aware of the tics AND OCD, as I told them about it when I was there to obtain a letter for school. So his letter of dx states, "tics, OCD, and anxiety"......DOY! That office did not ask me any other questions or suggest titer testing, altho I did request they add ASO titers to a blood testing (that I requested), but again low, so no one talked about it further. They didn't question any of my son's other symptoms to see if it may be something to look into. I don't say they have to diagnose on the spot, but at least put it out there.

 

So my point, and others here is a valid one......I'm sorry, but my belief is that some in the medical profession are just 'getting them in and getting them out', 'here's your Rx, have a nice day"......I truly beleive that cases that take a little more effort on their part is probably not worth their time, ($$). Let's face it, how many doctors who are not exactly "specialists" have the time to mull over one patient's medical history and devote enough time and energy to figuring out what the problem could be. They are trained in "medicine", that means handing out ....yea.....medicine....meds.....pharmaceuticals. ..... its the name of the game....

 

Marci, is the doctor who treated your child still active in treating PANDAS? I don't we've heard his name mentioned before.

 

Faith

[KeithandElizabeth]

We are also on Zyrtec What does anyone recommend for allergies other than Zyrtec?

 

elizabeth

[EAMom]

Hi Marci,

 

thanks for posting.

 

I whole heartedly agree with peglem...I also have a big issue touting ASO/anti-dnse b a "test" for PANDAS. A throat culture should be run first and foremost. I think titers are fine thing to run if the throat culture is negative, but you really have to take them with a grain of salt. They can be useful if you are looking for prior evidence of a strep infection, but in 37% of kids who have had strep (including PANDAS kids), both of these values will be low/neg (and I'm not just talking about carriers, not that a strep carrier can't have PANDAS). Unfortunately doctors don't understand this and too many on this forum have been told their kid doesn't have PANDAS b/c their strep titers are low...in other words, the test backfires, actually does more harm than good, serves as an excuse for docs to say "your kid doesn't have PANDAS".

 

At age 7.5 years, my dd had PANDAS severe enough to require 6 days of hospitalization (malnutrition, acute food refusal, anorexia nervosa). She also had emotional lability, rages, bi-polar behaviors, suicidal statements, major depression, compulsions, separation anxeity, social anxiety, mild tics, and OCD (but not the typical handwashing etc that makes you think of OCD). This all started with a FEVER (we later learned that several kids in her class had strep). In the hospital, her throat culture was positive for strep (2mo. after FEVER, onset of behavior change). Her perianal cutlure (we noticed blood in the toilet) was positive for strep. Her younger sister was positive for strep (an assymptomatic carrier we assume). (BTW Nobody told us to run these cultures. We had to request them.) Obviously, we had strep coming out of our ears. They also ran an ASO/anti-dnase b (not our request, the doctors idea) ....which were low/normal. Unbelievably, B/C of the low titers, we had doctors telling us our dd didn't have PANDAS.

 

BTW, we only learned about PANDAS b/c we called psychiatrist after psychiatrist trying to find someone willing and qualified to treat our dd...psychiatrist #21 suggested we check her for strep (and we then googled).

 

Please read Buster's Aug 24 and Jan 11 posts http://www.latitudes.org/forums/index.php?...ry29305....lots of well-researched information about ASO and PANDAS.

 

I should also add that the best "true diagnostic test" for PANDAS currently available is that run by Dr. Cunningham (Univ. of Oklahoma)....CaM kinase ll and anti-neural anti-bodies. Many on this forum have participated in her research study and the results do seem to hold true (even for those with low ASO/anti-dnse b ).

[marcicooynhc]

I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again.

 

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission.

Marci Lichtenwalter

Thank you for coming here to respond. I hope you were not offended by what I posted. I do appreciate what happened to Jamie and Sammy and the turmoil of their families in getting help. WONDERFUL that antibiotics made such a difference for both boys. The problem that many of us with PANDAS kids are having is that doctors very frequently believe that low ASO & AntiDnase titers rules out PANDAS, even in the face of positive strep cultures...and our children are denied treatment because of it. I'm so glad those high titers enabled you to get treatment for your child....but, while high titers are diagnostic for a prior strep infection, they are not diagnostic for PANDAS and that is where my angst comes from. -Peggy

In my opinion, any physician that would deny a child treatment in the face of a positive strep culture is taking that child's life into their own hands and destroying it. These physicians must be held accountable for their irresponsibility and should not be in the healthcare profession. A physician MUST be willing to investigate all avenues. There is more and more information on the PANDAS frontier. WE NEED the medical community's support WE NEED one goal...TO ERADICATE PANDAS.

