Pandas or TS? or both? newbie needs help...

[eljomom]

I am posting here and will post on the tourette's forum as well. I am a bit weary of posting on the PANDAS forum--and PLEASE know that I don't mean this in any way to reflect anyone's willingness to help here---but I am not certain this is PANDAS due to my family history, so I don't want to jump to conclusions that this is what's going on. Hope that makes sense? But I am looking for direction, as I think I am going to also need something for the ocd I'm feeling in regards to figuring this out;)

 

I have a daughter who will be 7 in December, who suddenly developed a bunch of tics within a week of running a high fever for one night. There were a bunch of kids in the area who had that, and none of them had strep, so I didn’t take her in. She was totally fine the next morning. In any case, I am wondering if tourette’s can start so abruptly like this? My brother has Tourette’s and OCD, so I know it runs in the family.

 

My daughter has been a bit OCD for as long as I can remember (won't eat the last bite of her own sandwich b/c it's been touched, won't eat things that have been touched at times), very particular about how clothing feels, etc. She started a tic this spring where she twitches her nose, and also has been sniffing her fingers for a while (and does some weird finger straightening thing right before sniffing). About 3 or 4 months ago, she started to always be rubbing her scalp (my mom and I do this--possibly trichotillomania in some form?).

 

On June 24th, she ran the fever, and within a week of it, she was doing the nose/mouth twitch, but then adding a jaw movement, where she sticks her lower jaw out and sort of chomps 3 times right after the nose/mouth twitch. Also a head shake (fast then slow), finger stiffening/fluttering, arm stretching. She’s blinking her eyes funny and raising her eyebrows, and also opening her eyes real wide in a stare. Now there's even a little tongue thing where she licks her lips. She just added a toe stretch and kicks her knee so her heal comes up. This week she’s added this thing where she shakes her arm(s) or leg(s). She is also doing a strange staring gaze off to the side, where she does it over and over (she also does this with her eyes). She does seem to be more hyper, but also spaces out/gazes sometimes. Now the tics seem to all come at once, like she'll run through the whole line of them in a spurt, like they are almost deliberate, then take a break.

 

I have heard a bit about PANDAS, but not sure what really is done for that—antibiotics seem irrelevant when there is no active illness, and I doubt I’d go through plasma exchange, etc. Plus, where do I start with that one?? But at the same time, my “normal” little girl at the beginning of the summer is like a totally different person now, ticcing all the time. She stops ticking when she is very focused, like when she’s drawing. TV watching is the worst!

 

I am concerned that I might mess too much with her brain chemistry by interfering with it (friend of mine who's son has MILD TS swears by 5-HTP), as my oldest daughter outgrew her tics after about a year (see below). At the same time, I don't want her to suffer. I think it bothers me more than her--in fact, I feel horrible, because one day I just got angry at her and imitated her, and I can tell she’s looking at me to see if I’m looking at her. Any time I look at her, and even her sibs, now she says "What?" I feel horribly guilty about this, as she has always been my "baby" who snuggles with me, and no longer does since starting the tics. Although she is very clingy to me. My friend swears 5 HTP is the answer, but not really sure how that would help Tourette's??

 

I have 4 kids, and when my oldest daughter was 7, she started having a few really complex tics--bending over at the waist, pushing her belly out and in--really weird-looking stuff. She did an occasional are straighten and neck thing, and some toe curling. I video-taped her, and showed it to a pediatrician who has 2 sons with TS. He said you only medicate if it's affecting the child physically, emotionally, socially or academically. So we waited. She finally subsided with these tics after about a year, but still has some mild OCD. (She was on and off Zoloft from the time she was 5 until about 9). Evening up--scratching one side, then the other, touching things with both hands. In fact, all 4 of my kids do that. They are all sensitive to tags, socks, etc. My 3rd child also has had episodes of throat clearing, and wrist wringing---she is 8, and these seem to have stopped.

 

So, my questions are:

 

Do you know Tourette's to start so abruptly with an explosion of a plethora of tics? Or even Transient Tic disorder? I just wonder if this is a normal start to Tourette’s? or if there could be something related to her fever and it affecting her brain?

