OK Everyone...do i laugh or cry like i'm doing

[Fixit]

Remember when i said ds camk came back at 105 back in november.....

and everyone said stay positve...and eamom said there was 1 kid with a low score below ds that was still pandas

and then i think buster found the paper about taurine effecting camk...

and i went back to check ds aminos and they as per the progam i was doing....

i will say that ds was better at that point.but not great.....

 

well his draw from 4/22 just came back

Cam Kinase II score 160

 

so was the taurine just masking he number....

was the taurine helping....

was it just holding it at bay...because to me we've only gotten worse since onset....

would our reading have been lower at onset...or was it just dropped during taurine use

 

i think who ever found that paper needs to forward it to cunningham...i did once i saw it, in regards to my son, Alverez said i could retake test(which i did per scott persuading me, i was concerned i wouldn't see anydifference...and i still held the belief that regardless of number my ds is pandas)...

Anyway i don't know how much weight i hold

 

and what i want to say is no matter what the number is, you know your kid, you can't just rely on tests, is what i want to scream....

 

AGAIN what do i do with this... ANd i want to scream...don't leave out the kids with TICS...if he has any ocd it shows up as compulstive tics(maybe) and he doesn't like his clothes tight...Otherwise he is funny, smart and good at school, with some add/adhd issues, that he seems to have grown? out of mostly...i think...

 

What do i do with this info??? again sorry i am so tired....

[saidie10]

so sorry you are feeling sad/worried/confused today! i hope some of the others on the board have some good answers for you today to ease your mind. i am so new i don't even know what the Cunningham test is or what Cam Kinase II is! i am learning so much on this board though so I am sure someone can offer some good advise!

 

Remember when i said ds camk came back at 105 back in november.....

and everyone said stay positve...and eamom said there was 1 kid with a low score below ds that was still pandas

and then i think buster found the paper about taurine effecting camk...

and i went back to check ds aminos and they as per the progam i was doing....

i will say that ds was better at that point.but not great.....

 

well his draw from 4/22 just came back

Cam Kinase II score 160

 

so was the taurine just masking he number....

was the taurine helping....

was it just holding it at bay...because to me we've only gotten worse since onset....

would our reading have been lower at onset...or was it just dropped during taurine use

 

i think who ever found that paper needs to forward it to cunningham...i did once i saw it, in regards to my son, Alverez said i could retake test(which i did per scott persuading me, i was concerned i wouldn't see anydifference...and i still held the belief that regardless of number my ds is pandas)...

Anyway i don't know how much weight i hold

 

and what i want to say is no matter what the number is, you know your kid, you can't just rely on tests, is what i want to scream....

 

AGAIN what do i do with this... ANd i want to scream...don't leave out the kids with TICS...if he has any ocd it shows up as compulstive tics(maybe) and he doesn't like his clothes tight...Otherwise he is funny, smart and good at school, with some add/adhd issues, that he seems to have grown? out of mostly...i think...

 

What do i do with this info??? again sorry i am so tired....

[Doug]

Hello,

We did not do the cam test but we ran ALL of the blood tests

and on paper ore daughter looked great....

But we know she has PANDAS

we took her to do ivig with dr.k and we are 12 week post

and she is doing great..

I hold my breath when I say that

So... have you talk to Dr K?

Tracie

[Laurensmom]

I have no experience with pandas tests/treatment, but I do have a cyber hug for you.

[kimballot]

Fixit - you must have such mixed feelings right now.

 

I want to thank you for being persistent with this and for sharing it with us. This is why we have to remember that cunningham's test is still in the resaerch stages and we are all part of this development.

 

I want to make sure I have this straight - you tested your son in November and his CamK came out at 105- and at the time he was taking taurine.

 

You then took him off taurine and his symptoms got worse

 

You retested in April (off taurine) and his Cam K was 160. Is that correct?

 

If it is, it sounds like you stumbled upon something very important in discovering that the Taurine may have changed your child's Cam K level. This is important becuase it shows that we need to be careful about what our kids take before they take the Cunningham test, and it also shows that the Taurine may have been helping your son.

 

Let me know if I have this right. Thanks!

Edited May 7, 2010 by kimballot

[Fixit]

Now that i've taken a breath...

i agree with faith in that this may not mark strep (but it may) it might just mean you are or were fighting something and your body can't stop...

 

but i wonder if the camK might be used in congjunction with that urinary neoptrin test...which is a inflammation or autoimmune marker...i forget how scott put it..

it's weird they are both high for ds

 

i'm gonna try to step away from the board for a couple of days(maybe just a couple more post )....i really need to get out of here if i can!!!!!

[dcmom]

Fixit- I am right there with you. My only answer is that the Cunningham test is a study- we have no conclusion yet.

 

I have 2 daughters.

 

Both had strep last March. One had major, overnight, debilitating ocd onset. The other had mild, but overnight onset of anxiety and stomachaches.

 

Finally tested both Cam Kinase in early August. The one that had debilitating onset was around 160ish. The other was 106ish (which threw us off of pandas for her for a couple months.) BOTH had very high anti neural antibodies (from Cunningham). Second daughter ended up becoming debilitated with ocd (pandas) after the flu (H1N1) and has responded very well to pandas treatment.

 

SO- does this mean cam kinase is NOT a great indicator, or does it mean when my dd was tested, she just was not so bad off. We haven't tested either again, and probably wont for a while(due to financial expense).

 

I think the test needs to be taken as one piece in the puzzle of a clinical diagnosis.

[peglem]

I was the one who found the taurine/CamK study. Thank you for sending it to Kathy Alvarez. (Truthfully, it never occurred to me to do so.) After I found that study it took me a week or 2 to get some taurine, but I've been giving it to my daughter for about 2 weeks. I have not seen an appreciable difference. I may try raising the dose...haven't decided yet.