Marci Lichtenwalter read more on www.jamiesstory.wordpress.com

[peglem]

I guess my kid could be the poster child for what happens when PANDAS starts early in life and isn't treated.....because when that happens, its definitely not as simple as antibiotics! Don't get me wrong, PANDAS needs the press...just that titer checks and abx may be the answer for some kids, but so many need much more aggressive treatment and those of us who have been dismissed because of low titer counts...kinda feels like that's happening all over again.

 

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission.

Marci Lichtenwalter

Thank you for coming here to respond. I hope you were not offended by what I posted. I do appreciate what happened to Jamie and Sammy and the turmoil of their families in getting help. WONDERFUL that antibiotics made such a difference for both boys. The problem that many of us with PANDAS kids are having is that doctors very frequently believe that low ASO & AntiDnase titers rules out PANDAS, even in the face of positive strep cultures...and our children are denied treatment because of it. I'm so glad those high titers enabled you to get treatment for your child....but, while high titers are diagnostic for a prior strep infection, they are not diagnostic for PANDAS and that is where my angst comes from. -Peggy

In my opinion, any physician that would deny a child treatment in the face of a positive strep culture is taking that child's life into their own hands and destroying it. These physicians must be held accountable for their irresponsibility and should not be in the healthcare profession. A physician MUST be willing to investigate all avenues. There is more and more information on the PANDAS frontier. WE NEED the medical community's support WE NEED one goal...TO ERADICATE PANDAS.

Marci Lichtenwalter read more on www.jamiesstory.wordpress.com

 

Well, they treated the strep...just not the PANDAS, because they thought the low titers meant they were negative for PANDAS....Its a bit of confusion in the medical field over what the titers mean...its not that the doctors are not wanting to help our children (well most of the time), they just don't have the right information. You told Jamie's story the way it happened for him, and its good to get that story out there. My fear is that it may reinforce the notion that those titers are a test for PANDAS.

[thereishope]

From your mouth to God's ears.

 

Now if doctors would realize THEY are not God.

 

 

In my opinion, any physician that would deny a child treatment in the face of a positive strep culture is taking that child's life into their own hands and destroying it. These physicians must be held accountable for their irresponsibility and should not be in the healthcare profession. A physician MUST be willing to investigate all avenues. There is more and more information on the PANDAS frontier. WE NEED the medical community's support WE NEED one goal...TO ERADICATE PANDAS.

Marci Lichtenwalter read more on www.jamiesstory.wordpress.com

[pixiesmommy]

ASO titers will be low if you have had CHRONIC strep infections, simply due to the fact that your body is no longer mounting a defense, to put it rather simply. Correct?

 

My daughter has had unexplained fevers since 16 days old, unexplained irrational/manic/OCD/rage behaviors periodically through her entire childhood, correlating to the bouts of fever. At age 7, she began having tics after 1 bout of strep that we have documented. At age 8, she started having paranoid episodes and appeared as if she were bipolar and tics increased in severity after 3 documented bouts of strep. We saw doctor after doctor. Pediatricians, allergists, ENTs, psychologists, psychiatrists, a chiropractor, went through an out-patient hospitalization program for 11 days, neurologists, a family doctor, an infectious disease specialist, a homeopathic doctor, on and on and on and on.... I have a 6" thick binder full of medical records, and those are just the ones I have in my possession.

 

We only came across the PANDAS diagnosis because after literally YEARS at the computer, we happened to Google the right combo of terms and up popped PANDAS and this board. We are MINUTES from one of the best doctors treating PANDAS and yet NO other doctor we have seen in this area has heard of this diagnosis. The very few who had heard of it told us, "Well, it's new. Well, it's controversial. Well, I'm not qualified to answer questions about that. I've heard of it but I can't diagnose it...."

 

 

What if I had known about this blood test years ago? Would her ASO have been high then? Maybe. Maybe not. Would I have asked for the test? You betcha. But what if I hadn't understood that it could be low and still be PANDAS? Would she be on SSRIs making things worse? Probably That is IF I had been able to find a doctor to even RUN the test for me!!!

 

The responsibility is two-fold. We need to know that PANDAS might be a possibility for kids (but there is no vaccine to promote so this isn't likely) and doctors need to know how to look for it and how to TRY to treat it, at the very least. There is NOTHING simple about how PANDAS presents in my daughter. Thankfully she isn't presenting with the posturing and huge tics anymore, but I'm afraid that we have lived with this so long now that permanent damage has been DONE. And I can't tell you how angry that makes me. Or how many doctors turned me away thinking I was a kook because in the moment in their office they could see nothing "wrong" with her.

 

---

 

Also, Claritin makes tics worse too. We actually don't treat seasonal allergies at all b/c what I thought was allergies were actually tics (eyes bothering her were because they were ticcing, sniffing, throat clearing... all tics.)