 

I don't know if I should bother with a doctor, since “children have to have motor/vocal tics for at least a year”... and then try to medicate after that point. As a mom, I feel like I want to do something, but don't know where to begin. I called our local Tourette Syndrome Assoc. (TSAGW) 4 weeks ago, but haven't heard back. My husband feels like we should not make a big deal out of it and just wait it out. It doesn't make him stressed or sad (I say, ignorance is bliss!) And would I go to a neurologist, psychiatrist, or some other doctor?

 

The fears as her mommy---is she happy, will anyone love her, will she be teased or thought of a a weirdo with mental problems? I know these things bug her a bit, because after a big long string of tics, she'll say "ugh, I'm tired."

 

I’m happy to hear anything you might be able to tell me. Thank you for listening, and for any insight.

Regards!

[Worried_Dad]

Welcome, and I hope you find the answers you need for your child!

 

Yeah, finding the diagnosis that makes you feel confident you're on the right path is so agonizing for these types of disorders. So many similarities in symptoms, so many different triggers. I think you're right to be suspicious of the ramp-up following an infection, though.

 

Nobody on here can diagnose your ds, but we can share our own experiences. My son, too, was diagnosed with transient tic disorder at one point following a very high fever (104). We, also, didn't test for strep because the school told us that flu was rampant and we assumed that's what it was. Several weeks later, our son started complaining of joint pain that moved from joint to joint, muscle weakness, gradually had more difficulty walking. At that point, the local doc suspected juvenile rheumatoid arthritis. Then 6 weeks later, our son started having severe seizure-like episodes that at times became more tic-like. That's when the JRA diagnosis started to morph into many other things, depending on the specialist we saw: transient tic disorder, TS (despite the lack of any vocal tic at the time - that came later), psychogenic movement disorder, GAD, etc.

 

Long story short: an LLMD tested for Lyme (negative), then diagnosed acute rheumatic fever with Sydenham's chorea after ASO titers came back highly elevated. Treatment dose of amoxil for months led to the tics subsiding. But once we stopped the abx, another infection triggered the worst symptoms ever (including vocal tic, massive OCD, anorexia, etc.) and diagnosis changed to PANDAS.

 

So - if you haven't already gone down this road - it may be beneficial (and give you peace of mind) to ask your doc to do some testing to eliminate a PITAND cause for your ds's symptoms. Strep testing (throat culture, ASO and Anti-DNAse B ), Myco P testing, and IGeneX Lyme testing might at least eliminate possibilities and make it easier to feel confident in the TS diagnosis.

 

Every situation is unique. Our son's OCD and tics (and many other PANDAS symptoms) became so completely debilitating that he had no quality of life. We were desperate, and that led us to 3 IVIG's and almost a year now of high-dose augmentin XR that have gotten him back to 95%. So - for us - the extremity of his condition made it critical to try new things. If your ds is functioning ok, I can see why you're torn about how many medical procedures to subject her to. And if your older daughter outgrew her tics without intervention, that makes it an even tougher call.

 

Overall, though, the testing seems minimally disruptive and provides some potential answers. If you have a cooperative doc, might be worth a shot. Best of luck!

Edited September 19, 2010 by Worried Dad

[EAMom]

I have a daughter who will be 7 in December, who suddenly developed a bunch of tics within a week of running a high fever for one night. There were a bunch of kids in the area who had that, and none of them had strep, so I didn’t take her in. She was totally fine the next morning.

 

This certainly sounds suggestive of PANDAS (or Pitands). It may have been undiagnosed strep (docs can be lazy about doing throat cultures if the children don't have "classic" symptoms)...or simply (esp. if she had already had pre-existing low grade OCD/pandas) a non-strep illness (viral, other bacterial) acting as trigger. My PANDAS dd reacted to both fifth's dz and H1N1 (she was already on long term antibiotics at the time.) Other PANDAS kids on this forum react to viruses, vaccines, allergies , and non-strep bacterial infections.

