Myco ?s and younger ds

[becjonz]

We went to see Dr. B. yesterday then my sons happened to have ped. appts. today. My oldest is diagnosed PANDAS, youngest was questioned about a month ago(behavior changes in cycles, emotional lability, handwriting changes BUT NO tics or ocd)ped. diagnosed depression. We've been treating with St. John's wort at peds. recommendation. Dr. B. says could be beginning PANDAS.

Had titers done a month ago. ASO screen positive but titer only 124 (ref. range <150) Myco IgG 3.87 (ref. range <.90), IgM 193 (ref. range <770) Not getting Anti DNAse B results until tomorrow but ped. said it was positive. Now he never told me about positive tests because he said since he lives with older brother, then he should have positives. (yeah, he doesn't fully get PANDAS)

Ped. took in info on Dr.B's strategy with older ds and decided to conduct little test in re: to PANDAS- he wants me to start him on ibuprofen to see if we see any behavior changes/improvements. He figured it was a low risk test.

Does this sound like a valid strategy and what are your thoughts on labs? Do elevated labs just indicate a need to medicate so he doesn't impact older brother or put with some behavior changes would you have more worries?

 

Also had more titers done last night per Dr. B. I will be curious to see what the trend is with new tests.

[KaraM]

Hi Becjonz,

 

It was nice to put a face with a screen name yesterday. I hope your visit went well.

 

As for the validity of the ibuprofen test - we would give it to my daughter, but I can't say improvement was crystal clear. I think it might of help, but it was really tough to tell.

 

But why on earth isn't he treating the Myco? That looks pretty high?

 

What did Dr. B say about all of these results?

 

We went to see Dr. B. yesterday then my sons happened to have ped. appts. today. My oldest is diagnosed PANDAS, youngest was questioned about a month ago(behavior changes in cycles, emotional lability, handwriting changes BUT NO tics or ocd)ped. diagnosed depression. We've been treating with St. John's wort at peds. recommendation. Dr. B. says could be beginning PANDAS.

Had titers done a month ago. ASO screen positive but titer only 124 (ref. range <150) Myco IgG 3.87 (ref. range <.90), IgM 193 (ref. range <770) Not getting Anti DNAse B results until tomorrow but ped. said it was positive. Now he never told me about positive tests because he said since he lives with older brother, then he should have positives. (yeah, he doesn't fully get PANDAS)

Ped. took in info on Dr.B's strategy with older ds and decided to conduct little test in re: to PANDAS- he wants me to start him on ibuprofen to see if we see any behavior changes/improvements. He figured it was a low risk test.

Does this sound like a valid strategy and what are your thoughts on labs? Do elevated labs just indicate a need to medicate so he doesn't impact older brother or put with some behavior changes would you have more worries?

 

Also had more titers done last night per Dr. B. I will be curious to see what the trend is with new tests.

[becjonz]

Kara,

It was nice to meet you too! He isn't treating Myco because he doesn't get it. Just says same exposure to things as Matt so of course elevated! Frustrating!

As far as Dr. B well that was my fail. When it comes to Matt I get all of my own copies directly from lab of all bloodwork done. With Alex after I saw negative ASO at peds. I didn't pursue other labs figuring if anything else materialized ped. would tell me. So I didn't know about Myco results until today! Yeah, I feel studpid.

As far as myco level- Matt, PANDAS ds, his level has never been that high when he tested positive but wasn't sure in the grand scheme if that is real high.

 

Just when I think I get PANDAS, know how to maneuver I find I have sooooo much to learn!