 

 

--

 

Now, let me say one more last thing.... I think it is CRUCIAL to put up our stories. I think even if it's dumbed-down and over-simplified (because it has to be, iniatally, at least, to spark interest) that we still need to get the stories out there. The fact that something like a Today Show story could plant that seed in someone's mind is a BIG BIG deal, because if you are a parent who thinks your kid might have this, you're probably going to go online for more info before you pick up the phone and call for an ASO test. I do see how talking about that one specific test as a diagnostic tool could be a roadblock, but I think it opens more doors than it closes, so I am conflicted here.

 

Do you see my point? Even if ASOs aren't the be-all, end-all, what if suddenly LOADS of parents are calling their peds about PANDAS because they heard these stories? Is that going to cause the peds to say, "Hey, what is this PANDAS thing?" and look into it, or is it going to make them say, "What is this PANDAS thing?" and make them even more resistant because people are demanding blood-tests?

 

-Manda

[Megs_Mom]

Hi Manda - I agree with your post. It is critical that we all tell our stories. We do have never had a positive - not a strep test, not a titer. Until the Cunningham test, our picture was only clinical. Sudden onset OCD 3x. Sensory issues. Panic. Finger Chorea. Stomach Ulcers. Immediate positive results from Prednisone. Calming of all anxiety from Zithro. Under the ASO and related tests, she would be undiagnosed. But she would completely fit the Swedo requirements in all other ways. We just missed testing on her first episode. Had we read Saving Sammy before her diagnosis, we would still not be helped. However, every story matters. I don't think much can set our community back - we are living in the dark ages of PANDAS. But every mom (or dad!) that insists on finding her own cure for her child - everytime we can prove just one more story, and one more... surely will eventually mean a cure for more and more children. Not something that I would be patient about if my child were still suffering! But still important. I will personally do anything to ensure that my grandchildren do not suffer as our children have. I hope for progress for our children today - but we are already so far behind in terms of research and education.

[P_Mom]

Marci....so great to hear of the healing of your son. The video tugged at my heart because my older son had sudden onset motor tics in the neck area much like your son...however, not as severe. I was fortunate to get him on Amox. immediately, (only a 10 day course), and he improved dramatically...almost immediately. I have two boys with PANDAS...my younger son a more severe presentation.

 

My boys are both on proph. Pen Vk...250 mgs twice a day. We have not done IVIG YET...working on it....however, sometimes I wonder if it is necessary. They do have mild remaining symptoms....I wonder if these could be dealt with with higher doses of antibiotics?? HMMMM..it would be nice to avoid IVIG. However, I am willing if necessary.

 

I may have missed it on your web-site....but, could you please elaborate on the treatment your son received. When your son was first placed on Amox., for how long and how much? Did he ever go off antibiotics? Any other meds? I am wondering how old he is today and how is he doing? Any remaining symptoms...still taking Amox.? Sorry, so many questions....you know how it is!

 

Also, my sons get an increase of symptoms when they get any illness, allergies, etc (very mild as opposed to what they get with strep)......did this happen with your son? What did you do about it?

 

Thank you so much for taking the time to post your story....every story helps and it is great to hear of the healing that can occur with the right treatment...that is all of our goals.

 

Kelly

[Worried_Dad]

Hi, Marci, and welcome!

 

Those of us on this forum greatly appreciate what you and Beth Maloney are doing! The more people who share their children's stories - especially success stories - the better. The challenge (as you probably know well) is that most docs don't know much about PANDAS and often just remember seeing articles or abstracts that dispute the PANDAS hypothesis. So (like Beth Maloney) we parents end up searching for months - or years - to find any doctor in our area willing / able to help. It's maddening that so many docs are happy to prescribe high doses of psych meds but not high doses of antibiotics!

 

We had 2 rounds of IVIG this summer that helped but not as much as our doc expected. We were getting desperate. I had exchanged e-mails with Beth Maloney several months before the book came out and tried to get a higher dose of augmentin prescribed for our son, but even the experienced PANDAS clinician treating our son wouldn't "buy" the high-dose abx option. Only 3 months post-IVIG when things weren't progressing well did he agree to try a higher dose... and it seems to be working! Since we started the "Sammy Maloney" augmentin dosing, our son's progress has accelerated considerably.

 

So that's another challenge for all of us. Even if we convince a sympathetic doc who's a "PANDAS believer" to prescribe abx, they want to stick with a standard dose for a standard time period, because (understandably) doctors are trained to avoid overprescribing abx. But Sammy's case pretty clearly shows that - for kids who have a severe case that goes undiagnosed for a long time - the standard dose doesn't cut it.

 

We do still believe that IVIG helped our son and is a useful treatment for PANDAS. Our son's first round of IVIG (October 2008) triggered dramatic improvement (about 70%) in the first month... but another infection sent him downhill again, even while on the "standard" prophylactic dose of augmentin (500 mg daily).