 

 

In any case, I am wondering if tourette’s can start so abruptly like this? My brother has Tourette’s and OCD, so I know it runs in the family.

 

I don't know either. However, I think it is possible that your brother has Tourettes, and your dd has PANDAS. Or, it is possible that your brother is actually undiagnosed PANDAS.

 

My daughter has been a bit OCD for as long as I can remember (won't eat the last bite of her own sandwich b/c it's been touched, won't eat things that have been touched at times), very particular about how clothing feels, etc. She started a tic this spring where she twitches her nose, and also has been sniffing her fingers for a while (and does some weird finger straightening thing right before sniffing). About 3 or 4 months ago, she started to always be rubbing her scalp (my mom and I do this--possibly trichotillomania in some form?).

 

There are a couple who post on this forum that deal with trichotillomia. Maybe they will chime in. I think there was a recent discussion on this I suppose the rubbing of the scalp could also be a tic or compulsion.

 

My PANDAS dd also had some low grade OCD/anxiety/sensory issues for years before her big "PANDAS explosion" when she was 7.5 years old (2nd grade). At that point she got a strep infection, just had a FEVER (no sore throat!) so we didn't bring her in. I learned later that kids in her class were out sick with strep on the same day. It turns out, when we throat cultured her 2 mo. later (in the hospital with acute anorexia, ocd, dropped from 50 pounds to 42 pounds, mild tics) she was strep throat culture positive. Her younger sister was also positive (rapid strep test). Neither child had TYPICAL SIGNS OF STREP (red throat, etc).

 

 

 

 

I have heard a bit about PANDAS, but not sure what really is done for that—antibiotics seem irrelevant when there is no active illness, and I doubt I’d go through plasma exchange, etc. Plus, where do I start with that one?? But at the same time, my “normal” little girl at the beginning of the summer is like a totally different person now, ticcing all the time. She stops ticking when she is very focused, like when she’s drawing. TV watching is the worst!

 

That sounds *very* PANDAS-sy to me....that your dd is a totally different person verses a couple of months ago.

 

AS far as there being "no active infection"...that can be difficult to determine. Many on this forum find relief (often with extended, full-strength antibiotics) with antibiotics the absence of obvious "active infection". Perhaps the strep is hiding out in low levels (a bit like Lyme) intracellular, and that is whey the antibiotics matter. Just b/c strep isn't easily cultured doesn't mean it's not there. Also, I suspect (as well as others on this forum, and my immunologist ) wonder if PANDAS kids benefit from the anti-inflammatory effect of antibiotics (esp. Azith.).

 

I am concerned that I might mess too much with her brain chemistry by interfering with it (friend of mine who's son has MILD TS swears by 5-HTP),

 

I agree, esp. if it doesn't address the underlying cause of tics/beh. change (if it is PANDAS--infection, anti-bodies, auto-immune problem). Certainly if it is not PANDAS, and the underlying cause of tics cannot be found, and symptomatic treatment helps, I think your friends suggestion if worth considering.

 

as my oldest daughter outgrew her tics after about a year (see below).

 

That is lucky! One has to wonder if she had mild PANDAS or something else? How old was she when she outgrew her tics? I do wonder how many kids who are diagnosed with "transient tic disorder" are actually mild PANDAS (which they are lucky and outgrow).

 

At the same time, I don't want her to suffer. I think it bothers me more than her--in fact, I feel horrible, because one day I just got angry at her and imitated her, and I can tell she’s looking at me to see if I’m looking at her. Any time I look at her, and even her sibs, now she says "What?" I feel horribly guilty about this, as she has always been my "baby" who snuggles with me, and no longer does since starting the tics. Although she is very clingy to me.

 

It sounds like this is really affecting her life (and family life). How is she doing in school? I suppose it is all a gamble. Many PANDAS kids go from bad to worse before a diagnosis is made/treatment sought....so my opinion is clouded by my own child's #$%^& experiences and also some of the bad ones on this forum (I suppose those with kids with mild symptoms, don't really need the comfort and support of this forum). So, many of these kids are unable to function, unable to go to school (or function normally in school, or have an altered, ruined childhood).

