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I thought the big deal in doing the CamKinase tests would be deciding when to do it. Wait for exacerbations or in remission. Little did I know the lab(s) were going ot give me such a hard time. I originally was going to do it at Stanford - Lucile Pacard Childrens Medical center becasue I had a lab order form from my immunologist to do some other tests and he likes their lab. Since WE don't like blood draws, figured all at one time better. I called ahead and they told me they would not process a kit to be sent out. Maybe there was a little communication problem, I'm SURE they do this, the woman just could not articulate what she needed in order to make it happen. Since Standford is 40 minutes away, and you have to register you child across the street before going ot the lab, I decided to try my local lab.

 

I called them and they told me they would do what I was asking for but needed an order from a California doctor. My immunologist (after a day of leaving messages with him and talking to his nurse twice) said he would not wrtie the order. I called our phychiatrist who writes our antibiotic script. She knows the test and wrote the order, faxed to the new lab.

 

Today I took ds to lab. They saw the kit and said "oh we only do kits that need to be sent out before 11:00am." Would not let me bring to fed ex (which ironically you can see from their doorstep). They send the kit to some central place then goes to fed ex. no one told me that. i made them check the kit to make sure they had everyting they needed to do the kit next time. And no, they did not - there was no "order" from Dr Cunninghamint the kit.

 

In addition, I had the lab tech take a look at the other tests the immunoloist ordered, and besides the fact that they need clarification on one of the tests (becasue they have two with that name..the Standford lab order from he gave me is non-standard) my son didn't weigh enough to do both the immunologists test and the cunninghams test at same time. AND one of those test needs to be done before 11:00am too.

 

The good news/bad new is my son has been doing as good as he ever has been since first exacerbation just over a year ago. He has had no tics for two days..and I asked him how he slept the other day and he said, "great, I've been sleeping really well the last few days"..maybe this is the universes way of telling me not to do the cunningham test at the moment. I decided to do the test at "baseline" but this is actually better than baseline.

 

Anyway, I'm venting. Now we have to pull him out of school again and go before 11:00 TWO MORE TIMES. Son not happy.

 

Just know exactly what you need for you lab before you drag your kid in there and probably shouldn't scedule any other tests for same time.

 

We needed:

Order from Dr C.

Order from a California Doctor

to arrive before 11:00 Monday-Thursday (not done on Friday - no one to accept the blood)

Check if other bloodwork to be done at same time excedes limit for child's weight.

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Wow -- I never heard of a weight limit for a blood draw.

 

In point of fact, at one point my son had a ton of blood drawn (tubes and tubes and tubes) and he weighed around 67 pounds. BUT, I noticed an immediate and total reduction in tics right after the blood draw that lasted for a week or two. I thought (and continue to think) that the blood draw might have been responsible -- maybe by lowering the total antibody load?

 

Anyone have any thoughts on this?

 

-- lfran

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Wow -- I never heard of a weight limit for a blood draw.

 

In point of fact, at one point my son had a ton of blood drawn (tubes and tubes and tubes) and he weighed around 67 pounds. BUT, I noticed an immediate and total reduction in tics right after the blood draw that lasted for a week or two. I thought (and continue to think) that the blood draw might have been responsible -- maybe by lowering the total antibody load?

 

Anyone have any thoughts on this?

 

-- lfran

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That's scary! I was just starting to seriously look into this. My DS is 6 and very tiny (never made it to a growth chart yet) He only weighs about 45 pounds :( I'll have to look into that aspect further. Thank you for posting! Sorry you had such a difficult time of it.

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My DS6 is also under 45 pounds (small, but I wouldn't say very tiny) and they took several tubes of blood from him last week with no concern. He handled it just fine.

 

-- lfran

That's scary! I was just starting to seriously look into this. My DS is 6 and very tiny (never made it to a growth chart yet) He only weighs about 45 pounds :( I'll have to look into that aspect further. Thank you for posting! Sorry you had such a difficult time of it.
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IFRAN - there are some conditions (at least one that I know about) where they draw your blood as a treatment. If you are sure he had a great reaction to the blood draw you might want to look into this. Excess copper is one, and I had some symptom personally that I was looking into years ago but turned out to be another autoimmune thing I had going on. You might want google it. Here is one quick site I found:http://www.consumerhealth.org/articles/display.cfm?ID=19990303204921

Sysmptoms for excess copper are basically same as pandas...except doesn't say that if follows wax and wane pattern. I don't know if possible with kids, but I'd imagaine it is since they are very sensitive to ireon and excess iron leads to excess copper, and a zinc deficiency can lead to those conditions as well.

 

I'm pretty sure they would have taken all the blood if I hadn't been making them check the kit and all the tests that my imunologist had ordered. I know when we did our origianl tests (before diagnosis, and at another lab) they did full allergy panel and TONS of other tests, about 12 vials if I rememebr correctly. this was only going to be 2 larger tubes 10cc each and two smaller standard tubes.

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I thought the big deal in doing the CamKinase tests would be deciding when to do it. Wait for exacerbations or in remission. Little did I know the lab(s) were going ot give me such a hard time. I originally was going to do it at Stanford - Lucile Pacard Childrens Medical center becasue I had a lab order form from my immunologist to do some other tests and he likes their lab. Since WE don't like blood draws, figured all at one time better. I called ahead and they told me they would not process a kit to be sent out. Maybe there was a little communication problem, I'm SURE they do this, the woman just could not articulate what she needed in order to make it happen. Since Standford is 40 minutes away, and you have to register you child across the street before going ot the lab, I decided to try my local lab.

