Myco P + kids

[JAG10]

Fixit,

 

My dd is also 10 and has been on the Biaxin XL 7 days, 500mg. She is definitely improving, i'd say 3 steps forward, one step back fashion. She has remarked about feeling pressure in her eyes too and I've noticed her rubbing them.

 

I'm just making an informed estimate at this time, but I think my dd started with strep from recurring ear infections very young, toddlerhood. Looking back, I believe the myco-p may have piled-on winter 07 (long, persistent cough at that time) with a marked downturn in behaviors and function the second week of 3/07. As far as the lyme 41 band, I have no idea- only pulled one tick off her ever, sent it (the offending tick) to that Igenex lab at the time and tick was negative for lyme. Perhaps it will be prudent to further investigate the lyme aspect, but her symptoms are all neuro. Back to the myco-p; in first grade, this same winter 07 timeframe, dd would comment about seeing black spots and I've read other parents post similar remarks about this symptom. My dd says she remembers seeing those black spots, but doesn't anymore. At this time, she also started having great difficult tracking in reading. Could read lists of words no problem, but great difficulty with horizontal tracking. She does feeling the pressure/pain at times. I think there is some ocular connection w/myco-p.

 

We have only been pursuing abx since the beginning of Feb. First, zith with some positive changes, then biaxin xl with the discovery by labs of further offending infections. Prior to recently, it was all psych meds the previous 4 years which never yielded consistent, positive results. Often her response would start out positive much quicker than expected, and then fade back to chaos. This isn't scientific, but I think it was her body's way of telling us- NO, this still isn't right, keep looking!

 

And so goes the saga so many of us have experienced; Taking our children with pyschiatric symptoms to doctors complaining nothing is working the way it is supposed to, sounding frustrated and desperate....and how have many of these doctors responded??? Apples...trees... we must be "crazy" too, maybe just a little better at hiding it than our kids.

 

At this point, I'm not wasting much time trying to convince her previous doctors of PAND (as, m, l, ...), my daughter have already had the majority of her childhood negatively impacted by this. I'm seeking out those who are successfully working the problem. I wish to one day take my healthy dd back to her previous docs in hopes to help open their eyes for future patients.

[momaine]

I answered yes to having had symptoms before being tested, but wanted to clarify that that is only looking back 3.5 years that I can remember those symptoms. Nothing recent.

[Bat_Sheva_Myllys]

Sandra had Myco-P way back in 2005, just before the whoe thing started.

Got Clarithromecyn and was almost cleared of symptoms. Then Prednisone for a week and thereafter was well for a whole year.

Got sick again in 2006, tried Clarithromecyn and short course of Prednisone to no avail, long term Prednisone with tapering, to no avail.

Got IVIG in Spring 2007 and was immediately great. When IVIG was stopped for asmin reasons, an infection retriggered the condition.

IVIG repeat + Medrol burst IV had a good effect, again stopped for admin reasons. The condition has been real bad between Jan 2008 and Jan 2010

Since mid January 2010 on 500mg Azyth daily, and seems to be improving slowly but steadily. We are hoping for a long term IVIg to start as soon as possible (meaning once the infection spcialist we got convinced this is the way to go (he would not dare Pheresis or PEX) gets his courage to start. Complicated story of Finnish medical bureaucracy). We may be adding steroid bursts, or then not. A lot depends on who he decides to listen to, Dr T and K and a few other "foreign experts" who got the experience, or a Finnish neuro, who got no experince.

 

Sandra never tested positive to Strep, in all methods of testing, yet her Mycop-P IgG has been high all through the past 5 years ever since she had pneomonia and tested positive to it.

 

I am glad the question of Mycoplasma Pneomoniea has now come up. Until now everithing was only strep and we often felt outsiders.

[thereishope]

There are now a few more questions that some would like to know. If you don't mind answering them....

 

Here's a link to poll #2

http://www.latitudes.org/forums/index.php?showtopic=7255

[Fixit]

Fixit,

 

My dd is also 10 and has been on the Biaxin XL 7 days, 500mg. She is definitely improving, i'd say 3 steps forward, one step back fashion. She has remarked about feeling pressure in her eyes too and I've noticed her rubbing them.

 

Back to the myco-p; in first grade, this same winter 07 timeframe, dd would comment about seeing black spots and I've read other parents post similar remarks about this symptom. My dd says she remembers seeing those black spots, but doesn't anymore. At this time, she also started having great difficult tracking in reading. Could read lists of words no problem, but great difficulty with horizontal tracking. She does feeling the pressure/pain at times. I think there is some ocular connection w/myco-p.

 

At this point, I'm not wasting much time trying to convince her previous doctors of PAND (as, m, l, ...), my daughter have already had the majority of her childhood negatively impacted by this. I'm seeking out those who are successfully working the problem. I wish to one day take my healthy dd back to her previous docs in hopes to help open their eyes for future patients.

 

yes a good bit of eye tracking problems...we've had to use an overlay.(differnt colored plasitc sheets) that cut glare as regauding and when he reads outloud...his fluency is tremedously improved!!! (he may or may not have had spots...he's had so many other things that i thought were weird for a young boy...plus i've got 2 others ....i dont'remember 2 hours ago!!!