Spoke with Dr. C today!

[saidie10]

I got the blessed opportunity to visit on the phone with Dr. C today. I sent her an email about my youngest sons elevated CamK and what we should do if anything for him, and I also wanted to ask her about my oldest son being put on penicillin post IVIG 2 weeks ago. She did respond via email and told me when she would be in her office and said she would try and call me. We played some phone tag but finally caught up with each other. She is so nice and so appreciate of the parent support she is getting and all the donations!!

 

We discussed our Immunologist putting DS7 on penicillin post IVIG and she said as long as he does well then that should be fine. We would simply need to address issues as they come up (i.e. change abx if necessary). She even mentioned talking to our Immunologist and that she is indeed coming to San Antonio in February (soonest she could get there) to help his team with the PANDAS protocol they are working on!

 

As for my younger son, she said that his high CamK did indicate activation of neuronal cells. Since he is still responding to immediate abx treatment (PANDAS symptoms improve with 10 day course) then his immune system is still functioning properly. She said it is likely that his CamK was well into the 200's during his strep exacerbation in May, but because he was not in exacerbation when the test was done, it is very likely that his Anti-Neuronal titers had already fallen to normal ranges and that his CamK was falling, yet still obviously very elevated. She concurred with all the doctors we have spoken with that for DS5, we must wait and see and treat promptly with abx and then follow up as necessary.

 

This made me feel significantly better about what we are doing for both of them.

 

She said my oldest sons presentation was pretty classic PANDAS and she asked me to send all their other labwork (urinalysis and blood) to her so she could have in their files. She said they really need this stuff as they are trying to put all the pieces together. I am sure she would like more parents to follow up with what is happening with their kids as it could only help what they are trying to figure out, right? She did confirm what some other Mom's have said, that the elevated AntiD2 is what they see in kids with more movements than OCD. When I told her about DS7's elevated Neurotransmitters (in particular Dopamine) she was adamant I send her the results. Like I said...they are trying to figure it all out so any information they can get is helpful for their study!

 

Lots of information I know, but just wanted to share as I was pretty excited to talk with her!

[texascatholic]

I spoke with her once by telephone and found her to be very gracious and down to earth. So glad she is coming to San Antonio!

[lfran]

Thanks for sharing! DS9 is also mainly tics (OCD issues so subtle that I wouldn't notice if I weren't on high alert) and his anti-neuronals were all high normal, except for D2 which was 32,000!

 

What is the name/where do you get the neurotransmitter test that you mention?

 

Thanks!

 

 

 

 

I got the blessed opportunity to visit on the phone with Dr. C today. I sent her an email about my youngest sons elevated CamK and what we should do if anything for him, and I also wanted to ask her about my oldest son being put on penicillin post IVIG 2 weeks ago. She did respond via email and told me when she would be in her office and said she would try and call me. We played some phone tag but finally caught up with each other. She is so nice and so appreciate of the parent support she is getting and all the donations!!

 

We discussed our Immunologist putting DS7 on penicillin post IVIG and she said as long as he does well then that should be fine. We would simply need to address issues as they come up (i.e. change abx if necessary). She even mentioned talking to our Immunologist and that she is indeed coming to San Antonio in February (soonest she could get there) to help his team with the PANDAS protocol they are working on!

 

As for my younger son, she said that his high CamK did indicate activation of neuronal cells. Since he is still responding to immediate abx treatment (PANDAS symptoms improve with 10 day course) then his immune system is still functioning properly. She said it is likely that his CamK was well into the 200's during his strep exacerbation in May, but because he was not in exacerbation when the test was done, it is very likely that his Anti-Neuronal titers had already fallen to normal ranges and that his CamK was falling, yet still obviously very elevated. She concurred with all the doctors we have spoken with that for DS5, we must wait and see and treat promptly with abx and then follow up as necessary.

 

This made me feel significantly better about what we are doing for both of them.

 

She said my oldest sons presentation was pretty classic PANDAS and she asked me to send all their other labwork (urinalysis and blood) to her so she could have in their files. She said they really need this stuff as they are trying to put all the pieces together. I am sure she would like more parents to follow up with what is happening with their kids as it could only help what they are trying to figure out, right? She did confirm what some other Mom's have said, that the elevated AntiD2 is what they see in kids with more movements than OCD. When I told her about DS7's elevated Neurotransmitters (in particular Dopamine) she was adamant I send her the results. Like I said...they are trying to figure it all out so any information they can get is helpful for their study!

 

Lots of information I know, but just wanted to share as I was pretty excited to talk with her!