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I am rather surprised. Stunned really. Got the results of all the lab work done. IgG and subclasses normal. IgA normal. IgM normal. Lyme Western Blot normal. Mycoplasma IgM AB normal. anti strep DNaseB normal. Antistreptolysin O normal. Mycoplasma IgG normal. He shows absolutely no signs of ever having had a strep or mycoplasma infection. Two things outside normal. IgG subclass 4 is a little high (probably allergies) and ferritin is low (needs more iron in diet).

 

My son who seemed to us, perfectly normal, changed overnight after the FluMist last Oct, when he was 5.5yo. Has presenting symptoms of PANDAS. Had a "remission" in Dec-Feb. Started it all back up again in Mar. Saw head turning tic for the first time in the late spring early summer. Went away. Diagnosed Aspergers two weeks ago, along w/ sudden tics of throat clearing and eye blinking beginning.

 

Started biaxin on Oct 18 (11 days ago). We've seen a decrease in the intensity and frequency of the tics and an absence of anger, plus a lifting of his mood to a happier little boy.

 

I just knew he had PANDAS. Dr T says it still isn't ruled out. Supposed to phone him to talk.

 

Wise PANDAS parents who've seen it all here. Just tell me if I'm on the wrong road here so we can figure out what is going on w/ our son or just accept that he is Aspergers, put him on an antipsychotic and move on.

 

Thank you

 

 

Cindy

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I don't know if I can claim "wise" PANDAS parent status yet, but I'm a VERY, VERY quick learner! I actually just listened to a presentation that Dr. T did at the Autism One conference back in June (ordered the DVD, which shows the slides--excellent & I will post separately on those too). On there, he said something about how there are additional tests for strep that can pick up a few other classes that ASO/DNaseB don't get (like maybe 3 more, I think). So maybe they'll look for those other strep strains if not done in the testing.

 

I'm not familiar enough with your son's symptoms to know if he had recurrent ear or sinus infections in past or if this was from the FluMist only. Does he have his tonsils/adenoids? If so, how do they look...enlarged, white patches, etc....? I do wonder how seasonal allergies play into this...it's never mentioned as a cause but it seems many of our kids have them too & can be a trigger maybe (not sure that I've seen that documented or that I'm extrapolating association). PANDAS is so new, I personally wouldn't rule anything out yet. Especially if you didn't see any of this before the FluMist. Have you culled thru the medical records to every illness to see if you can find behaviors/incidents after treatments (including any negative strep tests since they're so unreliable). If you've done a steroid burst & he responded, then maybe that will be enough. That he is responding to abx points to some kind of infection inducement IMO. And EXPOSURE is the key too...he may test negative but the immune system has been activated for whatever infection.

 

And what irony...normal test results cause concern. Just one more thing to be mad about & what this thing does to us! :angry:

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I am rather surprised. Stunned really. Got the results of all the lab work done. IgG and subclasses normal. IgA normal. IgM normal. Lyme Western Blot normal. Mycoplasma IgM AB normal. anti strep DNaseB normal. Antistreptolysin O normal. Mycoplasma IgG normal. He shows absolutely no signs of ever having had a strep or mycoplasma infection. Two things outside normal. IgG subclass 4 is a little high (probably allergies) and ferritin is low (needs more iron in diet).

 

My son who seemed to us, perfectly normal, changed overnight after the FluMist last Oct, when he was 5.5yo. Has presenting symptoms of PANDAS. Had a "remission" in Dec-Feb. Started it all back up again in Mar. Saw head turning tic for the first time in the late spring early summer. Went away. Diagnosed Aspergers two weeks ago, along w/ sudden tics of throat clearing and eye blinking beginning.

 

Started biaxin on Oct 18 (11 days ago). We've seen a decrease in the intensity and frequency of the tics and an absence of anger, plus a lifting of his mood to a happier little boy.

 

I just knew he had PANDAS. Dr T says it still isn't ruled out. Supposed to phone him to talk.

 

Wise PANDAS parents who've seen it all here. Just tell me if I'm on the wrong road here so we can figure out what is going on w/ our son or just accept that he is Aspergers, put him on an antipsychotic and move on.

