CAM Kinase score...just above normal

[T_Mom]

No she never brought up IVIG after the steroids. My son got really agitated on the steroids. Did that happen to anyone else. But before the steroids he was already being very difficult mood wise. During that trip to DC he was so terrible. He hrew his shoes in the Memorial fountain and screamed and refused to walk and had to be carried aroung DC. He was having licking and smelling tics and tantrums. However during and after the steroids he got even more angry. Throwing things and kicking things. I could follow up with her and request she try the IVIG. She really wanted him in the study for Dr. Grant to really check him over and get to the bottom of the anxiety. However all our PANDAS kids have anxiety so I am not sure why Andrew's was different? Has anyone here done the OCD study with Dr. Grant?

Michele,

Hi, my sons Cam Kinase score was 137. I had a phone consult with Dr.L and she said that she would like my son to try the months steroids first and if we still weren't seeing the results that we want to see, then we can consider IVIG or PEX? Dr.L said sometimes if a child has had Pandas for awhile steroids may not be enough and that's when you should consider trying IVIG or PEX? Did she not give you that suggestion?

I am guessing - but maybe because of the lack of response to the Prednisone? We saw (as an example) a dramatic decrease in OCD and anxiety on Pred. I really don't know if this test is definitive or not - but I usually hear about this as a part of the clinical picture. Maybe also due to the fact that Pred increased the anxiety for your son (which would be a more normal response). If a child has an increase of anxiety related behavior on Prednisone, then perhaps that starts to build a different picture.

 

Maybe start a new thread that asks about "did your child's symptoms reduce on Prednisone" and see if anyone has a firm PANDAS diagnosis, and also a bad response to Pred instead of a positive one? Good luck with all this - it sounds like a real puzzle.

 

I would also call NIMH & ask if you can speak to Dr. Grant - I have heard from others that he is pretty accessible.

 

 

I agree--the NIH route would most likely give your child a thorough review of just about everything and Dr Grant is very familiar with PANDAS research, worked with Swedo, etc. You may have contact with Swedo as well once you were "in".

 

If the study was suggested and you have a doctor willing to recommend to get you in it may be a real help. There would no doubt be a team available, etc. NIH is for extreme cases that need help--because of the expertise it offers--and free right?

[michele]

Here is the issue. 11 visits in 9 months. We are in OH. Only two can travel and I have 3 other kids, one is home with me daily because she is 2. We can't change his meds in 9 weeks which has not been the case recently. He needs them adjusted again and we can't start NIMH until Dec. now because of the last change. I guess I could just wait and not adjust them again (We see the psych again Mon. )but his anxiety is way up. Butt picking, moving constantly, toileting often, really hyper and loud, smelling and licking, up on his curled toes, wanting to shower often with all the light on, cussing and getting angry easily. I am so torn. Plus I have to get the local psych to agree to it in writing so she would be responsible in his distance care from NIMH. You don't know if you get the placebo for 12 weeks. So many factors. Plus how does it affect kids mentally long term to be a guinea pig? How many here would do it?

No she never brought up IVIG after the steroids. My son got really agitated on the steroids. Did that happen to anyone else. But before the steroids he was already being very difficult mood wise. During that trip to DC he was so terrible. He hrew his shoes in the Memorial fountain and screamed and refused to walk and had to be carried aroung DC. He was having licking and smelling tics and tantrums. However during and after the steroids he got even more angry. Throwing things and kicking things. I could follow up with her and request she try the IVIG. She really wanted him in the study for Dr. Grant to really check him over and get to the bottom of the anxiety. However all our PANDAS kids have anxiety so I am not sure why Andrew's was different? Has anyone here done the OCD study with Dr. Grant?

Michele,

Hi, my sons Cam Kinase score was 137. I had a phone consult with Dr.L and she said that she would like my son to try the months steroids first and if we still weren't seeing the results that we want to see, then we can consider IVIG or PEX? Dr.L said sometimes if a child has had Pandas for awhile steroids may not be enough and that's when you should consider trying IVIG or PEX? Did she not give you that suggestion?

I am guessing - but maybe because of the lack of response to the Prednisone? We saw (as an example) a dramatic decrease in OCD and anxiety on Pred. I really don't know if this test is definitive or not - but I usually hear about this as a part of the clinical picture. Maybe also due to the fact that Pred increased the anxiety for your son (which would be a more normal response). If a child has an increase of anxiety related behavior on Prednisone, then perhaps that starts to build a different picture.

 

Maybe start a new thread that asks about "did your child's symptoms reduce on Prednisone" and see if anyone has a firm PANDAS diagnosis, and also a bad response to Pred instead of a positive one? Good luck with all this - it sounds like a real puzzle.

 

I would also call NIMH & ask if you can speak to Dr. Grant - I have heard from others that he is pretty accessible.

 

 

I agree--the NIH route would most likely give your child a thorough review of just about everything and Dr Grant is very familiar with PANDAS research, worked with Swedo, etc. You may have contact with Swedo as well once you were "in".

 

If the study was suggested and you have a doctor willing to recommend to get you in it may be a real help. There would no doubt be a team available, etc. NIH is for extreme cases that need help--because of the expertise it offers--and free right?