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[justinekno]

deleted

[thereishope]

How's this for an explanation, it's from Buster's FAQ sheet...

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

Tests: Antineuronal Antibodies Tests

 

Q: What are Cunningham tests?

A: Kirvan and Cunningham have been studying specific antibodies to GABHS. Cunningham has an open trial where she is recruiting patients to investigate the relationship between these antibodies and PANDAS symptoms. Many parents on this forum have participated in the study. These studies are still research studies and are not yet diagnostic for PANDAS -- but we're all hopeful they might be soon.

 

Q: What are CaM Kinase II tests?

A: These tests are also known as Cunningham tests on this forum (see above). In 2006, Kirvan and Cunningham found that specific antibodies to GABHS in the blood serum of PANDAS and Sydenham Chorea patients interacted with neuronal tissue causing a reaction known as CaM Kinase II activation. CaM Kinase II is part of a series of reactions that lead to dopamine release by neuronal cells. The activation of CaM Kinase II by an antibody indicates that if the antibody can cross the blood-brain barrier, it could interfere with dopamine regulation potentially causing a form of dystonia. It is important, however, to highlight that this is a research trial and the accuracy, specificity and repeatability of the test is not yet known.

 

I also recently posted an email update from Sept 2009 with notes from PANDAS Network on Cunningham's study. Maybe that would be useful?

 

So right now your son isn't on any meds, correct? If you feel at some point certain in your heart it is PANDAS, would you use prophylactic antibiotic or are you pretty much against the use of a daily antibiotic to prevent strep in your son's case? When is the doctor appointment? How is your son's behaviors and/or tics right now?

[justinekno]

This should work. Thank you. If we really, really felt it was PANDAS, yes, I would use the antibiotics. Our appt is this coming Wednesday and my son is not on any meds right now. His tics are still less than they were and mood is good. Yesterday he did a report on Ancient Rome which he would never have done without complaining and whining a few months ago! We're only day 2 without antibiotics though so too soon to tell.

 

So right now your son isn't on any meds, correct? If you feel at some point certain in your heart it is PANDAS, would you use prophylactic antibiotic or are you pretty much against the use of a daily antibiotic to prevent strep in your son's case? When is the doctor appointment? How is your son's behaviors and/or tics right now?

[thereishope]

Okay. Let me sort this out. he was on antibiotics for a month and you see improvment with behavior and tics. maybe not 100% better but an improvement. To give a timeline, a child's first PANDAS exacerbation, if caught in a timely manner, may last about 4-10 weeks. So, I wouldn't be surprised that you wouldn't have reached your optimal potential for improvemnt on antibiotics alone yet. But, since you have seen improvement w/in 30 days, I do think that is a good indicator, esp when people say tics are the hardest to get rid of.

 

In addition to tests, make sure you fololw your gut too. It's a great indicator in itself.

[justinekno]

Can you explain exacerbation in relation to PANDAS? My son has had these same behaviors, expecially the tics, for going on 7 yrs now so I don't know that we could pinpoint any type of exacerbation. Maybe I'm not understanding what exacerbation means.

 

To give a timeline, a child's first PANDAS exacerbation, if caught in a timely manner, may last about 4-10 weeks.

[peglem]

Can you explain exacerbation in relation to PANDAS? My son has had these same behaviors, expecially the tics, for going on 7 yrs now so I don't know that we could pinpoint any type of exacerbation. Maybe I'm not understanding what exacerbation means.

 

To give a timeline, a child's first PANDAS exacerbation, if caught in a timely manner, may last about 4-10 weeks.

An exacerbation would be a sudden worsening in intensity and/or frequency of tics and/or OCD behaviors...or any of the other PANDAS symptoms (ie..urinary frequency, separation anxiety, rages, etc.) for a period of time. Has your son had those behaviors/tics steadily for 7 years, w/o any worse/better periods?

[kimballot]

An exacerbation would be a sudden worsening in intensity and/or frequency of tics and/or OCD behaviors...or any of the other PANDAS symptoms (ie..urinary frequency, separation anxiety, rages, etc.) for a period of time. Has your son had those behaviors/tics steadily for 7 years, w/o any worse/better periods?

 

 

Yes... and it is important to go back and look to see if there was a pattern to those worse / better periods over those 7 years. Was it seasonal? (it could be allergy related) Did the tics worsen after a cold or flu or after someone else in the family had strep? You may be able to look at dates of doctor visits for colds and such (get these from the doctor) and also look at old school papers to judge handwriting or look at test scores and see if there is a relationship. You may also have old emails from teachers about behavior or school problems that you could use to see if there is a correlation.

[nevergiveup]

With a seven year history of tics, and changes in behavior that fluctuate, I would do the test. If he has auto brain antibodies, this will at least help you to continue PANDAS treatments rather than do TS treatments. I think it is a starting point and helps to set your treatments in the right direction. I am somewhat confused, is your doc recently thinking pandas with one month of Pen VK after seven years of tics? Some kids have severe up swings and downs, some get sick and continue to stay sick. These are the ones that tend to need more treatment and intervention.

 

Cunninghams test are a very good start. She is a well published scientist with the respect of many immunologists in this country. Her tests may be preliminary, but immunologists notice when your kid has high auto brain antibodies. However this type of study may be way over your pediatrician's head. As my pediatrician said, "this stuff is leading edge science." Also I had one leading university immune doc tell my suburbian immune doc that he felt these tests were great science, very new science and what we do with them is still under review. But if your child has tics, and auto brain antibodies, it will lead docs down the path to assume that his tics are immune mediated and his treatment may change. Further investigation into his immune system may be warranted. ABX at higher levels may be prescribed in future illness. Your docs will definately look harder and longer with any increase in symptoms.

 

If you ever need the support of the top PANDAS doc's having this test data will just add to the bigs picture justification to initiate treatment. I personally feel if you can afford the test it is well worth it. Without this test my dd would have gone the psychiatrist route, I would never have know she had an autoimmune illness. I would still be telling her that her fears are all in her head. And she wouldn't be receiving treatment for autoimmune disease and immune deficiency.

[thereishope]

One other question I would throw in there, is over the last 7 years, has your child been on antibiotics prior to the penv?If so, do you ever remember thinking "hey, the tics are doing better, wonder why". It's time to really rack your brains and try to remember.

 

Also, I don't think in between an exacerbation, or extreme worsening of symptoms, I am looking for you to say he went to completely no tics, but if there were noticeable, dramatic fluctuations in behaviors and/or tics.

 

I think you will feel better if you do the Cunningham test for your child. Like nevergiveup said, if you have the money, do it.

[justinekno]

We started seeing this dr last October. Before then we were seeing a neurologist. I started reading about PANDAS at about the same time our new integrative dr mentioned looking into PANDAS. Our first priority was to heal his gut and set him up on a regimen of supplements/antibiotics after stool and urine testing showed high levels of bad bacteria (strains of streptococus and low levels of good bacteria.

 

With a seven year history of tics, and changes in behavior that fluctuate, I would do the test. If he has auto brain antibodies, this will at least help you to continue PANDAS treatments rather than do TS treatments. I think it is a starting point and helps to set your treatments in the right direction. I am somewhat confused, is your doc recently thinking pandas with one month of Pen VK after seven years of tics? Some kids have severe up swings and downs, some get sick and continue to stay sick. These are the ones that tend to need more treatment and intervention.