 

Thank you

 

 

Cindy

 

Not claiming any wisdom...but flumist could beeen the trigger...that is now cleared....

now it is autoimmune, possibley....and outside influences are definitely a factor...allergies, others being sick..

 

quick story...

i was at grocery 2-3 weeks ago...i turn corner to a new isle...i smell cigarettes...i see no one, but a guy down the far end, 40-50 feet away...as i got closer, so did the smell got stronger...it did not carry over the top of the isles..i guess these particles are heavy and hang lower and ran down the isle...as i turned the next corner..he did not move the smell was gone

though i have not been able to document for my ds specificly...

it goes to show you how far particles travel...as humans we can only register certain types of smells..that this is what they are ...there are obviously other things in the air that our brain is receiving, but it cannot register a que of "oh, it's this or that"...however dogs can follow a scent, detect cancer, smell bombs, predict a seizure...it's not that these aren't present at detectable levels...our brains are reacting sending soldiers out to fight in our systems, but cannot tell us what it is"oh, i smell my master come home, i smell strep, i smell cancer"

sorry to babble...

 

you do need to address the iron and anything you find..these may help alot...

i believe doc t says you can test till the cows come home for cause...do the best you can..and then start to just address his whole well being...obviously something is wrong

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Hi - we had all negative tests as well - our daughter looks terrific on paper (with exception of high speckled ana & slightly low WBC), but then she tested positive on Cunningham, and has a classic response to prednisone and antibiotics. I know how hard it is, when everything on paper says nothing is wrong - and you are deciding between very different treatment options both based on a clinical diagnosis. I pray that better diagnostic tests are released soon. In the meantime, if the abx is helping - then take a deep breath and keep helping your son. Awful place to be, I do realize. I would certainly treat the low iron! And maybe run Lyme tests 188 & 189 from Igenex, and the Cunningham test, if you would like more information that what the abx is providing. We used our faith in Sudden Onset as our primary diagnostic. Kids really should not turn into completely different joyless people in a matter of a few days!

 

From one low titer mom to another - you have my empathy! (By the way, we have been between 95-99% for over a year now on abx alone. Still crossing my fingers & saying my prayers every day).

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I would run binding immune complexes, c3d and c4d to see if the immune complexes are binding to something 'bacteria'. If there are any binding complexes it could cause there to be a false negative especially when it comes to Lyme testing. Also have you done CaM kinase? I view it as a wonderful benchmark that there is something at play for your child. All of the above: Lyme, Strep, Mycoplasma, etc can be hard to test for and ultimately it is the clinical diagnoses and treatment 'that is working'... that will get your child well.

 

Keep in investigating.

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Our son has rarely been sick. He had a couple of ear infections as a baby, then went two years w/out seeing his ped, except for well child checks, because he did not get sick. He had an ear infection in Jan 08, when he was four. He was given amoxicillan and had a terrible reaction to it......tantruming, oppositional. So, after about 5 or 6 days of amoxi, it was discontinued and the ped said his ear infection would get better. It did. Next year in Jan 09, age 5, another ear infection. I can't remember exactly what he was given, Omnicef I think, ear infection went away. All was well until this past Jan 10, age 6, yet another ear infection that Omnicef cleared no problems. This occurred after the FluMist in Oct 09, but during the time when he had returned to near normal (Dec 09-Mar 10).

 

He was diagosed w/ seasonal allergies when he was 5 (snores, wakes up congested in the morning then it all clears out) and given Flonase. Another bad reaction.....tantrums, opposition until we stopped it.

 

That is really his unremarkable medical history. I don't even need to look at a copy of it. Its that simple and short. Never previously tested for strep.

 

I can say that two weeks after the disasterous FluMist reaction, he got sick again w/ 103 fever, kept to 101 w/ Motrin, for a few days but seemed to recover from the illness quickly, except for the ever increasing behaviors, anxiety and ocd. Then, I got what seemed to be the same illness and I remember telling my dh that I hoped our DS6 throat didn't hurt as bad as mine was hurting. I was taking Motrin for it. It never occurred to me that he or I might have had strep. He recovered much more quickly than I did.

