jumping the gun w/ treatment working?

[smartyjones]

my ds9 is being treated for tic borne illness as well as strep. it's been about 2 1/2 months and we've seen mostly good improvements. about 3 weeks ago, we began to see inattentiveness. he had a dr's appt at that time and things looked good so we began a slow taper of meds, with addition of homepathic remedy to help attention. in those 3 weeks, the inattentiveness and lack of cooperation as well as general mood have gotten worse. i give fish oil b/c i think it's good but have never really seen a difference in either of my kids. a week or so ago, i doubled his fish oil. the next day, he was pleasant and cooperative but it didn't last. the next day was back to the same and continued even with increased fish oil.

 

late last week, i left message for dr. today, dr said to go back to original doses and come in in two weeks.

 

here's the rub -- today he's pleasant and cooperative. were we not giving it enough time? should i follow the original course? should i follow what dr said b/c i asked his advice? i guess if he's really on track and we increase, it only really sets us back 2 weeks and possibly some extra $ in meds.

 

thoughts? thanks.

[dcmom]

Hi Smarty-

 

Is this your pandas son? Or are you treating both for pandas now? When you say 2.5 months, does that mean you have been treating for TBI that long, or that is when you started seeing improvement.

 

This is a really hard question. It is so hard to KNOW cause and effect- coincidence is not cause.

 

We have had this type of situation several times.

 

What I can say, is try to stay calm and analytical (HA!).

 

Okay, he is a bit worse, but possibly coming off the meds can cause a slight temporary uptick in issues (we have had that with steroids), that will resolve. There could also be something else behind this uptick (loose tooth, illness exposure. I would wait another few days, as long as symptoms aren't continuing to pile on.

 

So in other words, he is having increased attention and cooperation issues. Well, if tomorrow is much worse, I would go back on the meds- if tomorrow is the same, better, or only slightly worse, I would hold off and see what the trend will be.

 

It is all so easier said than done

[Suzan]

My 8 yr old is much worse when I give her fish oils. Have you noticed the change since you added the oil? Or were you already giving that when you started tapering?

 

If the lyme treatment has been for 2.5 months, that seems early to go off the meds, unless you are wanting to treat it with naturals...

 

Susan

[smartyjones]

yes, dcmom -- i'm talking about my older son -- 2nd child affected.

 

he started in the fall with not able to be on a level of the house by himself and worry over his baseball cards if someone broke into the house. it ramped up with waking every night to pee(which he's never done even tho drinking lots of water at bedtime) and "bad thoughts" at bedtime. he's also always occasionally complained of sore ankle/knee, that also increased.

 

he's been treated for 2.5 months -- there's been gradual improvement over that time frame to now = no complaints of those above mentioned symptoms. it's morphed into the inattentiveness and non-cooperation. moodiness has been present at a low level but has currently ramped up.

 

suzan -- we're doing a homeopathic protocol with an integrative MD. much testing is based on a form of ART. we were ramping down the currently treatment but kind of in a manner of tweaking what it is rather than stopping. for ds6 it's been about a year and he has appts every 8 weeks to check and change up.

 

so i very much went back and forth -- like you take your car in and it's not making the noise for the mechanic. dh thought we should wait then i convinced him we should increase med, then i wasn't sure. so, in the end, we increased. we see dr next week so likely will change again.

 

thanks for your thoughts. i think i agree that we could have/should have been patient -- i just waffled and then went with the increase. maybe haunted by ds6's 100% remission and relapse.

 

so hard to know what the best course is. . . thanks for your help.