Documenting Saw-Tooth Healing Pattern

[T_Mom]

I am preaching to the choir here--but after two years of this Ps I want to stress something to new families--

 

Keep track of data. The ups and downs of Pandas ARE saw-tooth--

 

If you stand too close you may not see the true progress your child is making on antibiotics, steroids, or after IVIG, PEX, or whatever treatment is underway.

 

To get the full picture we have had to step-back and watch -- let the treatment work, it takes time.

Document objective behaviors over weekS...not days.

 

This really struck me in the Saving Sammy book as Beth literally kept track of behaviors from morning to night when working with Dr. Nicolaides (p.167)

 

TRENDS over time are what tell the story. OK, just some random thoughts this morning...

[faith]

T.mom

I think that's a good reminder that I needed to hear. I really don't do that, but I should. I guess I'm so attuned to my son's tics and behavior that I can just do it in my head. I used to keep track of alot of things when I was mostly practicing natural treatments, dietary, supplements, food avoidance, ect. , but reading back over it was really confusing, as you say it was alway sawtooth, it would be good, then be bad, then be good, I couldn't find any particular pattern and what was helping. If you have any suggestions for a format on how to track things and be able to actually make sense of it when reading back, please let us know.

 

Also, I think you are one who found really good improvemnt with antibiotics alone, correct? not sure, but thought I read that or jotted it down somewhere. (I think I gotta make a page in a notebook on everyone here, lol). Could I ask how long it took to see obvious improvement. We are on Augmentin for over 3 weeks now (500 mg 2x day, my son is 10 and about 52 lbs.) once in a while I cheat out of frustration and give 2 tsps instead of the 1 1/4 tsp. just to see. my son is still ticcing and quite alot this morning, vocals and head shakes. I did feel like things were settling more last week, but now now. Is this what you mean by sawtooth? up and down, up and down? but how does that not make one think its not helping or working? The pediatrician who origianlly gave this to us for what we thought was strep, but was negative, felt that now that we know he doesn't have strep that this is not going to do anythng. I told him I wanted to just stay on it until I saw Dr. Latimer, and he noted that, but since I said I also didn't see any real improvement, he still thought that this wasn't our problem (PANDAS), must be somehting else.

Dr. L. did give us more prescription to continue, but I am wondering I'm a lost cause? Will this eventually kick in or should it have shown something already? (we were also supposed to do the steroid, but Ihave decided to wait til after Christmas, just too much going on now and I'm nervous about how he'll react). If you want to know what Dr. L. said about that, can't tell you, because I am the latest casualty of getting no reply to phone call and e-mails since Monday....

 

thanks,

 

Faith

[dcmom]

Excellent advice Tmom- I always try (try) to look at overall trends....

 

Faith- here's another thought for you. My dd (initial episode) really didn't show any improvement until about the 30th day of zithromax. Then almost everything was gone in a few days. (and she most likely only had pandas for 6-8 weeks to start with). I know it is frustrating- but you have to give it time.

[smartyjones]

yes, yes T. mom - such good advice!

 

last winter/spring, my son was on 35 days of keflex that brought him back 100%. a few weeks off, he relapsed and again was on 30 days of keflex. i saw what i thought was only slight improvements but not near the 100%.

 

only in the fall and while reviewing notes - which unfortunately, i seem to have a saw-tooth pattern myself in keeping - did i realize that he did actually show great improvement on that 2nd course of abx.

 

separation anxiety and school phobia have been two of his biggest issues. the first abx, all behaviors resolved - back to pre-pandas self. the second, we were never able to get him back to school before it was out for summer. now, i realize this was a major reason i didn't think the abx were as effective. i was surprised when reading notes, how much improvement he actually made but just wasn't able to overcome school which i was giving all weight to. now i believe he had anxiety and phobia due to pandas which became anxiety/phobia habits that we couldn't break but the abx did actually do good work. and i only realize that due to notes.

[Megs_Mom]

I completely agree with this. We both blogged & journaled - and in the end, were able to go back & track nearly everything that was happening along with the intensity of an episode. This allowed us to find patterns that we were missing in the day to day stress of an episode. If we had missed the results of the Predenisone burst (for Poison Ivy), I shudder to think where we would be today.

[Buster]

Excellent advice Tmom- I always try (try) to look at overall trends....

 

Faith- here's another thought for you. My dd (initial episode) really didn't show any improvement until about the 30th day of zithromax. Then almost everything was gone in a few days. (and she most likely only had pandas for 6-8 weeks to start with). I know it is frustrating- but you have to give it time.

 

I can echo dcmom. We had a cliff of symptoms in June of last year when we put our dd on azithromycin. On the 10th day (after commencement) we had a break-through where she finally could vocalize that she wanted to get better and then symptoms dissipated over the next month until by mid August she was 90% back to normal.

 

In our own case, we kept a daily log and then a weekly log because outside of that time window it is impossible for us to "remember" what happened. In addition my dw would mark major events on a calendar. When we plotted the last 75 weeks, there is a noticable ramp and decline in symptoms. We plotted each symptom on a 1..10 scale (emotional lability (raging), lashing out (physical striking), measurement rituals, skipping meals, contamination fears, hallucinations, suicidal vocalization, obsessive questions, handwriting anomolies, ...) where 2-3 meant it happened but was irradic. 4-6 meant it was consistently present, 7-10 it was disabling. The contamination fears and rituals are the easiest to see as disabling -- they basically intrude to such a degree that they prevent doing anything else for the typically 1-3 hours that the symptom is present.

 

The sawtooth pattern and episodic nature was really clear when plotted against this 75 weeks. Symptoms +/- 30 points over 10 weeks -- looking in retrospect very sawtooth.

