[Interesting Study on Celebrex & PANDAS in Germany]

Ditto---would like to see the fully copy.....

[what should I do?]

I'm sorry I gave such a short reply last night. I didn't mean to sound so heartless Anyhow, it's easy with this disorder to assume everything is from strep, or pneumonia, but I truly believe that these kids, or at least a group of them, while perhaps initially started with strep, may react to viruses. And some of these kids might ONLY react to strep. But they are kids, nonetheless, and not every illness is strep or pneumonia, whether the child is having an episode or not. Not sure if that makes sense, but my point is that dosing up abx every time the kids get sick might not be effective, as sometimes a kid can get sick, have an episode or not, but just be sick--with a simple childhood virus. Don't get me wrong, it always drove me nuts when I would take a child to the doctor and all I would hear was "it must be a virus"--but after having 4 kids, I really think, sometimes, its just a virus.

Not sure if this helps or not....I know we all are in battle mode, and want to take on every slight illness with a full army---abx, supps, etc. Just not sure any of it helps in some of these situations where the kids are "just sick."

[what should I do?]

Honestly....at a wrestling tournament....but I jave to say.....it could just be viral

[Guess who my "second opinion" local neuro. had dinner with las]

Yes! That's it--and it's awesome! Sorry, I should have posted link---

By the way---I love your handle---GraceUnderPressure. I sure wish I could say the same. I'm more of FreakUnderPressure

[I don't know what to do anymore..]

I am sorry but I wonder about the 100% treatable---does he mean "curable?" From what I have heard on the forum, not many people here (and maybe it's because the 100% treated cases move on and don't need a forum...) get 100% cure??? I am really curious about this statement---can you elaborate?

[Is this a PANDAS symptom?]

Hmmm...I think it is more of an ADHD thing---I have seen this with MANY ADHD kids (I am a teacher by trade...)....HOWEVER, ADHD can also be a sign of Pandas. I think we are all so "PTSD" with all this that we have to be very careful not to rope all of our kids into a situation where normal (well, abnormally normal) behavior is lumped into pandas. Don't get me wrong--I am seriously wondering if 2 of my others have/had it as well. My dd8, back in preschool, K, and 1st grade would get throat clearing tics, and horrible separation anxiety at school. Would last a month to 6 weeks, then stop, then return. She has very dilated pupils as of the past few months, but no tics, etc. but always has been very easy to fall apart. Also still wets the bed. My dd11 questions over and over, things he already knows the answer to, and also wets the bed. Goes through periods of picking his lip, biting nails, etc. But they are functioning, so as of now, I am going to leave it alone....I think.....I think....I think.....

[Interpreting Cunningham tests]

My dd had very similar results and sudden onset of tics---she had had some ocd for a couple years prior. Didn't know about pandas, so didn't think to link to the MANY illnesses she had. A couple tics this spring after pneumonia (tested neg. to myco p), and then after a high fever, sudden onset of over a dozen tics, head to toe, which are still present (with ocd, sep. anx, hyper, etc....)

 

Our results:

Cam K 168

Anti-lyso 320

anti-tubulin 500

anti-dopa 1 4000

anti-dopa 2 4000

 

According to Cunnningham, the Cam K is in the high (med-high) pandas range, "but we dont' know what that means" and the anti lyso was double the mean, which she said was high, as well as the anti-dopa 1, which was 4 times the mean. Looking at your numbers, your anti-lyso and Cam K are the same, your anti-tubulin is at the high end of range, and almost double the mean, and your anti-d2 is at the high end of the range as well, 3 times the mean. Again, even Cunningham, as of last I spoke with her (a month or so ago) will say "we don't really know what this means yet"---but I know she is collecting data on symptoms and results to get a better picture.

 

I think P. Mom might know more....P.Mom???

[Guess who my "second opinion" local neuro. had dinner with las]

GraceUnderPressure: Leckman, Murphy and Kirvan (?) just wrote a paper---it's on pandasnetwork.com. VERY well-written and covers a lot of great info. Definitely something to bring to any doc you might want to educate:)

 

I don't know if I really left with anything profound, other than I feel less "rushed" to get to IVIG...that I'm not missing a "CURE" per se, although I have heard of a few cases where just abx or abx/steroids were a cure. But I think if it's been going on LOOOONg then we've probably missed the window of opportunity.