 

So it seems like pure abx can do the job if PANDAS is diagnosed quickly and treatment starts ASAP. But I wonder, after reading "Saving Sammy": would Sammy have recovered even faster if he had done IVIG in combination with the mega-dose augmentin? Seems like the 2-pronged attack - high-dose abx to eradicate / neutralize the strep and IVIG or PEX to modulate the immune system - might do wonders.... I understand why Beth was leery of IVIG 7 years ago due to the risks associated with "pooled blood products" at that time, but the safety of this procedure has improved dramatically since then, and it's now commonly given for many immune conditions.

 

Guess this just makes it obvious that a lot more research needs to be done on PANDAS, and doctors need to stop saying (as we heard at various times): "it doesn't exist"; "it may exist, but your son doesn't have it because [plug in invalid / misunderstood reason here]"; "your son may have it, but there are no effective treatments other than psych meds and CBT therapy." Arrrrggggh!

 

Again, thank you for publicly sharing your son's story. That takes courage, and it will help other children and families who are being tormented by this disorder!

 

 

I am Marci-the mom of Jamie. I understand your concerns. I spoke with a mom, Marianne, yesterday who actually tried to get Augmentin (the antibiotic drug of choice now) from Germany before it became available in the US. Her request was denied. The point I am trying to make is that I know there are many variants in any one child. And Marianne explained that any stress such as illness (bacterial OR viral), immunizations, allergins, etc. can set off this autoimmune reaction in children predisposed to this process. I think that is why antibiotics are not the answer for every child exhibiting strange behavior after an exposure. However, I feel that if a child exhibits strange behaviors with sudden onset, as a parent I would be the first to say get their blood tested for Anti-DNAse B & ASO titers. And IF these levels are elevated I would demand that my child's doctor prescribe Augmentin immediately. This is one answer. It was our answer. And it could be other children's answer as well. We must keep searching for answers for children who do not respond to Augmentin. But for newly diagnosed PANDAS children...I feel they must be given a chance. Antibiotic therapy is this chance. Jamie and Sammy are here to be their hope. My wish is that all children can be free of PANDAS. Let's bring this disorder to the forefront and give parents, although we do not have all the answers, some answers. That is the mission of Beth Allison Maloney author of Saving Sammy and this is my mission.

Marci Lichtenwalter

[EAMom]

Guess this just makes it obvious that a lot more research needs to be done on PANDAS, and doctors need to stop saying (as we heard at various times): "it doesn't exist"; "it may exist, but your son doesn't have it because [plug in invalid / misunderstood reason here]"; "your son may have it, but there are no effective treatments other than psych meds and CBT therapy." Arrrrggggh!

 

Great post WD!

 

I just wanted to comment that it is truly ironic that NIMH and other docs act as if psych. meds and CBT are "proven effective treatments" for PANDAS, which it is not. Psych. meds/CBT have been proven to be somewhat effective for treating regular (non-PANDAS) OCD. IMO, it is dangerous generalization, to then assume such treatments are safe/effective in PANDAS kids. There are no studies to show that psych. drugs/cbt are effective in PANDAS kids. (But there are studies to show IVIG/PEX/abs are effective!)

 

Just b/c PANDAS kids may have symptoms that mimic regular OCD/tourettes, the underlying cause if different...and it is inappropriate to assume they should be treated the same way. This is a bit akin to saying "wow, you have chest pain (the symptom)...lets treat it the same way regardless of it's underlying cause (heartburn, heart attack, or knife in the chest)."

[matis_mom]

Crap! We are on zyrtec.......!!

 

Also, I totally agree, everyone (doctors, friends, co-workers, parents) all told me (some even still do) that all this is NORMAL KID STUFF. We have low titers and the not as obvious OCD behavior (at least to someone who is not well versed with OCD like me). We're not an easily cured by antibiotic PANDAS family either but luckily the antibiotics help in the mean time.

 

Susan

 

I does just make you mad, to think a lot of the symptons (tics, swollen joints, fatigue, decline in attention, etc.) that our current Dr. put together in 30 minutes of just talking to us had been brought up to the pediatricians in numerous occasions and no one connected the dots... My heart sunk when she said "it's strep, we need to check his heart too" He just happens to have a murmur, which turned out to be nothing, but to think he could have had some permanent damage, it made me so mad that no one even bothered to check it out. His wrist would swell up and hurt every now and then, and all the pediatrician could say was "it happens". IT HAPPENS??? that's rheumathoid arthritis, it doesn't JUST HAPPEN! We don't all just have our joints swell and hurt out to the blue at the young age of 11!!!

Sorry, I'm just venting...

So glad we found a good doctor, so glad other moms out there are sharing their experiences...

 

Isabel