Re-visiting for the next step

[3boysmom]

Hello Friends,

There is no time or energy to revisit our 4 year history on all the things we have done up to this point.

We do know that we have moved from plain ol' PANDAS to PANS for the last year.

Our DS14 is doing very well compared to the overnight dysfunction 4 years ago.

I was thinking about ordering 23 and me as our next step.

DS14 still has OCD, ADD, and also added vocal tics last year with the lovely Coxsackie Virus.

His OCD and ADD used to be a 10 on a scale of 1-10, but seems to be manageable at a 2 or 3.

So, life is manageable for him and no longer torturous.

The tics seem to be getting worse.

Here are a few things that stand out:

 

 

He is never cold and sweats as if he has just climbed out of a pool (NOT exaggerating)

 

Excessive sweat

 

Excessive heat

 

Excessive ear wax

 

Excessive bowl movements (3-4 times a day, but not diarea)

 

His vocal tics seem to be worse during a full moon.

 

 

He has been tested 3 times for Lyme and yes, with Igenex.

He was bitten by a tick 5 years ago and I still have that lingering suspicion.

But when all the tests come back negative for Lyme.....could it be a false negative from being on antibiotics?

 

 

I am suspicious of some type of parasite but he has been tested in the past.

Not sure what I should be asking the doctor to test for next.

I am going to ask about glutamate as well.

 

 

Thanks in advance,

 

Linda

[msimon3]

Have you tested for other possible tick-borne infections, such as Babesia, Bartonella, or Ehrlichia? Excessive sweating is a typical clinical presentation of Babesia.

[3boysmom]

I believe the answer is yes. I know that at least 2 of those were tested, but I will ask that the doctor to retest. Thank you, I just know that there is something that we are missing. He is on Acyclovir and Augmentin. Already treated for EBV, Mycoplasma, Candida Glabrada, H. pylori, and a few other coinfections. Began with the strep and then coxsackie. He was also tested for foliate, methylation, MTHFR mutation, Lyme, the Cuningham's test and a few other things. (also, 6 IVIGs and we a glutton free and dairy free) I am going to ask for retesting of yeast as well. Any other thoughts...I'm open.

[qannie47]

I wonder if anxiety is the reason for all this sweating. I wonder because besides dealing with Pandas, both my boys are hot. Always hot. Hot in the way that it can be below 0 and both my kids walk around with no shirts, shorts, and no blankets all year round. We keep it 67 degrees all year round. They hate the heat. At night, when I check on them, there is a film of sweat on both there bodies. One is Pandas, One is Sensory. Both are in a state of heightened anxiety for separate reasons. It is the only common denominator that I can find.

Edited February 18, 2014 by qannie47

[smartyjones]

3 boys -- my older ds, who had much more minor presentation -- would likely have flown under the radar if we didn't know what we did due to younger ds -- had excess sweating and excess ear wax. he is negative on lyme tests, although we only did quest. we see an integrative MD who believes him to have had lyme, babesia and erlichia. the sweating was not random, it was due to physical exertion, but was excessive. it has now resolved, and he sweats what I would consider normally.

the ear wax had also resolved, although recently, I did notice it again. we just recently went to doc, who believes ds is having trouble with a few viruses.'

 

he had a soft humming tic that seemed to take a long time to resolve.

 

I believe a lot of our troubles has been due to viruses. I believe a couple of years ago at a conference in TX (I did not attend personally, but remember hearing) I thought viruses were discussed as being a major contributor. we treat with homeopathy -- I am not so sure what it done in the traditional med world for viruses. I think llm has had good success with lysine.

 

I don't know -- you mention coxsackie -- perhaps that is still troublesome or there is some other virus that is bothering him -- ??

[rowingmom]

I was going to mention babesia as well. DD is actually having babesia herx reactions (chest pressure, sighing, air hunger) with cryptolepis (an herb that Buhner likes for viral infections and is used in many countries for malaria (also a protozoan infection) along with artemesia.

 

DD tested negative for babesia, but I am betting we are dealing with some type of babesia-like-organism (BLO) that is not showing up on the babesia test. DD also never really had any clinical symptoms of babesia either, most of hers were bart. We have had further improvement continuing with cryptolepis on top of the bartonella protocol herbs.

[NancyD]

My DD also tested negative for Babesia but it ultimately showed up positive with ART after 6 months of treating Bart. Since starting Babesia treatment she is herxing with sweats.