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Cunningham - Just sent


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We just got word yesterday - 167. For me, it's the last feather I needed for my "you're not a crazy,paranoid, self-diagnosing, in-denial about your son's mental health mom" cap . I think I might just email that score to the dr. who told me not to waste my time and money with this... By the way - I wanted to publicly say that Kathy Alvarez is AMAZING! Despite a long day at work, she took our results home with her so she could calculate them and get them emailed out to me by the end of the day. Her email came in at 11:30 at night (her time)- and then another 3 hours later - 2:30 in the morning! Seems like lately I've been coming across more and more very kind health professionals that are going out of their way to try and be helpful. This is just amazing to me after the months I spent jumping up and down screaming for ANYONE to understand and help.

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Ditto on Kathy Alvarez, our email came too well beyond business hours. She has been a great help, answers all my questions and promptly.

 

I hear you with the "last feather" needed, for us too it was one more thing even though the docs have said so, there have been no numbers and despite their assurance I still wanted to see this (is that bad?) I was worried it was going to be low! (is this bad too)

 

To moving forward for us all and healing!

Kay

 

 

 

We just got word yesterday - 167. For me, it's the last feather I needed for my "you're not a crazy,paranoid, self-diagnosing, in-denial about your son's mental health mom" cap . I think I might just email that score to the dr. who told me not to waste my time and money with this... By the way - I wanted to publicly say that Kathy Alvarez is AMAZING! Despite a long day at work, she took our results home with her so she could calculate them and get them emailed out to me by the end of the day. Her email came in at 11:30 at night (her time)- and then another 3 hours later - 2:30 in the morning! Seems like lately I've been coming across more and more very kind health professionals that are going out of their way to try and be helpful. This is just amazing to me after the months I spent jumping up and down screaming for ANYONE to understand and help.
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, there have been no numbers and despite their assurance I still wanted to see this (is that bad?) I was worried it was going to be low! (is this bad too)

 

Well, if it's bad, accuse me of the same thing....Despite a diagnosis 7 years ago, despite his year long remission after finally treating strep and getting a t&a, despite a positive PETscan showing inflammation of the basil ganglia and thalymus, despite my own "knowing' this is always triggered by illness, despite seeing improvement on antibiotics and steroids, despite our psychiatrist and psychologist (with 50 years + experience between them treating OCD) saying they have never seen something like this, I have been plagued by every strep test coming back negative this past year and the doubts of two PANDAS "experts" saying they thought my son did not have PANDAS - explaining away all the symptoms with such certainty... So prepared myself for the Cam # to come in low. It didn't, and I'm both validated and terrified at the same time...

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I just want to point out that high cam k does not necessarily mean PANDAS definitevely. all it means is there is something causing the cam k to rise, it does not prove that it is 'strep' connected, as in PANDAS......

 

I am pretty sure that those with autism, tourettes, etc. are also expected to come into 'the range'...I have no doubt that inflammation or autoimmune plays a part on those too, but again, it does not definitevely mean "PANDAS".....this test is still in the study stages and they are still in the process of trying to figure out what it means. when you participate in this test, you are participating in a 'study'...it is not yet used diagnostically for PANDAS.

 

Some of the discussion on this board is invaluable, but I think PANDAS is getting somewhat skewed, PANDAS is associated with 'strep'.......

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Some of the discussion on this board is invaluable, but I think PANDAS is getting somewhat skewed, PANDAS is associated with 'strep'.......

 

Skewed in what way? I'm not understanding what your point is with that statement.

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I don't know if I'm saying it right, but when we talk about autoimmune and inflammation and the other factors, I just mean that all those are not necessarily caused by 'strep' per se. understand? I just mean that the definition of PANDAS, the AS part is "associated with strep'........so in my opinion, other things can cause the symptoms and autoimmune response and inflammation, etc.....but it is not all caused by 'strep'.......

 

So basically, I'm saying that there are other things at play, and maybe one of hte reasons why PANDAS is dismissed by alot of docs, is bacause the strep component is not being able to be proved. maybe it is just 'something else'......and we've discussed all this around here. some of us have a hard time proving strep, so I'm just wondering if all this other stuff should be lumped into PANDAS....thinking we need another name....... I understand thats where the PITANDS comes in., but again, I'm thinking there could be other components to our kids symptoms that may not actually be 'strep' triggered.

 

So with this cam kinase results, it does not necessarily prove that strep is the culprit, it could be something else. that's all I'm suggesting. I think new members need to know that this test is still in the study stages and is not meant to diagnose PANDAS.

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I'm confused.....a lot of my posts begin with this phrase :)

 

I thought Dr. Cunningham's test did NOT rise with "typical" OCD, but did with PANDAS and SC. I thought that was the whole point?

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It seemed to be in those that were in the Swedo study, that was what seemed to be going on, but I don' believe it is definitive yet, that is why they are doing THIS study now, to compile data from those kids that are participating now and see what the consensus is....

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So Faith, are you saying that Dr. Cunningham's test cannot definitely be interpretted at this time to measure the activation caused only by strep as opposed to other infectious triggers BUT it can differentiate (by being "in the range") between infectious caused neuropsychiatric illness and NON-infectious caused neuropsych illness?

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Okay, I see what you're saying. And I agree that nobody is sure what things other than strep cause an increase in CamK activity. However, if the cross reactive antibodies to strep are found as well, the evidence for PANDAS seems a bit stronger. But, it does beg the question of whether the antigens that stimulate the production of those antibodies are also components of other pathogens. This is why I want to see the Cunningham study funded- we need the answers.

 

In our case, getting physicians to help, even though there was a clear temporal relationship to positive strep cultures and my daughter's psychotic behavior, did not happen until I had evidence from the Cunningham study indicating that there might be a connection. The pediatrician was already a believer, but this gave him something to share with specialists, other than just his speculation. I hope it has and will be just as useful for others.

