cam results back

[Fixit]

I haven't gotten written report in mail and i had these done in early November....tic onset 4/6/09

 

Anti-Lysoganglioside 2 hours

patient 160

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 500

positive control 8000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 2000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 8000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

 

then i go this email because i called...

"Cam score was 105 close to normal"

 

So to those smarter than me and that could be anyone....

 

when he would tic as a child i would immediately go to doc, find strep go on anti's and resolve completely 3-4 weeks...mmmaaayyyybbeee 5, EVERY TIME...(.always explosvie onset )

tic at 2 1/2 -5 was blink only 5-9 shoulder shrug only 9, jumping kicking self(bruising)hands, wrists ,shoulders, jaw juts, this week in can morph in hours, head twist, shake, today a parkinson's looking twitch??/

the last couple of years he tics /no positive culture..but docs would give anti's because he would get strep3-4 times a year

but i think viruses are starting to effect him and seasonal allergies are always brutal...(and again i'm sorry if i'm repetative just trying make story straight)

4/5/09 the day before onset...we were in the car 8 hours , i call for doc for baby who's pulling on his ears..

my ds says my i think i need him too( and my kids never complain)(pollen count highest i've ever seen)...doc sees ds and everything neck and above is inflamed or lumpy. then 4/6 arrives

4/7 i get cephalexin 250/5ml 2x for 14 days. he's 70-75 lbs...and we are still on our journey....

 

 

as per Chemar's finding this http://psychcentral.com/news/2009/08/12/an...r-ocd/7699.html

 

does this mean we triggered something permenant?

 

is pandas dx not an option for us any longer?

 

does this score take into account pitands?

 

Am i going to have a heart attack?

[KeithandElizabeth]

I heart goes out to you.... I know that feeling of your heart feeling broken.

 

Dr. Kovacevic would say to consider the clinical presentations and that the Cunningham test is still in study mode. I have read in other posts that he wonders if Tourette's and PANDAS may be one and the same.

 

I would try to set up a phone consultation with him.

 

Don't give up!!!!

 

Elizabeth

[sww817]

I wouldn't rule out PANDAS. My son's Cam was "normal" at a time when he was not having symptoms and Dr. L didn't even seem to bat an eye. Like Elizabeth said, this is still in study mode. There might be circumstances that affect these numbers that no one understands yet. If you look at our clinical picture, it is class PANDAS and so that is how Dr. L is proceeding.

 

I do understand though. I was shocked when the CAM was "normal" and felt kind of lost until I spoke to the doctor again. But when these doctors are not using this test as THE definitive test, you can't look at it like that either. Don't give up yet!!

[thereishope]

How was he at the time of the blood draw? When did he last have strep? Let me add, like your son, my son had a bad exacerbation when he had seasonal allergies last year too.

[Fixit]

Thanks, for the support.

 

During draw he was mild....

 

and not to drum....but we always had complete remission prior to now and no tics 4-5 months prior to this...(i thought we were home free) teaches you not to be happy

 

I didn't put eye blink to remission till about 2nd 3rd time or so......so his first streps lasted maybe longer than needed, i thought he was just sick....i've never had strep(my 2 younger never had strep) so this was my first kid and i didn't know. my dh gets strep easliy too(he blinks and head twist mild) dh had siezure at 5ish after picking and eaing strawberries in field,,farmer said they didn't use pesticides...of course this queston was asked after the fact and back then who was orgainic?(has blinked ever since) yes he eats strawberries.

and the 5yr old onset of shoulder thing was when 1st anti's didnt work and we had to to to hospital because his joints hurt and doc's said pencillian allergy (i now think rhuematic) and the dose was too low and we switched to something and tics were gone......maybe a different stain? i could tell new anti's were working when tics started to get better immediately....

Just about now is when i found pandas

 

ds last postive test i would guess could be 1 1/2 -2 years now...but i would still get anti's written if he had a shrug and they'd be gone 3-4 weeks.(viral?)

i would go if he didn't feel good because i'm so causous with him and get a script in case somethng started. and last coupe of years only had 2-3 episodes a year..and doc would always see something going on even if no pos culture.

 

I have no doc in GA who believes in pandas

I have famiy in NJ and VA...but $$$$ isn't coming in like its going out

 

Should i talk with dr K since he thinks its all related.

Should i do detox and which one...oh ps....did any of you catch a natureopath did his hair sample in May came up high , quite a bit out of range for arsenic.. the docs don't think hair samples hold water....and they didn't offer to do one...is there arsenic in shampoo?

who do i go to....don't they do hair samples for crime cases???

Maybe this is my next step ...someone please direct me(i'm toast)....how is the cheerleader getting better? do you have to get dystonia first?...is this it....and its just festering in his body????

OK i sound manic....OK I am

[mama2alex]

Hang in there. You will find the answers. I found this doctor on Beth Maloney's list:

 

Dr. M. Lisa Huber, MD

Peachtree Psychiatric Professionals

3500 Piedmont Rd NE # 775

Atlanta, GA 30305-1520

(404) 351-2008

 

Is she anywhere near you? Might be worth a try. Also, I agree a phone consult with Dr. Kovacevic in Chicago would be worth it.

 

 

Thanks, for the support.

 

During draw he was mild....