 

In the mean time...I think your child's test results off/on taurine are very interesting (sorry its so frustrating).

[Fixit]

Good find on the taurine!!!! So i think maybe, its part of a puzzle for testing results and maybe treatment....

we were on taurine for a good 3 months...also per my sons labs it looked like he was already producing alot of taurine...

so based on what the other readings were( i gueess) they decided to add more....

 

I wonder if he is producing alot now, or if his body got tired and can't produce as much???

 

I'm just so tired of this...including the paperwork side....because i guess i'll have to go back to alverez again and let her know i'm the one with the new results, while off of the taurine...

my husband asks what i do all day...and i can't tell you.....i wake up, get the kids out, do this..(phone calls, emails, faxes, drs office waiting, digesting info ,<because like i say we are learning and sometimes guideing the docs too>, filling out forms) and then its the next day....it's georgeous here and i cant remember being outside since last year!!!!!

[bubbasmom]

I've never done the Cam tests on my son but we do have his strep titers done, and we NEVER have positive cultures and never have typical symptoms of strep, yet my son's strep titers are 720 for one and 1360 for the other (ASO and ANTI DNAS) is what I'm referring to.

YOU KNOW YOUR KID!!! If you think there's strep, change doctors, whatever, don't take no for an answer!!

[faith]

fixit,

could you tell more about the taurine? are you saying when you first had the test, your child was on taurine?

 

do the symptoms he had then correlate with these results? in other words, you say 106 in November,....were his symptoms mild at the time, all symptoms, tics? .....I am aware that your son's tics have ramped up considerably lately, so 160 I guess would correlate there. But you also know that you havn't necessarily had strep recently, so just saying again, really who knows what causes the activation, ...

 

well don't cry, maybe good to take a break, lol....

 

you could also email Kathy with any questions, maybe they hve some answers that we don't know yet...

[kimballot]

my husband asks what i do all day...and i can't tell you.....i wake up, get the kids out, do this..(phone calls, emails, faxes, drs office waiting, digesting info ,<because like i say we are learning and sometimes guideing the docs too>, filling out forms) and then its the next day....it's georgeous here and i cant remember being outside since last year!!!!!

 

Yes..I know. But you are on to something. We are building the ship as we sail it!! http://poetbabble.tumblr.com/post/19743102...p-as-we-sail-it

 

I think you are adding an important piece to the ship.

[norcalmom]

I agree with bubbasmom, but also - go for a walk. Take a hike tomorrow with a friend. The email will wait. Once you start down that rat hole its easy to get lost and forget to come up for air.

I had a hard time functioning when this started - I felt that any time I spent doing anything else was just wrong. I coulnd't enjoy it. I felt guilty. And, I felt as if, if I thought enough about this, and researched enough I could make him better. AND/OR if I didn't spend every waking moment researching, talking, watching, ds's every move or twitch, recording every thing he did-ate-was exposed to - to see if I could find a corelation, then he would get worse. Know I know that isn't the case. Take the weekend off, you deserve it.

 

I have a big fear that the cam II test will come back negative. I have the kit to do it, I decided to wait to see if there is another exacerbation...because at this point we aren't bad enough to do IVIG. And bcause the levels are lower if you aren't in exacerbation (this per Kathy Alvarez).

 

I assume you did the test in deciding if you would do IVIG/pex? At least now you have some confirmation about the path you are on.

[peglem]

Fixit, I'm curious, too, about your anti-neuronal antibody results from both Cunningham tests?

[Fixit]

I didn't get the new anti neurols back yet...the others were normal range

 

i have not gotten a postive strep culture in more than 2 years maybe 2 1/2...but let me explain

we would get strep, tic, abx, complete remsiison...8 or so times...

we would get an episode about 3 times a year, i don't think there was ever one , but mayb once, in the summer

since about 7 1/2-8 with new episodes, we would go to docs, ds is presenting with swollen glands, bad looking throat and even though quick culture neg, i would get abx do to sons past strep prone history...and as usual..10-14 days abx..i always thought i could see a softening 24 hours and a real drop 1-2 weeks, gone 4 weeks later.

i never had titers done till this year, onset this time was 4/6/09,,,we have been on the search ever since as we can not find strep, no doc would give us abx....

in the mean time i've tried many things, i just can't listen to neuro's and peds when i've mentioned this correlation more than a dozen times over his life with ds getting sick and tics and no correlatoin (ps we saw a doc on 4/5/09 as ds said he didn't feel good, doc did see swollen glands, etc, but no abx as quick strep was neg and i was ok with that as ds wasn't ticcing,,,but as all of you i was causious when he said he had lumps in his throat) next morning he wakes up ticcinn!!!

 

not till per doc k(then he went MIA) did we find myco p was very high and maybe that was his trigger a year ago....

the day ds started the pollen count was the highest on record till this year!!!

or maybe it was something else...and the more i know the more i realize that for ds it can now be anything!!! especially the the fact that the last 2 years the strep tests were neg....Or is the strep hiding like myco p and hide in any organ, and we just do have that kind of medical information yet..

 

yes faith...ds was much better back then...not normal, but i long for those days...

 

so i am going out on a limb and saying if you get anything above 100 something is not right...and even at that maybe the test is only a double confirmation...

YOU have to know your kid and presentatoin like doc k says...

 

PS ds has not been ill during this ramp up...only that pollen count has gone through the roof...

and we started a abx protocal with doc t in feb after myco results....I MAY HAVE some other correlaton to add to this in a couopole of days

Edited May 7, 2010 by Fixit