Thank goodness I have been re-educated

[Phasmid]

Just got back from appt. with son's pediatrician. He told me two weeks ago that he would like to see the CaMk score. Today he told me that it is meaningless.

[monarchcat]

Just got back from appt. with son's pediatrician. He told me two weeks ago that he would like to see the CaMk score. Today he told me that it is meaningless.

 

Give him Dr. Cunningham's phone number and have him tell her personally that it's meaningless.

 

I'm so sorry that you have to deal with this. (((hugs)))

[peglem]

If he's read the study and still doesn't know what it means, you need a new doctor! He's fine (probably) for treating aches and pains and normal childhood illness, but not interested in learning or investigating anything new. Shame on him!

[norcalmom]

What does he mean "It dosen't mean anything"?!? Time for a new doctor? Although my pediatrician is not very helpful, she is at least humble (and smart) enough to know that she doesn't know everything. She's not going to become a pandas expert, but she isn't trying to undermine my efforts to seek out those that know more than she does on the subject.

 

I can't see how anyone can read the cunningham paper comparing blood samples from known SC patients, pandas and "normal" sera and say it doen't mean anything. I mean, how do you argue with concrete numbers measuring specific reactions? Not only do you need a more supoortive pediatician...maybe a more intelligent one too? I think some people just want rules to be set for them, top down. They can't accept anything coming from a patient (bottom up) or researchers (sideways).

 

I would love to be able to invest in cunningham's test. I think it will become a basic test that kids will get in the future for diagnosing ADD, tourettes, ocd, pandas, sc...

 

Good luck with whatever you decide. I understand that you may have many years invested with thie ped, and he/she is convenient and the million other resaons to stay with him. I wouldn't have the energy to try to change someone's mind that is THAT thick headed - but good on you for trying!

[faith]

Phasmid,

I think what your doc means is that its meaningless to 'him', and we can't blame him for that. Also, we all have to remember (unless something has changed) that these numbers are still not yet with conclusion, Dr. Cunningham is still compiling data. Yes, it is said that they have seen the numbers for cam k be in a certain range for the test subjects in the past study of Swedo of kids with tics and ocd, but what they are doing right now, is seeing if there is a trend, and if this holds true for kids who are now being enrolled in this study that hve the same symptoms. I think its fair to say they don't really know what the total outcome is going to be. they may have an idea, but its not published, so I don't feel any doctor not in the know of this should be compelled to give cam k any weight. Dr. Cunningham herself, I do not believe will be able to say to any doctor that this means the child definitely is has PANDAS.

[Phasmid]

That is not what he meant. He meant that the interpretation as it relates to any neuropsych. symtoms is meaningless. He told me that CaM kinase fluctuates so would be difficult to read much into only one test.

 

 

[tapiash]

Phasmid,

I think what your doc means is that its meaningless to 'him', and we can't blame him for that. Also, we all have to remember (unless something has changed) that these numbers are still not yet with conclusion, Dr. Cunningham is still compiling data. Yes, it is said that they have seen the numbers for cam k be in a certain range for the test subjects in the past study of Swedo of kids with tics and ocd, but what they are doing right now, is seeing if there is a trend, and if this holds true for kids who are now being enrolled in this study that hve the same symptoms. I think its fair to say they don't really know what the total outcome is going to be. they may have an idea, but its not published, so I don't feel any doctor not in the know of this should be compelled to give cam k any weight. Dr. Cunningham herself, I do not believe will be able to say to any doctor that this means the child definitely is has PANDAS.

 

 

I dont care if the test is still inconclusive. We are parents with feelings, and might I add parents who have been put through ###### and back (excuse my language)The least thing the doctor could do is be or show more compassion and find a better choice of word. to describe meaningless.

[Fixit]

i am not a doctor...but i would agree that is does fluctuate....but there is also a norm

as my son's first score was 105, but that is still not normal...and it was concerning to m,e as it was just one test that may or maynot be the end all be all to my son being considered pandas......

as it wasn't crazy enough...but why wasn't it normal???

and I KNOW ..full well then, but was starting to second guess myself, upon everyone and some docs relying so heavily on that score....

i was actually scheduled to see latiemer at that point(november 09), but was concerned she would think the score wasn't high enough...(wish i had gone anyway as things had gotten worse, but would i have gotten sluffed aside)

.but doc k said it didn't matter..more concerning was his prior history, current onset and condition....

and as my son has worsened..so has his cam.....so i think it should be considered a indicator, marker, for some immune problem(could have multiple triggers)....

and with that said.....if it is above normal...which is 93ish.....that means SOMETHING is going on....and on that level should not be dismissed

So to me.....the score doesnt' matter...and i hope the docs look at other things also...but i guess we need something to get insurance to put up the $$$$$$$$$$$$$$$$$$$$$$$$$$ stinken insurance co's!!!!!!!!!!!!

[Phasmid]

Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

[peglem]

Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

 

When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

[Phasmid]

So, this is anti-dopamine antibodies, 1 and 2? Was only 1 elevated? Others elevated?

 

I understand that the CaM number is kinda nebulous. Especially when you ARE supposed to have CaM kinase in your brain normally. I get that.

 

My son's other numbers will be on the way in about a week more.

 

Thanks.

Edited June 22, 2010 by Phasmid

[lfran]

Would you mind sharing what your "very high D2" levels were?

 

My DS8 had a D2 level of 32,000, a cam K of 139 and everything else at the top of normal range.

 

Thanks.

 

 

Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

 

When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

[peglem]

Her antiD2 was 16,000- wow never heard of anyone w/ a 32,000!

 

Would you mind sharing what your "very high D2" levels were?

 

My DS8 had a D2 level of 32,000, a cam K of 139 and everything else at the top of normal range.

 

Thanks.

 

 

Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

 

When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

[lfran]

Okaaay.

 

And this was from a blood draw when he was at a very low level. Sent it in then because we were drawing for other reasons and I really wanted to see his results. (And we just saw an infectious disease specialist last week who pretty much blew us off vis a vis PANDAS).

 

He mostly presents with motor and some vocal tics. I wonder if there's a correlation.

 

Do you guys think Dr. L would be interested in these levels? Or Buster? How do we start gathering and comparing all of our data?

 

 

 

 

Her antiD2 was 16,000- wow never heard of anyone w/ a 32,000!

 

Would you mind sharing what your "very high D2" levels were?

 

My DS8 had a D2 level of 32,000, a cam K of 139 and everything else at the top of normal range.

 

Thanks.

 

 

Thanks. This was, I think, our last appointment in our six year relationship. I won't go back. I will just have to drive an hour one way (and then 5 hours one way after we move this month!) to see Dr. Lin as our pediatrician from now on? The most amusing part was, after saying this about the CaM test, I mentioned that the other titer tests will come back in a week or so (anti tubulin, lysoganglioside, D1, D2), and he said, "Send them to me. I will want to see those."

 

When we went to see Dr.L w/ a very high CamK (242), that number intrigued her, but she felt that she couldn't make treatment decisions based on that, however, she felt that the very elevated antiD2 was something that she could "hang her hat on" because it was very clear, study or not, that high antineuronal antibodies just should not be there and, so she could justify treatment based on that finding- so, I kind of see why the doc might be more interested in seeing those- as an indicator of autoimmunity.

[saidie10]

Just got back from appt. with son's pediatrician. He told me two weeks ago that he would like to see the CaMk score. Today he told me that it is meaningless.

 

Glad you are moving on but sorry you have too. It is time to find a doctor who is supportive, whether or not they have all the answers or understand or accept all the studies. Good luck!