 

and not to drum....but we always had complete remission prior to now and no tics 4-5 months prior to this...(i thought we were home free) teaches you not to be happy

 

I didn't put eye blink to remission till about 2nd 3rd time or so......so his first streps lasted maybe longer than needed, i thought he was just sick....i've never had strep(my 2 younger never had strep) so this was my first kid and i didn't know. my dh gets strep easliy too(he blinks and head twist mild) dh had siezure at 5ish after picking and eaing strawberries in field,,farmer said they didn't use pesticides...of course this queston was asked after the fact and back then who was orgainic?(has blinked ever since) yes he eats strawberries.

and the 5yr old onset of shoulder thing was when 1st anti's didnt work and we had to to to hospital because his joints hurt and doc's said pencillian allergy (i now think rhuematic) and the dose was too low and we switched to something and tics were gone......maybe a different stain? i could tell new anti's were working when tics started to get better immediately....

Just about now is when i found pandas

 

ds last postive test i would guess could be 1 1/2 -2 years now...but i would still get anti's written if he had a shrug and they'd be gone 3-4 weeks.(viral?)

i would go if he didn't feel good because i'm so causous with him and get a script in case somethng started. and last coupe of years only had 2-3 episodes a year..and doc would always see something going on even if no pos culture.

 

I have no doc in GA who believes in pandas

I have famiy in NJ and VA...but $$$$ isn't coming in like its going out

 

Should i talk with dr K since he thinks its all related.

Should i do detox and which one...oh ps....did any of you catch a natureopath did his hair sample in May came up high , quite a bit out of range for arsenic.. the docs don't think hair samples hold water....and they didn't offer to do one...is there arsenic in shampoo?

who do i go to....don't they do hair samples for crime cases???

Maybe this is my next step ...someone please direct me(i'm toast)....how is the cheerleader getting better? do you have to get dystonia first?...is this it....and its just festering in his body????

OK i sound manic....OK I am

[Buster]

So here's what I got:

 

Your ds has had tics since he was 2.5

• 2.5-5 he had a blick tic
  
• 5-9 he had shoulder shrug
  
• 9 - jump, kicking self, jaw juts
  
• - now head twist, shakes
  

 

He also has significant allergies

 

Throughout the last few years he's been on antibiotics 3-4 x/yr due to symptoms (although no positive cultures). His tics in the past have gone into full remission following treatment with antibiotics.

 

In his current exacerbations your ds had significant inflammation of his neck lymph nodes indicating he had some infection.

 

----

Given that you've been seeing his exacerbations correlated with infections, you are wondering if the "normal" CaM Kinase II results indicate that he doesn't have PANDAS?

 

The short answer is we don't know. On the forum, we've seen that CaM Kinase II scores seem to be elevated when someone is in an exacerbation. Many of us have had a couple sample, and the numbers do seem to be higher in an exacerbation and "normal" when not in an exacerbation.

 

So, was your son having a significant tic exacerbation when you drew serum?

 

On the paper about passive transfer. That is a good paper, but its also really early and it is basically showing that antibodies do cross the blood-brain barrier (at least in mice) and cause behavioral changes. The key of the paper is that they were showing that a weakened blood brain barrier is one of the necessary conditions.

 

I'm not sure what to say except if his symptoms seem to remit with antibiotics terrific, stick with your program. Your case might end up being the one that helps find yet another antibody that wasn't known before.

 

Buster

[thereishope]

I'm thinking out loud. Could he have co-diagnosis? If that was the case, some of the issues would remain even w/ antibiotics or wax and wane w/o infection. But worsen dramatically w/ an infection (even though it is unknown what infection is causing it).

[EAMom]

Does your son have any other PANDAS symptoms (OCD, anxiety, handwriting issues, urinary issues, adhd?).

 

Do you or your husband have an hx of Rheumatic fever, MS, other autoimmune dz's in your family?

 

Do you notice any improvement on Ibprofen?

 

Please be aware that in Figure 3b of Cunningham's JNI paper, there was 1 pandas child who had a CaM kinase of 100. Another had a CaM kinase of 110.

 

I agree that the Cunningham tests are just a piece of the puzzle so you can't definitively rule PANDAS out for him based on that score.

 

Consider re-testing with Dr. Cunningham if there is a significant exacerbation.

[Fixit]

Thans again all, for giving me hope and that i guess there are endless possible causes...

 

mama thanks for doc

buster you are right..it always takes that first person to find something new....he was mild at time of draw

vickie i would accept a co-diagnosis anything to help...i just wish docs would go..."well anything is possible"

the only diagnosis is tics...no one believes in pandas...as far as his adhd, which i guess i'm glad, neuros want to hold off and see him grow before meds..i looked into it about 1st grade....i think he teeters on the brink especially since he is a solid B-A student but teacheers think he would honors if he could reel it in..

eamom....writing is TERRIBLE and gets worse with illness ,,,,we work on it but its a few docs and i think the teachers are willing to not have us focus on that....math is A+

he has tracking problems reading and he cans spell out loud but will transpose and mispell(obviously spelling is a family issue )

no i did not notice the 2 lower scores that keeps this option open i guess, i will have to go back ...thanks....

 

THyroid on both sides of fam....paternal grandm has lupus as well... that same side gets strep, allergies, eczema or was is psorisys, very mild arhritis , i think a brother my have had RF

 

Does your son have any other PANDAS symptoms (OCD, anxiety, handwriting issues, urinary issues, adhd?).

 

Do you or your husband have an hx of Rheumatic fever, MS, other autoimmune dz's in your family?

 

Do you notice any improvement on Ibprofen?

 

Please be aware that in Figure 3b of Cunningham's JNI paper, there was 1 pandas child who had a CaM kinase of 100. Another had a CaM kinase of 110.

 

I agree that the Cunningham tests are just a piece of the puzzle so you can't definitively rule PANDAS out for him based on that score.

 

Consider re-testing with Dr. Cunningham if there is a significant exacerbation.