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We just got word yesterday - 167. For me, it's the last feather I needed for my "you're not a crazy,paranoid, self-diagnosing, in-denial about your son's mental health mom" cap . I think I might just email that score to the dr. who told me not to waste my time and money with this... By the way - I wanted to publicly say that Kathy Alvarez is AMAZING! Despite a long day at work, she took our results home with her so she could calculate them and get them emailed out to me by the end of the day. Her email came in at 11:30 at night (her time)- and then another 3 hours later - 2:30 in the morning! Seems like lately I've been coming across more and more very kind health professionals that are going out of their way to try and be helpful. This is just amazing to me after the months I spent jumping up and down screaming for ANYONE to understand and help.

\Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out.

On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you?

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So Faith, are you saying that Dr. Cunningham's test cannot definitely be interpretted at this time to measure the activation caused only by strep as opposed to other infectious triggers BUT it can differentiate (by being "in the range") between infectious caused neuropsychiatric illness and NON-infectious caused neuropsych illness?

 

 

basically, yes. Autoimmune and inflammation and whatever it is that causes the cam kinase to rise, is not JUST from strep, it could mean something else. that's what this study is trying to prove or disprove, or at least connect some dots......

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We just got word yesterday - 167. For me, it's the last feather I needed for my "you're not a crazy,paranoid, self-diagnosing, in-denial about your son's mental health mom" cap . I think I might just email that score to the dr. who told me not to waste my time and money with this... By the way - I wanted to publicly say that Kathy Alvarez is AMAZING! Despite a long day at work, she took our results home with her so she could calculate them and get them emailed out to me by the end of the day. Her email came in at 11:30 at night (her time)- and then another 3 hours later - 2:30 in the morning! Seems like lately I've been coming across more and more very kind health professionals that are going out of their way to try and be helpful. This is just amazing to me after the months I spent jumping up and down screaming for ANYONE to understand and help.

\Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out.

On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you?

 

 

what it will show several different types of antibodies and in what range they are. for instance, my son had very high out of range (1200) anti-lysogangliosides antibodies present. what does it mean? who really knows? no one at present. it just suggests that he does have an abundance of these particular antibodies. when all the data is compiled, perhaps they will see a correlation into the type of symptoms that each child has and if there seems to be some common thread. maybe all those with high anti-lysogangliosides are those with tics, and maybe the other antibodies suggest more ocd, or other behavioral. ... I will add here that our score was 179, so pretty high, altho try as I might, I cannot definitevely prove strep is our culprit. my son's main symtoms are tics and some ocd.....

 

I have asked Dr. Latimer what it all means and she has said that at present, they really do not know yet.

 

I'm just putting this out there to make sure the right info is put out here and some do not get false hope. This is a study, and you are helping by participating in the study. If it helps with your overall diagnoses and treatment, all the better, but I do think everyone needs to be realistic....This may prove to be something very important in the future, just not yet.

Edited by faith
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After I posted this we got an email with a partial result score was 174 still reading about what it means and looking for Busters explanation.

 

 

I just got our's. I am still digesting it and trying to figure out our next move. My son's score was 167. We have done 4 weeks of penn which helped mood and handwriting but then we hit a plateau. We then did two weeks of Augmentin (per D r. T.) and that didn't seem to help either. We are also waiting on test results for repeat strep titers and more immunological tests.

 

 

Any one hear about Cunningham test yet?

 

Dr. T does not respond to my emails phone calls. He had my son on Biaxin and we finished the dose, now we are just left hanging. I have asked him what next? Do we take the second refill. He mentioned Raynaunds disease but never followed up. We live in NM so there is noone around. Very frustrated. Im not being negative but Im hoping he is alright.

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We just got word yesterday - 167. For me, it's the last feather I needed for my "you're not a crazy,paranoid, self-diagnosing, in-denial about your son's mental health mom" cap . I think I might just email that score to the dr. who told me not to waste my time and money with this... By the way - I wanted to publicly say that Kathy Alvarez is AMAZING! Despite a long day at work, she took our results home with her so she could calculate them and get them emailed out to me by the end of the day. Her email came in at 11:30 at night (her time)- and then another 3 hours later - 2:30 in the morning! Seems like lately I've been coming across more and more very kind health professionals that are going out of their way to try and be helpful. This is just amazing to me after the months I spent jumping up and down screaming for ANYONE to understand and help.

\Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out.

On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you?

 

 

what it will show several different types of antibodies and in what range they are. for instance, my son had very high out of range (1200) anti-lysogangliosides antibodies present. what does it mean? who really knows? no one at present. it just suggests that he does have an abundance of these particular antibodies. when all the data is compiled, perhaps they will see a correlation into the type of symptoms that each child has and if there seems to be some common thread. maybe all those with high anti-lysogangliosides are those with tics, and maybe the other antibodies suggest more ocd, or other behavioral. ... I will add here that our score was 179, so pretty high, altho try as I might, I cannot definitevely prove strep is our culprit. my son's main symtoms are tics and some ocd.....

 

I have asked Dr. Latimer what it all means and she has said that at present, they really do not know yet.

 

I'm just putting this out there to make sure the right info is put out here and some do not get false hope. This is a study, and you are helping by participating in the study. If it helps with your overall diagnoses and treatment, all the better, but I do think everyone needs to be realistic....This may prove to be something very important in the future, just not yet.

 

Okay. That helps. Thank You. My son has tics, ocd and some weird ups and downs with behavior. HIs toes have been giving him alot of problems lately. I do think it is related to strep but who know. They are white, turn red and hurt to walk. I massage them and it seems to help. I thought maybe it was shoes but soemdays they hurt when his shoes have been off for hours.

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