 

 

I have 4 kids, and when my oldest daughter was 7, she started having a few really complex tics--bending over at the waist, pushing her belly out and in--really weird-looking stuff. She did an occasional are straighten and neck thing, and some toe curling. I video-taped her, and showed it to a pediatrician who has 2 sons with TS. He said you only medicate if it's affecting the child physically, emotionally, socially or academically. So we waited. She finally subsided with these tics after about a year, but still has some mild OCD. (She was on and off Zoloft from the time she was 5 until about 9). Evening up--scratching one side, then the other, touching things with both hands. In fact, all 4 of my kids do that. They are all sensitive to tags, socks, etc. My 3rd child also has had episodes of throat clearing, and wrist wringing---she is 8, and these seem to have stopped.

 

Wow. I think a very EASY place to start would be THROAT CULTURES of **all** your kids (and parents too). Do the 72 hour if the rapid is negative. While throat cultures can still be negative, even with PANDAS kids (and strep can hide out in other places, skin, sinuses, vaginal) it is a perfect place to start. After that you can worry about other tests (blood) as Worried Dad suggested.

 

Also, think about doing a Cunningham test ($400, tax-deductible, not FDA approved) on your dd. This test is fairly good at separating PANDAS tics from non-pandas tics (eg. tourettes).

 

 

 

Do you know Tourette's to start so abruptly with an explosion of a plethora of tics? Or even Transient Tic disorder? I just wonder if this is a normal start to Tourette’s? or if there could be something related to her fever and it affecting her brain?

 

Not sure if a preceding fever is a normal start to Tourettes. It certainly is typical of PANDAS.

 

As a mom, I feel like I want to do something, but don't know where to begin.

throat cultures in all family member

 

*****PS you might find this FAQ thread useful!***** esp. info. on antibiotics http://www.latitudes.org/forums/index.php?showtopic=6266

 

Also, where do you live? Maybe someone can rec. a doc if that will help.

Edited September 19, 2010 by EAMom

[MomWithOCDSon]

I have heard a bit about PANDAS, but not sure what really is done for that—antibiotics seem irrelevant when there is no active illness, and I doubt I’d go through plasma exchange, etc. Plus, where do I start with that one?? But at the same time, my “normal” little girl at the beginning of the summer is like a totally different person now, ticcing all the time. She stops ticking when she is very focused, like when she’s drawing. TV watching is the worst!

 

 

Hi!

 

Well, while I have to admit to knowing little about tics or TS, in particular, my DS and I have been through the wringer with OCD. And your first sentence really caught my attention:

 

"antibiotics seem irrelevant when there is no active illness."

 

I guess it all depends upon how you define "active illness." In PANDAS, tics and OCD behaviors ARE signs of active illness! And, in many (not all, of course) cases, antibiotics CAN have a dramatic impact, even without the classic medical illness symptoms like fever, sore throat, congestion, tummy pains, etc.

 

My DS13 has had OCD since 6 and never had any classic symptoms of strep, EVER. So we never treated him for strep. But when the OCD became debilitating last year and we found PANDAS, we proceeded with blood testing that demonstrated he was reacting to strep . . . just not in the classic way. Who knows how long he'd had it? But once we started antibiotics, his OCD behaviors began to step down and strip away.

 

Personally, I don't think that hereditary and PANDAS/PITANDS components of TS or OCD have to be mutually exclusive. My DS13, like your DD, has some hereditary markers for his OCD on both sides of the family. He also had some sensory issues (picky about clothes) and other "quirky" behaviors that sound very similar to your description of your DD. But it seems clear to me now, in retrospect, that it was the infectious agent (in our case, strep) that set the OCD in motion in a major way. And the antibiotics have helped reduce those behaviors over time.

 

I might also add that, if you run a search here in the PANDAS forum for antibiotics, you'll see a number of threads with research and links discussing some other characteristics of antibiotics that may be coming into play for our kids. The fact that they can, in addition to fighting infection, contribute to immune modulation, glutamate modulation and decreasing inflammation.

