Non-PANDAS DD2 has coxsackie... again!

[lsad765]

Hi all -- As always, I would appreciate any input from those of you with similar experiences.

 

My non-PANDAS DD2 (I think -- probably too young to tell) has never had strep but has had Coxsackie 3 times this winter! She is sick again now. Had fever, red dots in the roof of her mouth, stomachache (from what I could gather from her), and crabbiness. My DD6 with PANDAS. who has been making great gains in the last 2 weeks on Azith and with ERP, has been struggling more since DD2 got Coxsackie. My DD6, per Dr. T, is actually on Acyclovir right now, because of high Coxsackie titers herself. She is near the end of the 10-day course.

 

Questions:

 

1. Our ped doesn't do anything for the Coxsackie. Do you think an anti-viral would help my DD2?

 

2. Is there alternative remedy for DD2 to alleviate symptoms and/or fight the Coxsackie right now?

 

3. Is there alternative remedy to prevent Coxsackie in DD2 in the future? I want to prevent it not only for her sake but also for the sake of DD6.

 

Thanks in advance, as always --

[sf_mom]

We have been dealing with high Coxsackie titers (several strains) in all three children for the last 2 1/2 years (probably had Coxsackies their entire lives). Our children also have other viruses, chronic bacteria's (Lyme et al), vitamin/mineral deficiencies, heavy metals issue, etc.

 

We have used an ongoing rotation of herbal remedies for the last 2 1/2 years and almost all viral titers are sub-negative except one strain of Coxsackies that is only slightly positive currently. This is just some of the herbal anti-viral's we have used over the years: Olive Leaf Extract, Virographis, Engystol, Andrographis, MSM, A-C by Bryon White (specifically formulated for Coxsackies), etc.

 

In our experience the viral titers were persistent and would have never resolved with 10 course of anti-virals, we had no physical signs of Coxsackies until we treated aggressively, we did notice a herxheimer with the introduction of each new anti-viral protocol.

 

To specifically answer your questions. I do think an ongoing herbal anti-viral rotation would help alleviate symptoms and bring down titers year over year in both children. I have concerns that there are other chronic issues dragging on your children's immune system keeping their titers high and outbreaks resurfacing. I also think its very possible that the repeat outbreaks are the same initial virus and not new exposures.

 

Like others we have a team of Dr.'s that have helped with our children's recovery. Both our LLMD and Pediatrician that specializes in treating Autism biomedically have helped investigate 'all' the issues at hand and are very versed in treating chronic viruses. I would recommend finding someone to help guide protocol's long term. I am not convinced Dr. T has that experience with length of treatment and herbal rotations.

[lsad765]

SF Mom --

 

Thank you very much for this.

 

My PANDAS DD6 has high Coxsackie titers, but I don't believe they are very high -- Dr. T's report showed that two of the Coxsackie A's were 1:800 and two were 1:400. She tested negative for everything else (Lyme, etc...).

 

I think am going to take both girls plus DD6's twin sister, who has very mild OCD symptoms (just one small one, really), to a holistic doctor recommended by a neighbor. My understanding is that one of his biggest recommendations is a gluten free diet. Have you or anyone else tried this with success?

 

Right now, it seems that the at-home ERP that I have been doing with my daughter is the number one thing that is helping her right now (probably aided by Azith). I have been very intensive about it, and her symptoms were relatively mild to begin with, which I'm sure makes it easier to deal with with ERP.

 

I've been guided in this by Dr. Storch at USF and the advice of a couple of other therapists, as well as some very savvy mothers from this very board! I am stunned at how well it has been working. Given this, I think this will be the main focus of my treatment protocol for my PANDAS daughter for the time being, though I appreciate that if I can get her and her sisters' other immune problems under control, that can only help. It is definitely weird that DD2 has had Coxsackie 3 times this winter, and I want to figure out what is going on with her regardless.

 

Thanks again --

[sf_mom]

We are a dairy free family and mostly gluten free. We did test for food allergies and one child was off the charts responsive for dairy, caseins and eggs. The other two, also twins had similar allergies but not as severe as their older brother. As far as we can tell they are not gluten intolerant but because they have such overwhelming immune issues we try to lower impact by being mostly gluten free (we make mistakes). I have chronic Lyme, yeast, gut issues (low digestive enzymes) and high gluclose levels, so I am attempting the Paleo Diet per our LLMD. It's been rough start because I love pasta, rice and bread but I am hopeful I will eventually get used to the diet changes and have less and less cravings. The Paleo Diet is a work in progress.

 

I believe Dr. T tests for Lyme via the Elisa which has a high rate of false negatives and not even sure if he tests for all or any co-infections. I wouldn't completely shut the door on Lyme being a possibility unless you've properly investigated with a speciality lab like Igenex, Stonybrook, Advanced Labs or similar. Just something to keep in the back of your mind if you continue to have difficulties in the future.

 

1:800 is actually a very high titer for Coxsackies... essentially 8 times the norm. Our older son at one point had similar high titers and is now in the 200's for the last remaining positive strain and we are still treating. Viruses bind to heavy metals (check - we have lead, copper and potentially mercury issue), they can also be very chronic... go intercellular and bind to chronic intercellular bacterias (check - we have intercellular bacterial issues and not all tick related bacterias). At least, you have a baseline of titers and can now track them year over year while continuing to attempt to lower titers with treatments. If they remain stubbornly high at 800 a year from now and continue to climb definitely investigate further. In both the Autism world and Lyme world chronic viruses can be a road block for full recovery.

 

I am glad you've have made progress with ERP and hope you continue to see advances from biomedical side.

Edited March 5, 2013 by SF Mom

[lsad765]

Thank you so much for this response. There is definitely a learning curve with all of this! I can't say enough how helpful the expertise of those like you have informed the little I have learned so far.

 

I just ran out and got some Olive Leaf Extract as a start. Do you by any chance know how to figure out the dosage? My girls are about 36 lbs, 40 lbs, and 20 lbs.

 

Thanks again --

[sf_mom]

Go low and slow. I would start with 250 m.g. for each child. You might have to break open capsule and mix with juice. Every couple of weeks increase by 250 m.g. until you reach 1,000 m.g. for older DDs. For younger DD stop at 500 m.g. EXPECT a viral outbreak of sores or bumps (for us typically around 3 to 6 weeks after starting) or worsening of existing symptoms even OCD. All should eventually settle. I would use Olive Leaf Extract for 3 to 6 months and then consider a rotation of another anti-viral.

 

Now the you've given your girls weight and ages.... I am not sure of their exact percentages for weight but obviously they are on the lower side of the curve. For our younger DD who was also in the 7% for weight and 70% for height we did comprehensive stool analysis and found she had no ability to absorb what she was eating (no digestive enzymes). She is now 50 pounds and turning 6 in May. There is a great book called Enzymes for Autism and Other Neurological Disorders (OCD, anxiety, AD/HD, etc) even prior to pursuing an elimination diet for potential food allergies. I highly recommend the book as your next step and as it might help explain how all the issues are interconnected.

Edited March 5, 2013 by SF Mom

[lsad765]

Thanks for this!