nasty bugs!

[smartyjones]

my pandas ds, now 6, had sudden onset pandas 2 years ago. clear strep indicators. 100% remission with keflex that didn't last. we later (this past spring) discovered multilple infections, including lyme, no co-infections.

 

my "non-pandas" ds, 8, does extremely well in school, has many friends, other parents and teachers love him, plays sports, has many interests. he also has some issues that really only a pandas/pitands mom would pick up on. sometimes has inappropriately disappointed reactions; extremely poor sportsmanship(beyond normal 8 yr old); can shut down with adults; is an extremely picky eater; sweats a lot; can be indignant at times. other people seeing these would not really think is that different from a normal 8 yr old being moody or pushing limits. he tires very easily with sprints but can play a sustained game. he occasionally complains of ankle hurting or legs hurting, back hurting or legs being tired -- he also plays much sports -- street hockey, biking, football, baseball, so fairly explainable.

 

6 months prior to pandas son onset, ds8, had a few days that he couldn't walk due to knee pain. he limped or was carried at school. prior weekend, he had played first baseball game of the season and had fallen off a small porch. dr found nothing in general exam. at the time, i had a sinus infection, ds 6 complained of eye pain. 6 mths later, ds6 sudden onset pandas, with ASO 898. may be related, maybe not -- we'll never know.

 

the past few months, ds8 has had strange symptoms. won't go on a different level of the house by himself. talk of concern about baseball cards being stolen -- needs a metal safe box for them in case someone breaks in. having "bad thoughts" when falling asleep -- won't divulge much but says sometimes is trains crashing. sometimes wakes to pee although never used to even after drinking much water at bedtime. has had stomach complaints - often after eating.

 

we went to integrative MD yesterday who is treating ds6 and myself. he uses a sort of form of muscle testing. diagnosed ds with strep, (which i knew b/c he has eleveated ASO and anti-dNase ), lyme, all co-infections -- yes, babesia, bartonella, erchlicia; CMV and dengue virus (which he said there have been some outbreaks in Florida recently).

 

of course, only treatment will tell if the issues we see him will resolve. i wanted to share b/c here's a kid that on the surface looks absolutely great with only a few small issues that can easily be explained (i mean before definite troublesome symtptoms of last couple of months -- although those could be explained as well with just normal transition of almost 9 year old realizing things to be afraid of) yet, he's carrying a lot of infections.

 

i do believe that there are many viruses/bacteria that reside in our systems that may/may not be the culprits. perhaps it's only one or two that cause the symptoms that we see. i think often someone may be affected by a virus/bacteria that is only generally thought to be a problem in the extreme - such as dengue virus or west nile virus - but have it as a low grade infection that doesn't cause the extreme sickness associated with that agent, but they are still affected nonethelss.

 

i'm becoming more and more convinced that many problems we see exhibited in kids are very possibly due to infections.

Edited December 30, 2010 by smartyjones

[sf_mom]

i'm becoming more and more convinced that many problems we see exhibited in kids are very possibly due to infections.

 

Well I won't disagree with you on this issue...... I feel the same.

 

The good news is your older son probably has a healthy immune system 'now' and why he has only had low level symptoms. There is a family in NJ and the mother doesn't post/read the forum that has unraveled similar for her family. The non-pandas child had low-level set of issues and infections of Lyme/Babesia and I believe Bartonella (confirmed with blood tests) and within 16 weeks of treatment he doing very, very well. All low level issues have resolved for the older son while his PANDAS sister is still struggling but much, much better. Upon initial treatment things were rough for about 8 weeks due to herxing and now no issues. It will be interesting to see how long treatment persists for the older son.

 

I look forward to hearing how quickly things resolve for your older son. Do you plan to do blood work or are you satisfied with ART results? Many have had great success with ART alone.

 

Congratulations on unraveling this for your family.

 

-Wendy

Edited December 30, 2010 by SF Mom

[cobbiemommy]

Congratulations on getting diagnosis for both of your sons. I agree with you that there are a lot of infections that are keeping our little ones from reaching their full potential. My son also appeared very normal, but had exaggerated emotional responses to many things. Right now, he still does but it is getting better with treatment.

 

Here's hoping both your boys enjoy very happy new years!

 

Cobbie

[smartyjones]

Do you plan to do blood work or are you satisfied with ART results? Many have had great success with ART alone.

-Wendy

 

 

yes -- walking the line btwn alternative and traditional medicine can be tricky. i am satisfied with the ART results and plan to treat according to suggestions of integrative MD. however, i am curious what blood tests would show and what the options would be based on them in a traditional sense. a couple of years ago, a dr told me she only runs tests if it will influence how she treats. i think this is good advice. however, i'm not so much using it to guide treatment as to discover options-- so i'm aware of the possible paths to make good choices.

 

i wasn't going to pursue it too much -- no ignenex due to $ -- but did ask my ped to order tests. i am not using him for pandas treatment for younger son but do have him involved on the "team" b/c although he doesn't really know how to treat, he is open-minded and gives a certain perspective. unfortunately, he is semi-retired and i really do need to speak directly with him instead of others in the practice. so, while it had been 12 days and a few nudging calls, it was really only was a few days in his sense to get back to me. he's ordering a lab corp western blot and co-infections so we'll see what that shows.