 

In the end, I would join WorriedDad and EAMom in encouraging you to have a few simple tests runs. They don't represent a major investment in time or money, or in trauma to your DD, but they may point you in a more definite direction in the end. Could it be "standard TS"? Maybe. But information is power, so you'll be better armed to help your DD, it seems to me, if you gather everything reasonably possible in your search to help her.

 

Good luck!

[eljomom]

Yes, that is part of the problem, is finding a competant doc. I love our pediatrician, but when I brought it up with him, he said his last patient has Tourette's, and every time the boy gets a virus, his mom rushes him in to have him tested for strep. Sometimes it is, and sometimes it isn't. He then swabbed my daughter's throat (over a month after resolution of her one-night fever), which of course was negative. He said we could take her to a neurologist to make sure it wasn't some sort of seizures she was having. We just switched our insurance to a very high deductible on sept. 1. Sure wish I'd done some if this prior:(

Can I ask what kind of dr. usually has knowledge of Tourette's AND PANDAS/PITANDS? who will make an educated decision about things based on that expertise?

Also, what is Myco P testing? Never heard of that one.

Thanks so much for your input. I'm so sorry you have had to go through this and feel the pain on behalf of your child...that's the hardest part---the pain we feel for them.

 

 

\

Welcome, and I hope you find the answers you need for your child!

 

Yeah, finding the diagnosis that makes you feel confident you're on the right path is so agonizing for these types of disorders. So many similarities in symptoms, so many different triggers. I think you're right to be suspicious of the ramp-up following an infection, though.

 

Nobody on here can diagnose your ds, but we can share our own experiences. My son, too, was diagnosed with transient tic disorder at one point following a very high fever (104). We, also, didn't test for strep because the school told us that flu was rampant and we assumed that's what it was. Several weeks later, our son started complaining of joint pain that moved from joint to joint, muscle weakness, gradually had more difficulty walking. At that point, the local doc suspected juvenile rheumatoid arthritis. Then 6 weeks later, our son started having severe seizure-like episodes that at times became more tic-like. That's when the JRA diagnosis started to morph into many other things, depending on the specialist we saw: transient tic disorder, TS (despite the lack of any vocal tic at the time - that came later), psychogenic movement disorder, GAD, etc.

 

Long story short: an LLMD tested for Lyme (negative), then diagnosed acute rheumatic fever with Sydenham's chorea after ASO titers came back highly elevated. Treatment dose of amoxil for months led to the tics subsiding. But once we stopped the abx, another infection triggered the worst symptoms ever (including vocal tic, massive OCD, anorexia, etc.) and diagnosis changed to PANDAS.

 

So - if you haven't already gone down this road - it may be beneficial (and give you peace of mind) to ask your doc to do some testing to eliminate a PITAND cause for your ds's symptoms. Strep testing (throat culture, ASO and Anti-DNAse B ), Myco P testing, and IGeneX Lyme testing might at least eliminate possibilities and make it easier to feel confident in the TS diagnosis.

 

Every situation is unique. Our son's OCD and tics (and many other PANDAS symptoms) became so completely debilitating that he had no quality of life. We were desperate, and that led us to 3 IVIG's and almost a year now of high-dose augmentin XR that have gotten him back to 95%. So - for us - the extremity of his condition made it critical to try new things. If your ds is functioning ok, I can see why you're torn about how many medical procedures to subject her to. And if your older daughter outgrew her tics without intervention, that makes it an even tougher call.

 

Overall, though, the testing seems minimally disruptive and provides some potential answers. If you have a cooperative doc, might be worth a shot. Best of luck!

[EAMom]

Can I ask what kind of dr. usually has knowledge of Tourette's AND PANDAS/PITANDS? who will make an educated decision about things based on that expertise?

 

While most neurologists see a lot of patients with tics, most know little about PANDAS (or don't "believe" in PANDAS). Two exceptions (pediatric neurologists who know about PANDAS) would be (popular docs on the forum) would be Dr. Trifiletti (NJ) and Dr. Beth Latimer (DC area).

 

Here is a thread on "helpful docs" http://www.latitudes.org/forums/index.php?showtopic=5023 Maybe you will find one in your area.