 

I called them and they told me they would do what I was asking for but needed an order from a California doctor. My immunologist (after a day of leaving messages with him and talking to his nurse twice) said he would not wrtie the order. I called our phychiatrist who writes our antibiotic script. She knows the test and wrote the order, faxed to the new lab.

 

Today I took ds to lab. They saw the kit and said "oh we only do kits that need to be sent out before 11:00am." Would not let me bring to fed ex (which ironically you can see from their doorstep). They send the kit to some central place then goes to fed ex. no one told me that. i made them check the kit to make sure they had everyting they needed to do the kit next time. And no, they did not - there was no "order" from Dr Cunninghamint the kit.

 

In addition, I had the lab tech take a look at the other tests the immunoloist ordered, and besides the fact that they need clarification on one of the tests (becasue they have two with that name..the Standford lab order from he gave me is non-standard) my son didn't weigh enough to do both the immunologists test and the cunninghams test at same time. AND one of those test needs to be done before 11:00am too.

 

The good news/bad new is my son has been doing as good as he ever has been since first exacerbation just over a year ago. He has had no tics for two days..and I asked him how he slept the other day and he said, "great, I've been sleeping really well the last few days"..maybe this is the universes way of telling me not to do the cunningham test at the moment. I decided to do the test at "baseline" but this is actually better than baseline.

 

Anyway, I'm venting. Now we have to pull him out of school again and go before 11:00 TWO MORE TIMES. Son not happy.

 

Just know exactly what you need for you lab before you drag your kid in there and probably shouldn't scedule any other tests for same time.

 

We needed:

Order from Dr C.

Order from a California Doctor

to arrive before 11:00 Monday-Thursday (not done on Friday - no one to accept the blood)

Check if other bloodwork to be done at same time excedes limit for child's weight.

 

May i ask,unless i missed the part where you said it...

your son hasn't had any tics in 2 days....

do you have any idea why...

supplements...ivig...

thanks

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He has gone tic-less before. I think he has had two periods of a few weeks each (maybe even a month plus) when he had no (or almost no) tics. He still had irritability, and he still had this OCD thing -he can't STAND to hear or see me swallow anyting. Its usually just me, sometimes his dad he has this issue with, he is fine with everyone else.

 

I wish I could tell you it was a supplement or something else. The only thing that went on was he was ramping up a couple weeks ago for maybe 3 days, insomnia more frequent tics, a looking into the sun compulsion, not exacerbation, just a blip coming on and then he woke up with the stomach flu in middle of the night. By the next day he ws better, and within several after that he was doing great. This is not the normal course of a "blip" for him. Usually he'll ramp for 7-10 days, be consistent for two week more, then take 2 more weeks to settle down. And usually (this is 3 - 4 times in the past year) it was related to a upper respiratory infection.

 

Maybe the stomach virus, being more violent or just different somehow, did something to his immune system. Could also just be a couple good days - its been cloudy here and looking into the sun has been his most recent thing, so he hasn't been able to do it.

 

We are just over a year into this. On antibiotics for 7 1/2 months. No steroids yet. we tried one burst way back but he was getting a cold so had to stop on day 3. Planning steroid burst after getting cunningham test done at baseline - can't do before test. He is 11 years old. No ivig yet. I decided to do the cunningham test to find out where he is at "baseline" becasue NOT doing IVIG is actually a course of treatment as well. If the c. test come back low, great - antibiotics and his body are working. If high, I may pursue ivig, even though his baseline is tolerable.

Kids with tics tend to have higher CamKinase II levels. I just wish we had some statistics on what that means for long term mental health, and if these levels will lower with use of antibiotics alone. We will be into puberty in a year or two. I feel I need as much data as soon as possible to make this decision.

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Thanks! I will look into it.

 

What I am hoping is that an adult with PANDAS (or tourettes) or someone with an older child/teen would want to donate blood and then report on whether the blood donation decreases the symoptoms? I'm wondering...could the decrease in blood volume also decrease the level of circulating antibodies and thus depress the symptoms for a time?

 

Anyone think this is possible...or willing to donate blood and report back? ;)

 

 

IFRAN - there are some conditions (at least one that I know about) where they draw your blood as a treatment. If you are sure he had a great reaction to the blood draw you might want to look into this. Excess copper is one, and I had some symptom personally that I was looking into years ago but turned out to be another autoimmune thing I had going on. You might want google it. Here is one quick site I found:http://www.consumerhealth.org/articles/display.cfm?ID=19990303204921

Sysmptoms for excess copper are basically same as pandas...except doesn't say that if follows wax and wane pattern. I don't know if possible with kids, but I'd imagaine it is since they are very sensitive to ireon and excess iron leads to excess copper, and a zinc deficiency can lead to those conditions as well.

 

I'm pretty sure they would have taken all the blood if I hadn't been making them check the kit and all the tests that my imunologist had ordered. I know when we did our origianl tests (before diagnosis, and at another lab) they did full allergy panel and TONS of other tests, about 12 vials if I rememebr correctly. this was only going to be 2 larger tubes 10cc each and two smaller standard tubes.

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