 

He has not had a steroid burst. After the Flonase, I'm scared to do it, although it has not been suggested yet.

 

He's never been bitten by a tick that I am aware.

 

Sometime this past year (can't remember exactly when), dh noticed DS6 had a rash on his behind when he was bathing him and had me look at it. He had a red rash in the "crack of his butt" like a diaper rash. It puzzled us but I put Aquaphor on it and it eventually went away. I just can't remember how long it lasted. Its seemed so innocuous to us. We thought he might have not wiped well. I only thought of it again when I read something on here about perianal strep. Was it? We will never know.

 

I requested a Cunningham kit nearly 2 wks ago. I was told the consent form was under revision and they wouldn't be mailing any out until the university signed off on it. I will have the Cunningham test done as soon as I receive the kit.

 

Its so ironic that I wanted that bloodwork to be abnormal. I hardly know which direction to turn. We are pursuing the Aspergers w/ the school so we can get some accommodations and services into place at school. He's actually doing pretty well in school. Academically, he's a couple grade levels ahead in math and reading. Its a good thing, since his behaviors of lining up crayons, have some trouble transitioning to other tasks, being a little overactive, wanting to answer all the questions, needing a lot of the teachers approval and attention and somewhat not getting along w/ the boys in his class have to be causing him loss of attention, not to mention the tics of throat clearing and eye blinking he developed on Oct 12, his anxiety and other ocds. His ocd's are not really inpairing his ability to function, they just make him seem weird and are probably responsible for his transitioning difficulties. He's got to finish what he's working on before he can move on. He was not like this in kindergarten last yr.

 

I need to sit down and write a book. Oh, and he 'hops' from time to time like Sammy on the Mystery Diagnosis episode. That is what woke us up to PANDAS.

 

The only thing I know is the improvement we've seen in the 11 days since we started biaxin. If you are still reading this long message, I do thank you and thank everyone for your replies and suggestions.

 

Oh, and to muck up the waters even more, our DS was adopted at 6 months of age from Russia. Everyone wants to blame his current issues on that fact, never mind he has developed normally until last year.

 

Cindy

Edited by nicklemama
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Nicklemama,

 

I'm curious as to what labs Dr. T uses to test the lyme and myco?

 

I think that you are right to keep pursuing an infectious problem. If your child is abx responsive, that is of course a big clue.

 

As mentioned, many of these tests are not necessarily accurate. There are many different strains to certain things, and the tests are not sensitive to catch them all.

 

My daughter is lyme/coinfections, and had nearly the identical symptoms as most here on the pandas/strep board (including sudden onset following vacs; and the hopping too (!) ) She tested with high CamK on Cunningham test, just so you know it is not specific to strep.

 

I would strongly urge you to take your child to a doctor who is familiar with many of the possible infections that could cause these symptoms. That may be one of the PANDAS docs, but also a LLMD (Lyme/other infectious expert). A child really needs to be thoroughly examined IN PERSON by a knowledgeable doctor.

 

 

Mary

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I have two daughters with pandas. Both sudden onset. One at same time as strep infection. One mild onset (overlooked) at strep infection, and then major onset post H1N1. While we have not done the extensive testing that some here have, they have come up perfect on everything including mycoplasma, strep titers, IGA and IGG, WBC, lyme (via western blot not igenex lab). The only test that shows anything is the Cunningham test, which both had high anti neurals. Other than neuro symptoms, however, they are the picture of health.

 

Frustrating- but at the same time, it is a good thing.

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While I think it is important to keep looking for infection, you do not need an active infection to have pandas. It is something that happens after infection. Most of the studies talk about "post-strepoccocal" or sequele - this is after the infection. Sydenhams Chorea, happens several weeks after the infection - when it is gone. But if there is infection that is not cleared up by the body - obviously our pandas kids will keep producing the incorrect antibodies, that bind to neuronal cells instead of the antigen.