 

Where do you live? Maybe someone can suggest a doc or pm you with more detailed info. on a doc you are considering.

Edited September 19, 2010 by EAMom

[norcalmom]

Seems no harm to rule out pandas. My nephew has TS diagnosis for 3 years, and ADHD for 5 or so. Things were ok, but not great. I kinda coerced them into doing a cunninghams test, first, since hunting for the strep, or the Lyme, or the mycoP may take a while. Nephew had a score if 189, very high pandas range. He is almost 14 and very excited that maybe there us something that will help him besides about a 60? Percent chance he will out grow it. He also has horrible sleep, but not significant OCD.

 

They have seen specialists on both coasts before getting his TS dx. No mention of pandas, for some reason the neurologists sem to be far behind. They heard about pandas from me, my son was dx'd pandas(by a pandas aware doctor, who is also specialist in childhood OCD).

 

I'd highly suggest the cunninghams test mentioned above, and getting cultures and titers for your dd. If those tests do turn something up, at least u have some simple direction to take to protect her health, rather than waiting and hoping.also, she is young, and her case does not sound incapacitating, so u have a good chance of nipping it in the bud before it gets worse.

 

My ds had sort of sudden onset(over a couple months) and was still functional, but we could tell that with each illness his baseline would get worse. He is 11, we did ivig, 7 weeks ago, and I've had such joy the last 2 days to sit in the stands for 5 baseballgames -he's playing in a tournament-and I've nit seen one tic, or, glance into the sun, which was a compulsion we've seen him do for several months before ivig.

 

U can find the Cunningham study info, and read the study by googling her name and molecular mimicry and pandas. Her CONTROL groups have TS, normal sera, and "regular" OCD. So it should be good test for your daughter.

[Worried_Dad]

Also, what is Myco P testing? Never heard of that one.

 

Myco P is Mycoplasma pneumoniae - a bacterial infection in the broader "PITAND" category that can cause PANDAS-like symptoms.

[eljomom]

Oh, I am so utterly confused now....i just rabbit-trailed on links and saw "herx" and "camK" and all sorts of words that are overwhelming me....a whole new can of worms I haven't opened...

How do I get these tests done?

Also, it worries me that it seems like antibiotics help for a bit ,then you have to go back on them....questionable??

 

 

Seems no harm to rule out pandas. My nephew has TS diagnosis for 3 years, and ADHD for 5 or so. Things were ok, but not great. I kinda coerced them into doing a cunninghams test, first, since hunting for the strep, or the Lyme, or the mycoP may take a while. Nephew had a score if 189, very high pandas range. He is almost 14 and very excited that maybe there us something that will help him besides about a 60? Percent chance he will out grow it. He also has horrible sleep, but not significant OCD.

 

They have seen specialists on both coasts before getting his TS dx. No mention of pandas, for some reason the neurologists sem to be far behind. They heard about pandas from me, my son was dx'd pandas(by a pandas aware doctor, who is also specialist in childhood OCD).

 

I'd highly suggest the cunninghams test mentioned above, and getting cultures and titers for your dd. If those tests do turn something up, at least u have some simple direction to take to protect her health, rather than waiting and hoping.also, she is young, and her case does not sound incapacitating, so u have a good chance of nipping it in the bud before it gets worse.

 

My ds had sort of sudden onset(over a couple months) and was still functional, but we could tell that with each illness his baseline would get worse. He is 11, we did ivig, 7 weeks ago, and I've had such joy the last 2 days to sit in the stands for 5 baseballgames -he's playing in a tournament-and I've nit seen one tic, or, glance into the sun, which was a compulsion we've seen him do for several months before ivig.

 

U can find the Cunningham study info, and read the study by googling her name and molecular mimicry and pandas. Her CONTROL groups have TS, normal sera, and "regular" OCD. So it should be good test for your daughter.

[EAMom]

Oh, I am so utterly confused now....i just rabbit-trailed on links and saw "herx" and "camK" and all sorts of words that are overwhelming me....a whole new can of worms I haven't opened...

How do I get these tests done?