 

Regards,

 

Buster

[thereishope]

I totally agree! I kept a daily journal very early on when my son got sick because I wanted to look at it objectively. When I first had a chance to sit back and reread it, it sounded very cut and dry and rather cold. I didn't put emotion in it. I just "stated the facts". It ended up showing me patterns that I would have probably looked over. It helped me keep track of timelines for comparison. I am so happy I did that.

[NVAmom]

Excellent advice Tmom- I always try (try) to look at overall trends....

 

Faith- here's another thought for you. My dd (initial episode) really didn't show any improvement until about the 30th day of zithromax. Then almost everything was gone in a few days. (and she most likely only had pandas for 6-8 weeks to start with). I know it is frustrating- but you have to give it time.

 

I can echo dcmom. We had a cliff of symptoms in June of last year when we put our dd on azithromycin. On the 10th day (after commencement) we had a break-through where she finally could vocalize that she wanted to get better and then symptoms dissipated over the next month until by mid August she was 90% back to normal.

 

In our own case, we kept a daily log and then a weekly log because outside of that time window it is impossible for us to "remember" what happened. In addition my dw would mark major events on a calendar. When we plotted the last 75 weeks, there is a noticable ramp and decline in symptoms. We plotted each symptom on a 1..10 scale (emotional lability (raging), lashing out (physical striking), measurement rituals, skipping meals, contamination fears, hallucinations, suicidal vocalization, obsessive questions, handwriting anomolies, ...) where 2-3 meant it happened but was irradic. 4-6 meant it was consistently present, 7-10 it was disabling. The contamination fears and rituals are the easiest to see as disabling -- they basically intrude to such a degree that they prevent doing anything else for the typically 1-3 hours that the symptom is present.

 

The sawtooth pattern and episodic nature was really clear when plotted against this 75 weeks. Symptoms +/- 30 points over 10 weeks -- looking in retrospect very sawtooth.

 

Regards,

 

Buster

Tmom thank you very much! Your post was extremely timely. My son has been on Augmentin since 9/23. The dose was increased significatly 3 weeks ago (from 250mg / day to 1750 /day). We have seen significant improvements but he had an all out rage this afternoon while we were at karate. (I honestly did not know how I was going to get him home.) I start to lose sight that yes it was a difficult afternoon but this is still progress because we have only had a couple of rages this week. I love Buster's idea of plotting the symptoms on a scale of 1-10. I think a scale will make it much easier to see trends. I am so appreciative of all the posts on this site.

[fuelforall]

Yes, you are right. My son is atrocious again and I am keeping tabs. He seems to do well for two day stints, then is bad for five days. So if we can get to three and four, and continue to improve, then we know what's what.

Still it's hard to keep living with a loony.

[T_Mom]

T.mom

I think that's a good reminder that I needed to hear. ...If you have any suggestions for a format on how to track things and be able to actually make sense of it when reading back, please let us know.

 

Also, I think you are one who found really good improvemnt with antibiotics alone, correct? ...

 

Could I ask how long it took to see obvious improvement. We are on Augmentin for over 3 weeks now (500 mg 2x day, my son is 10 and about 52 lbs.) once in a while I cheat out of frustration and give 2 tsps instead of the 1 1/4 tsp. just to see. my son is still ticcing and quite alot this morning, vocals and head shakes. I did feel like things were settling more last week, but now now. Is this what you mean by sawtooth? up and down, up and down? but how does that not make one think its not helping or working? ...but I am wondering I'm a lost cause? Will this eventually kick in or should it have shown something already? (we were also supposed to do the steroid, but Ihave decided to wait til after Christmas, just too much going on now and I'm nervous about how he'll react).

 

...If you want to know what Dr. L. said about that, can't tell you, because I am the latest casualty of getting no reply to phone call and e-mails since Monday....

 

thanks,

 

Faith

 

Hi Faith and All--

Faith, to respond to a few of your thoughts-- I think the suggestion of "overall" rating that Buster and EAMom did sounds great--

Beth Maloney did a daily detailed record keeping for a few hours at a time--these could be general notes, for example something like: 9am-12pm Compulsions about germs, 5 times circling the bookcase, etc. Try to quantify the rages, count the number of tics, types and frequency (average per hour), whatever might give you clues to follow over time. --or "rate" the level of ticcing 1 - to - 10 for the day, same with OCD. My d was old enough that I also asked her to rate her sense of OCD compulsions--she was very good at this.

 

Yes, we have had good results on Amoxicillan full strength for 11 months now with my oldest (11). It took time though-- Week to week at first we could see improvements. We have also done two steroid bursts along the way.

One the Dr. K intense 5 day +taper, and the other a more lengthy treatment over 4 weeks. I will say that Dr. K had told us initially (when my d's Ps was so intense she presented as very disturbed) that the steroids would make a difference IF it was Pandas. His words were "SUDDEN AND OBVIOUS" change...I kept trying to pin him down as to what that would look like, he kept saying IF it happened we would know--there would be no question. Oh my goodness, in our case that was so incredibly true--He also said that with steroids it could take weeks to see the response. That was true with us, it was 10 days after cessation of the steroids that she "cleared" --She was not 100%, yet--but it was much, much better.

 

Don't give up yet--Sammy did not have an overnight 100% healing with the Augmentin, it was over time, clearly there but over time...

 

By "sawtooth" I mean up and down, up and down, but with treatment you will hopefully see an over all trend down in number of symptoms--though it can be a rocky road along the way--It is the long-term plodding in the right direction.

 

I remember Diana telling me last year that it was like a child's brain was on fire--and that the damage took time to heal-- I do fully believe now that with Pandas it is treatable. All the best to you--

T.