 

It is interesting that you have low iron - we do too, and I've heard this is a fairly common pandas thing (also read it is a lyme related thing - Lyme people can chime in here). my DS's is not outside range, but it was low enough that doc recommended supplement. We decided not to supplement, but do now have ds eating iron fortified cereal. There is a school of thought that if your body is not processing/absorbing iron - then supplementing can cause more harm than good because it may store the excess iron in places it should not. I know he has a diet rich in iron, so, my thought is that he is not absorbing well. Anyhow, you might want to look into that before you start supplementing. Taking iron supps or eating iron rich foods with Vit C helps absorbtion as well.

 

For us, the Cunningham test was very important in confirming diagnosis because we didn't have high titers for strep, or known strep throat. But, we did try to eliminate all infections as well (and are still in the process of testing for more !)

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You are likely on the right track with PANDAS despite the "great" test results. I'd say that reaction to amox was really an exacerbation. We used to think it was the abx making ds act a little whacky & prepare ourselves for it...never thought it was the illness until now. We'd find that sometimes he seemed more mature after an illness, which was proably just when we finally cleared an infection & he his brain wasn't being attacked. I also had my ds on allergy meds & stopped using them due to the "side effects", which I think now, might've been exacerbations too. (If you read on any of those web sites that show side effects of meds, it's probably actually a good source for PANDAS test subjects.) We've seen "hygiene" issues before & now figure it was strep. And strep can hide in the body anywhere. We think we had early onset with mild exacerbations until he got dx'd with strep A. & then it wasn't so mild anymore. Whether he'd had previous infection, I don't know because he's asymptomatic. Had what seemed like a virus or flu when Dec strep dx'd. Before positive culture, I dx'd 2nd case of strep in Sept based on behaviors...no fever, no pain, no complaints (unless OCD, rages, tics can be considered complaints for PANDAS kids & I think we can safely assume they are).

 

Your son's likely being exposed all over the place at school to strep & flu (including the shedding of the shot) & all kinds of stuff that's causing his reactions. My ds would have good days, bad days, & HORRIBLE days at school. And not to scare you (tho' it will), I hope that your son doesn't ever rage at school, because if you want to feel a sudden shift in your relationship with absolutely everyone at school...have that happen. They're helpful up to then...after that, not so much. And even tho' I thought they were panic attacks, it didn't matter. And even tho' I was doing everything I could think to do to help him, it didn't matter. They will pick apart every single thing the kid does & watch them like a hawk & increase the anxiety & keep activating that fight/flight/fear response until your kid shows them EXACTLY what they wanted to see & then relish in telling you ALL about it in meetings/phone calls/notes/etc.... We're homeschooling now.

 

P.S. I PM'd you too. Long one. :)

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Don't have time to read all of the great posts on here, but I thought I'd share my story quickly.

 

My son was classic textbook sudden onset, has been responding wonderfully to abx treatment (85% since January) But ALL of his labs also came back perfectly normal. Like someone else above said - he looks great on paper...it's in person that's the problem.

 

Our pediatrician and Dr. Murphy both agreed that there's less importance in the bloodwork than in the clinical symptoms and dx and his response to treatment. Our neurologist is the only one who seemed to care that the bloodwork was normal. (Tried to tell me this am that since the bloodwork was fine - he doesn't think he fits PANDAS anymore - luckily, we only see him 2x a year now unless there's an emergency and he's not recommending any psych meds so I didn't bother arguing with him...)

 

So - yes - it can still be PANDAS with normal labs. It is for us.

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Thank you all. You are making me feel better and more inclined to think I'm still on the right track. Dr T made a list of bloodwork he wanted done. I took it to my ped, who ordered it from the lab her clinic uses. Most of the tests were performed at the Detroit Medical Center University labs. The Lyme Western Blot was performed at ARUP Labs in Salt Lake City.

 

The worst part is I'm not sure how much cooperation the ped will give now that the labs have all come back normal. I hope she hangs w/ us.

 

Dr T said we'd do more labs in 30 days and stay on the biaxin. I haven't spoken to him yet.

 

I'm so afraid he'll have a meltdown at school. Actually, we've seen no anger flashes since starting biaxin. Knock on wood.

 

Cindy

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