Also, it worries me that it seems like antibiotics help for a bit ,then you have to go back on them....questionable??

 

Here is an early thread that is a bit of an intro to the Cunnnigham test http://www.latitudes.org/forums/index.php?showtopic=4834&start=0&p=33300&fromsearch=1entry33300

 

CaM kinase activation is something that is measured in the Cunningham test. If it falls above a certain range it is suggestive of PANDAS. Results below a certain range (100 or so) is more suggestive of tics (non-pandas)/tourettes.

 

Herx is something that people talk about with Lyme disease (mainly). I believe it refers to certain symptoms worsening with antibiotics...perhaps b/c bacteria is dying off or being released. (Someone will correct me on that....)

[EAMom]

PS. This link of FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 has a section on antibiotics as well as a section on the Cunningham (anti-neuronal antibody) test. Scroll about 1/3-1/2 way down.

[eljomom]

Thanks for explaining that. Can I ask my pediatrician to order the Cunningham test? Would he also run the anti-strep titres? If not him then who runs those??

 

 

Oh, I am so utterly confused now....i just rabbit-trailed on links and saw "herx" and "camK" and all sorts of words that are overwhelming me....a whole new can of worms I haven't opened...

How do I get these tests done?

Also, it worries me that it seems like antibiotics help for a bit ,then you have to go back on them....questionable??

 

Here is an early thread that is a bit of an intro to the Cunnnigham test http://www.latitudes.org/forums/index.php?showtopic=4834&start=0&p=33300&fromsearch=1entry33300

 

CaM kinase activation is something that is measured in the Cunningham test. If it falls above a certain range it is suggestive of PANDAS. Results below a certain range (100 or so) is more suggestive of tics (non-pandas)/tourettes.

 

Herx is something that people talk about with Lyme disease (mainly). I believe it refers to certain symptoms worsening with antibiotics...perhaps b/c bacteria is dying off or being released. (Someone will correct me on that....)

[eljomom]

Ugh, just did bedtime, with little one sitting on my lap while reading and her twitching away--makes me very anxious! Anyhow, in regards to the ASO and the other strep titre, we are almost 3 months out from the fever, so are we past the point of even testing for those? It said one peaks 1-3 weeks and the other 6-8....or something like that..

 

Oh, I am so utterly confused now....i just rabbit-trailed on links and saw "herx" and "camK" and all sorts of words that are overwhelming me....a whole new can of worms I haven't opened...

How do I get these tests done?

Also, it worries me that it seems like antibiotics help for a bit ,then you have to go back on them....questionable??

 

Here is an early thread that is a bit of an intro to the Cunnnigham test http://www.latitudes.org/forums/index.php?showtopic=4834&start=0&p=33300&fromsearch=1entry33300

 

CaM kinase activation is something that is measured in the Cunningham test. If it falls above a certain range it is suggestive of PANDAS. Results below a certain range (100 or so) is more suggestive of tics (non-pandas)/tourettes.

 

Herx is something that people talk about with Lyme disease (mainly). I believe it refers to certain symptoms worsening with antibiotics...perhaps b/c bacteria is dying off or being released. (Someone will correct me on that....)

[EAMom]

You have to order the kit directly from the Univ. of Oklahoma (Dr. Cunningham--there is info. on the link to the thread on the cunningham test by Worried Dad).

 

The kit has instructions, ice packs (put in freezer until ready to fed ex serum), tubes, and some packing material for shipping the serum.

 

We had the blood drawn and spun down at the lab in our ped's medical group. You can ask your ped about getting blood drawn for the study. You might draw all of this at once (with strep titers) so your child doesn't have to have more blood draws than needed. Strep titers are something your ped can order.

Edited September 20, 2010 by EAMom

[EAMom]

The FAQ thread has lots of info. on strep titers. In some kids, the titers drop very slowly, so it is possible they are still elevated. They might also still be elevated if there is a ongoing/lingering strep infection hiding out.

 

Strep titers are just a piece of the puzzle...lots of PANDAS kids have low titers. However, if they are high, that might be some evidence of a past strep infection.