 

Will keep you posted if I get the courage to e-mail this doc and get the scoop:)

[Taking our kids out of school]

We too homeschool. It didn't start out for pandas reasons. This is our second year, and now that we are in it, I wonder how dd7 would manage in school, with the separation anxiety, etc. My dd8 always had issues with sep. anxiety, often got calls from school with tummy or headaches, etc., but we pushed through. My dd7 has not been sick near as much as she was when my other 3 were in public school and she was in preschool. I am thankful she is not at school to be teased for her tics, or "strange" thinking, etc.

 

As for social interactions, I will say that where we live, there are TONS of opportunities for social outings, intereaction with other adults as "tutors" in co-ops, etc. So dd7 gets to do all that, and I am nearby. And in addition, and this is NOT the rule, but I find it to be more of the norm---most homeschool families are good-hearted, compassionate people, who will love your child for who he/she is, and so will their kids. Don't get me wrong---kids are kids, and may say "why do you keep sticking your tongue out"--but with a caring parent nearby, it can be diffused and used as a learning opportunity.

 

I will say too, that there are days I secretly wish she (all 4 of them, actually) were in school---it does get stressfull staring pandas in the face all day every day...especially the tics and the germ and clothing issues......sigh.

 

I think my biggest struggle right now is finding curriculum that dd7 doesn't despise, and doesn't stress her out, while not leaving her to do absolutely nothing at the same time.

[Guess who my "second opinion" local neuro. had dinner with las]

I took dd7 to the original neuro. who I had scheduled with in September, when I had been to the pediatrician twice about the sudden onset of tics, etc.....who had poo-poo'd pandas. This neuro. is a movement disorders specialist. I really don't know why we went, as I was SURE he would say to treat pandas with SSRI's and CBT. Well, maybe he did, looking back. BUT........he was like a man version of L---patient, not rushing us, etc. AND....after explaining my dd to him, when I mentioned pandas, he sort of rolled his eyes, and I thought "&*#@ This, I'm outta here...."

 

Here lies the "holy cow" moment. He said he doesn't believe that pandas is ONLY strep related, that he had just recently treated a kid who was a child of a prominent psychiatrist, who had a sudden onset. They tested for strep, etc....negative. It ended up being myco. p. Kid got antibiotics....cured.

 

Then he said, "guess who i am having dinner with tonight?"---L and S. OH, what I would give to have joined them!!! He said Dr. L had called him and said "let's figure this out" as they are still trying to figure out a "treatment protocol" for the "white paper." Knew about the "secret meeting" and all of it. I was throwing everything at him---Leckman's info, Cunninghams tests. I brought him Leckman's paper (he read it while his intern was examining dd) and said "now this is good stuff...great references....and basically it spells out all sorts of things...but the bottom line is what do we do...we don't exactly know." I also brought him the paper Cunningham sends with her results. As for anti-neuronal antibodies, he said at any given time, any regular person off the street could test and show anti-neuronal antibodies. He also mentioned Harvey Singer--and how he's NOT a believer, as he has not been able to replicate the studies already done.

 

He also said that myco p, strep, and Lyme are implicated in this "syndrome"---which he looks forward to the change in name, as pandas limits people to the strep as onset, and he doesn't believe this to be such a big indicator as other viruses, bacteria can be too. He did look at dd's Igenex results, and the Western Blot from Labcorp, and said we should be "very careful" with Igenex's results. That the FDA had been at their door a couple times this year, etc.

 

Also said that PEX, IVIG, steroids are not "cures"---that they give relief when kids are severely affected, but it is not a cure, as they could have a setback with whatever illness may trigger it next. Also said to be VERY VERY careful with steroids, that he has seen steroid-induced psychosis, etc....and that the side effects aren't always worth the very temporary effect of the steroids. I asked him if there was reason to believe that if PEX/IVIG were helping severe cases, even temporarily, that maybe doing it before it got severe may arrest it completely. He did not think so.

 

He did say that CBT (and even possibly SSRI---gulp) can really help with the OCD EVEN IF it is pandas....the bottom line is OCD is OCD, regardless of what causes it, and CBT can really give these kids some tools, etc...

