indicators of healing

[smartyjones]

there seems to be a lot of posting lately that gets difficult for me to comprehend - cunningham results, ivig, bbb. i believe we get into this due to behavior oddities and difficulties. once we know it's pandas, does the focus change to the immune and other body system health? is behavior a reliable indicator of healing? do we know?

 

what are you using to track if healing is/is not occurring? general behavior, lack/presence of exacerbation, test results, trust in the medical procedure?

 

my son has had high aso and anti-dnase. are these out the window for indicating anything?

 

thanks!

[thereishope]

.

Edited October 18, 2016 by vickie

[Kayanne]

I haven't had a lot of tests done on my daughter either...

 

When we put her on the prednisone, I think she healed in reverse. Meaning that the newest behaviors were the first to dissappear and the earliest ones that we noticed were the last to be resolved.

 

I guess since this is considered to be inflammation in the Basal Ganglia, it makes sense that as the swelling goes down, the child's behavior "rewinds"

 

For us, I felt she was better when she was able to answer yes or no questions, and make simple decisions again because that was the first PANDAS behavior that we were aware of.

[dcmom]

I agree, my daughter's symptoms definately seemed to go away in reverse- and I felt the same about the brain swelling, and then that swelling healing.

 

I def base healing on symptoms that include behavoir, sleep, appetite, appearance. I also try to not panic, or feel great after one day- rather wait for a pattern over a few days. My daughter has had a couple of very short term (3 day) flare ups when just exposed to strep.

[smartyjones]

thanks for your thoughts. do you have any tips about journal keeping? i seem to be full-force for a while and then fade in vigilance about keeping track. 2 weeks ago, he "needed" a sticker atlas in Sam's club and carried around a piece of paper from the floor to throw away at home - we did find a trash can there that was okay, very unusual for him to notice trash. A few days later, he had a runny nose. Now, those behaviors don't seem to be with us. But I question if he's level and it's my awareness and tracking that fluctuates or if it's his behavior that fluctuates.

[T_Mom]

Smartyjones, this is an interesting question you raise:

" ...is behavior a reliable indicator of healing?"

 

All I can add is that I hope so!

 

We treat and observe as parents the best we can--what else can anyone do.

 

The: http://www.pandasnetwork.org website does a great job of summing up what we know, and don't know at this point--

[EAMom]

Interesting insights about "rewinding"!

 

We still don't know if a child's CAM kinase ll goes down with IVIG etc. I would try to focus on the child's behavior and not the numbers.

 

For our dd , ASO/anti-dnase b was never a reliable indicator of anything, even when she was culture positive. Also, be aware that viruses /other illnesses http://www.latitudes.org/forums/index.php?showtopic=5266 can trigger exacerbations...so you could have worsened behavior in the absence of strep and esp. strep titers (if your child gets elevated ASO/anti-danse b with strep.)

[thereishope]

.

Edited October 18, 2016 by vickie

[dcmom]

As far as journaling goes, I keep one as well. It is not daily, and very informal. It is on the computer, and typically I sit down and write when things change. It is mostly week by week, but there are times when I summarize a month. I gave it to some doctors in the beginning- I don't think they read it, but it helped me keep the facts and general timelines straight when they would ask questions.