observation summary for dr.k

[danddd]

hi everyone,

 

i am keeping track of my observations for the 5 days prednisone and following 2 weeks. i have written about a paragraph for every day. those of you who have already done this, how much info did you sent to dr.k? is he just looking for something like:

 

day 1 tics better

ocd worse

 

or should i send the whole essay?!

i dont want to be overbearing...

 

danddd

[P_Mom]

Okay.....lol...DO NOT SEND THE WHOLE ESSAY! Keep it as simple as you can....trust me!!

[Kristy S]

I wish I could help youi. I just wanted to say thanks for posting. My consult with Dr. K is Wed. and I think I will start a diary today to help me compare what happens during our 2 weeks. Good luck, I hope you have much success!

 

Kristy

[sptcmom]

Just bullet points daily and I would use basic abbreviations. It will give him all the info he needs and save you time to talk more. I'm assuming u r having a phone consult.

[danddd]

so i will definitely keep it short, thanks for the suggestions!

i am worried, it seems dd had almost a week with some improvment(less rage and her personality came back a bit!), but now getting worse. we already had the phone consult, now just emails.

it seems that a lot of us are having or just had consults with dr.k.

it means a lot to have the advise of those who have already been there.

 

thanks

danddd

 

good luck kirsty s, the hour goes by quick, but he seems to get what your saying real fast! hope it goes well.

Edited July 25, 2010 by danddd

[T_Mom]

Danddd--Don't be discouraged yet.

 

Our d was up and down initially with steroids (via the Dr K method) and then, finally... a couple of weeks after the start of the steroids (and about 10 days after the end!) she cleared in a "sudden and obvious" manner.

 

Just like Dr K had said she would -- if it was PANDAS

[momaine]

One of the best tools I've used to help me evaluate how things are going has been to keep track of behaviors on a spread sheet. I got the idea on this forum and it works well. I list each behavior on the side then each day I assign a number to each behavior. 1-3 is there, but barely, not interfering with life too much 4-6 is prounounced, not constant, interfering with life, but not disabling 7-9 is huge impact, disabling. If you use excel, you can graph it afterwards and see the ups and downs. It's really helpful to look back on.

 

I have 13 behaviors listed. In February when I started charting it, she had been on antibiotics for 3 months and was having prednisone bursts. During prednisone, she would get a total number often in the teens or low twenties. Those were our good days. On difficult days while on antibiotics but not prednisone, she would hit 50's, 60's and 70's. If I had done it last fall without antibiotics she would have been close to 100 most days. She is now 4.5 weeks post ivig and the last two days have been more difficult than the previous week. (her period is also due) But the last two days were only in the low teens. Though the last two days have FELT difficult to me, its nice to put it into perspective because now a bad day is what used to be a really good day. When I'm feeling impatient, I need to remember that.

[T_Mom]

dandd--any news at this point?

TMom

[PANDASmcnuggetsw/fry/coke]

Yes, do keep us posted!

 

I just emailed my observation report to Dr K and am looking forward to his response. She had about 4 improved days during the observation period and then it went downhill. Ironically, now that the observation period is over (as of day before yesterday), she had a really good day today! So maybe things will improve.

 

PANDAS McNuggetsw/fry/coke

[Fixit]

i don't know if doc k changed his protocal on this but he told me origanlly up to 4 weeks...i would love to know

 

luckily because i'm not sure i saw much at first and thing may have even gotten worse as that is when the vocals came in....

but days 21, 22,23 24 were like a miracle....(note..i don't think he was on abx long enough before starting pred and i believe yeast was a huge problem between starting biazin and pred at same time and many years of multiple abx and no probitoics)