 

Not sure any of this is helpful, but I was just relieved that there may some day be another doctor to add to the list of believers. I am seriously thinking of e-mailing him to see what took place at the meeting. He said we are in good hands with L, and we know that, but that treatment really is still a crapshoot until further info. comes out.

 

The funny thing was that he said I was the most well-versed parent he'd ever had come through his doors....and I don't say that to toot my own horn, but to toot EVERY PARENT on this forum's horn, as I know any one of you all would have had the same response by him. Docs are so hard on "the forum" but I credit it with everything I know, or as a catalyst to finding out more....so thank YOU all.

 

Will let you know if I manage to pull some info. from the dinner

[Brief Update from Cunningham]

Yes--THANK YOU!! I would love to hear what data his study has found, etc....did she give any hints?

[Still Holding My Breath]

I really don't know how to respond, but I am sorry for you angst with this---I so get it. It's interesting that things that used to seem like "normal sick kid" stuff, like being clingy, moody, etc., now make me say "oh no!" I hope she will get through it unscathed. What treatments have you done for pandas child so far?

[A million questions about treatment, symptoms, is there a "cure&#3]

I am sorry if I may be redundant here, but I am just really, really struggling here with what course to take with my daughter. My goal is to give her a good life, and to NOT make things worse. That being said, IF, IF, IF this is pandas/pitand or ANY type of infection-triggered situation (the germ ocd starting a couple years ago, the hyperactivity, the couple tics this spring, the onslaught of tics this summer, separation anx, etc....) and I can possibly arrest it rather than it turning into lifelong Tourette's, then I owe it to my dd to try something. My brother does have Tourette's, BUT also had chronic strep and ear infections as a kid. Tonsils/adenoids removed. On abx. STill has Tourette's. AT the same time, it appears that abx alone are not the cure for many of our kids.

 

I am wondering a couple things---if dd has had no change in onset of sudden many tics, does that mean that we are past the infection stage and looking at an autoimmune situation that abx are NOT going to solve? In that case, won't steroids only put a damper on things for a brief period of time??

 

Also, we have never done a viral panel or anything, nor seen LLMD yet, so aren't those important before trying steroids?

 

My dd is not "severe" as some of you have---yet. Yes, the ocd stuff is annoying, and the separation anxiety is annoying (and scary for her) but we homeschool. And her sibs sleep with her at night. She is generally happy (unless having a meltdown about someone touching her food, or crossing her in any way). But the tics. When she just had a couple, I blew it off as "just a phase." Then after the fever, when it became head to toe tics....unless she is very focused, she is pretty much stretching her mouth, sticking out her tounge with a curl, blinking hard, widening eyes, stiffening arms, flicking fingers, sometimes snapping neck back. BUT SHE NEVER COMPLAINS ABOUT THEM.

 

I go back and forth, thinking "it could be so much worse"---but then "what the heck happened to my kid?"

 

Cam K was 168, Lyme had a few ind's and +'s that I personally believe to be cross-reacting with something. Anti-neuronals had D1 high, and lyso. BUT......on one hand, you see those and some will say "it's pandas" but others say "this is just research and we don't really know what it means."

 

I have read the horror stories of kids getting WORSE on steroids, and IVIG, and the risks, and I look at my kid and think "she is pretty okay"---and then I think "something is really, really wrong" all wrapped up in one. People say "just try the steroid...if it works, it's pandas...if not, then you know it's NOT." It's the "if not" that scares me...that I will cause worse tics or rages in her. So many say that IVIG and PEX are for severe cases, which I can see, as they are both invasive and not without risks. BUT ... what if we were to do those treatments BEFORE it gets severe? Maybe avoid all of this?

 

Is there really a CURE for this? Does anyone really have a cure after steroids, abx, IVIG, PEX? Or does it just tame things down until the next exposure/infection?

 

I just don't know anymore. I want it all to go away so I don't have to decide. I went through the ringer with my first dd---major digestive issues, at Chidren's, Hopkins, many, many invasive biopsies, procedures, NG feeds. At the same time I was diagnosed with cancer. Then my second ds had to go through similar stuff for digestive issues, enlarged spleen, possible leukemia. Number 3 came along, and i got postpartum depression. Number 4---my pandas kid, was always sick, were told she might have Down's at 17 months of age (she doesn't). I've had enough. Yet I know I can't get out of this one either.

