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Results of the CamKII test


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I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc.

 

robin

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I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc.

 

robin

 

Robin,

 

151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it.

 

Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point.

 

Good luck, Alex

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I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc.

 

robin

 

Robin,

 

151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it.

 

Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point.

 

Good luck, Alex

 

Now I understand the steroid burst! I would agree with Alex, Robin. You are putting the pieces of the puzzle together which is all you can do since there is no definitive test per say. Take what you have and forge ahead! Good luck!

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I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc.

 

robin

 

Robin,

 

151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it.

 

Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point.

 

Good luck, Alex

Dr. L was the same way for us - and we ruled out Celiac, Lupus, and Thyroid issues first. She seemed to give the CamK pretty equal weight with the clinical picture and response to steroids. Good luck!

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I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc.

 

robin

 

Robin,

 

151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it.

 

Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point.

 

Good luck, Alex

 

What exactly should I look for with steroid. My son didn't talk much in exacerbation. Now hat he is on the steroid he is hyper and asks a million questions. This would be positive, right? OCD is better and his emotional outbursts are not as violent.

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I got the results back for the CamKII. my sons number is 151. I was a little surprised about this as he was doing pretty good the week we had the blood drawn. So I guess i am asking if I can take this as confirmations that my son does in fact have PANDAS. he has all the symptons but has had negative titers everytime we have tested. During his last increase in symptons he did test positive for strep. He had not complained of a sore throat but his throat did appear red and had swollen tonsils. It has been a long road looking for answers and I want to feel confident that we have in fact found the answer to my sons 7 years of struggling with tics, OCD, anxiety, fears etc etc.

 

robin

 

Robin,

 

151 falls within the PANDAS range for CamII. I'd say that with your son's score and clinical symptoms of PANDAS, together you have about as good of an answer as you can get which is yes. However, Dr. K told me that he doesn't rely too heavily on the CAMKII score. For him, I believe, it is the combination of the history, clinical symptoms, and then the response to the steroid burst. If you get a positive response to the steroid burst then that seals the deal for Dr. K, as I understand it.

 

Certainly though, if I was in your shoes, I would pursue PANDAS full speed ahead at this point.

 

Good luck, Alex

 

What exactly should I look for with steroid. My son didn't talk much in exacerbation. Now hat he is on the steroid he is hyper and asks a million questions. This would be positive, right? OCD is better and his emotional outbursts are not as violent.

 

I think all you are looking for is some degree of positive response, large or small. Prednisone suppresses the immune system. If the symptoms your child has improve when their immune system is suppressed, it says the symptoms are autoimmune in nature, confirming the PANDAS diagnosis.

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I've been kind of wondering about this too...just got my non-pandas dd's CamKII score back...142. If I am reading it correctly, it falls in pandas range also. Am I right? In fact it is only 8 points below my ds10 during extreme exacerbation. Not too many symptoms, just little things I can put together with 20/20 hindsight, and the only over the top symptom that causes problems and seems abnormal on occassion is irritability, and defiance. It also seemed to increase with my son's impetigo. So add that to the familial aspect and I guess we will see. We see Dr. L for her in August so I guess in the meantime I'll get my ped. to run all those tests mentioned. It never stops does it?

Sarah

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