 

we have seen Dr. Latimer, and I love her, but I wonder if it would be good to get another man on board the ship.

 

Sorry to sound like a big blubbering whining complaining sob story. No pity wanted. Just needed to vent, as my husband is totally uninvolved with this....thinks it will just go away if we leave it be.

 

I have more ???'s but need to run kids here and there. Thanks for listening.....

Wendy

[Parental Healing]

I ditto that JAG10!! I have been thinking the same thing lately---how most of us on this board are probably geared to be a little "obsessive" about things....and to have this to obsess about. I have tried to make a deal with God---take this away and I swear I won't obsess about anything "normal" again....

 

Reading these posts almost brought tears to my eyes, realizing that the timeline some of you gave to YOUR OWN struggles (LLM ), and realizing that while your own world was crashing in on you, you were there giving me support as I started on this nightmare. I am sorry I have not given the same. I think I am truly still not at the place where I believe things will actually get better, or that any of these treatments are cures. I'm still all over the map (was getting ready to post about it ), but know that I pray for all of these kids, and their families, that there will be miracles of cures, and that whatever happens, we have the strength to give our kids good lives.

 

I have to say that this illness has torn my marriage apart...my husband and I are living separate lives under the same roof. We disagree about everything. He does not do ANY research, just says "it's a phase, she'll get over it." or "just give the steroids...it'll be fine" when I know it may not be....so i wanted to thank you all for being my "significant others" while I don't have one here at home (not sure what kind of smiley face to put with that one!)

Wendy

[Cunningham results]

I don't know that these results really change how any of the docs are treating kids??? Our pandas doc said the CamK was not of as great interest to her (Cam K was 168!!!) as the anti-neuronals would be when we got them back.

I go over and over and over and over this in my head every day.....STILL can't totally wrap my head around what these results mean. And also, when I do have a brief a-ha moment, I think they indicate very different things. CamK indicates inflammation (cytokines) ??? and anti-neuronals are the auto-immune part??? Is this waaaay off??

[Which bugs other than strep cause PANDAS to go downhill?]

Not to be taken the wrong way, but I sure @A#$&-ing wish I knew In our case, the initial insult MAY have been strep, but mommy-of-the-year was not taking dd to docs to avoid over-use of antibiotics That started with some germ-type ocd and a bit of separation anxiety and hyperactivity. Then a few tics started a couple years later, likely after walking pneumonia---but myco. p was negative. Nonetheless, it was a loooong respiratory illness with repeated sets of fevers. Finally, a high fever for one day (not strep---we don't think) and the tics went wild. Following this, within a week or two of tics starting, 3 months of exposure to staph impetigo, with no treatment until after the 3rd month........I know, I know......sigh....shoulda-woulda-coulda.....

 

I really hope the new name for pandas takes away the big STREP connection, as I truly believe that it's NOT just strep at work here.

[help with Cunningham test]

kimballot---I would LOVE to hear your speculations about the antineuronals:) PM me if you want...

 

I just got my son's anti-neuronal antibody titers from Cunningham's Lab. All of his are in the normal range and even on the low side of normal.

 

Do the kids with PANDAS normally have high values on these?

 

What about Lyme?

 

We had got our CamK result at our appointment with Dr. B. last month and that number was 159. (I think I am remembering right.)

 

Does it matter if the child was in a exacerbation when the blood was taken?

 

Thanks

Elizabeth

 

I don't know exactly what the antineuronal antibodies mean and I don't know if the researchers do either at this point. I don't think there is any research published on it yet. My son had a CamK score that was similar to yours and I believe he was above the normal range in only one antineuronal antibody. I have lots of speculation as to what these antineuronal antibodies mean, but no facts yet. Maybe someone else knows more.

[more IVIG or Lyme]

I have wondered about trying 5 HTP with dd--since ocd is linked with it. but with everyone saying it's not a good idea for pandas kids to take SSRI's, I have not tried it yet. Wouldn't they do the same thing?? Why would SSRI be bad but 5 HTP be okay?

 

Hi Michelle,

do you live (or used to live/spend time) in a Lyme-y (or tick-y) area? Is there a history of tick bites (yes, I know that many lyme victims don't recall a bite). If that is the case, I would lean towards checking for Lyme at some point, esp. with the fatigue. Is there any neuropathy, tingling? or joint issues?

 

I suppose if you switch to Azith, and you see herxing, that might be a clue. I don't think there is much harm in switching to Azith. for 1-2...if he backslides then you can always go back to Augmentin sooner. BTW, my dd's ped seemd to think that yeast would be more of an issue with Augmentin (vs. Azith.)....I don't know if this is true.

 

I also agree that healing takes time...as long as the overall trend is in the right direction, that is good.

 

I also wonder if the carb craving could be due to low serotonin. Assuming your son isn't on an SSRI, maybe tryptophan or 5-htp might help?

[started with itching throat...fever yest...today red cheek]

Great idea!!

[started with itching throat...fever yest...today red cheek]

DD7 started with "itching throat" a 3 days ago, yesterday, fever hit 100-101, but mostly happy. Congested, etc. Red streaks in back of throat, a few small dark red patches on roof of mouth towards back. Today, red spot the size of a silver dollar on cheek right on side of mouth, almost like she drooled but it's red, says it itches. Related???

Editing: Just noticed a small red spot on side of ds11's mouth.....

[itching throat...now fever...help ASAP]

Peglem---huh??? oh crud....can you explain what you mean?? why do you get a break during a fever??

 

What's a culture with sensitivities?? As for her behavior, I don't want to get too ahead of myself, but she is about as happy as I've seen her---still ticcing away, etc., but quite "hyper" in a good way. Almost manic happy, being sick and all. Weird. I'll take that over freaking out any day though.

When my child had a fever (very rare), it was like a vacation from PANDAS, but as soon as it was gone- LOOK OUT!

[itching throat...now fever...help ASAP]

What's a culture with sensitivities?? As for her behavior, I don't want to get too ahead of myself, but she is about as happy as I've seen her---still ticcing away, etc., but quite "hyper" in a good way. Almost manic happy, being sick and all. Weird. I'll take that over freaking out any day though.

[itching throat...now fever...help ASAP]

Initially I thought it might be an allergic reaction to the zithromax. I know they can develop any time...even if a child has taken that abx previously just fine, and even mid-treatment (happened to 3 of my 4 kids). But now her fever is over 101. I swear, I am so out of my element here, as I have let fevers of 104 "run their course"--makes me sick to even say that now. I looked in her throat again, and there are some dark-reddish little patches on the roof of her mouth....really just don't even know what to do. I switched ped's when we first started this, because for 3 months my regular ped. poo-poo'd pandas. But new ped. it 50 minutes away, and is not even in the office today. I can't even imagine going to a doc and not only having to bring them up to speed with pandas, but to explain why my kid has been on abx so long without diagnosed strep anywhere....sigh.

[itching throat...now fever...help ASAP]

Posted last night about dd's throat itching past couple days. today 100 fever. i would NEVER normally even think about bringing a kid in for this, but....that has bitten me. So, she's been on zith. for a month at 100 mg/day (weighs 46 pounds). Could she still have strep? One tonsil looks more swollen, and the very back of her throat has red "veins" that are really red. We have never had diagnosed strep (could have been missed over the years due to me NOT taking kids in for stuff like this!!!). Also, can you get STAPH in your throat??

["my throat itches"]

We've just finished about a month of zithromax, after doing a month of augmentin. The past 2 days my dd7 keeps saying her throat itches. I ask if it hurts, and she says no, it itches. I keep waiting for her to start a vocal throat-itching tic. I've had a respiratory illness since the weekend, and throat has been sore, etc. but never "itching." I am wondering if this could be from the zithromax??? My other 3 kids all developed allergies to different abx after being on them so many times (they each got hives after having been on the abx at other times....one is augmentin, one amox, and one is to zith.). but never itchy throat.

 

also, dd7's belly looks really bloated today----ugh, what now:( I so fear making one thing worse while trying (unsuccessfully) to make another better.

 

Hopefully it's just the bug I have making her throat "itchy."