Blood work results

[Debbie1]

My doctor called today with results from the blood work my son had done. His antiDNAse (not sure how to spell correctly) was, as my doctor put it, "sky high". ASLO was elevated too. Here are the numbers:

 

AntiDNAse was 2700 (normal is under 200)

ASLO was 600 (normal is under 200)

 

My pediatrician said he has never seen AntiDNAse so high. He put a call in to the neurologist and requested a call back today. Either he or my neurologist are supposed to call me back to discuss further.

 

His recent throat cultures have all been negative, but another one of my children had strep last week.

 

Where do we go from here???

If it is PANDAS why would dietary changes have helped at all?

 

Debbie

[P_Mom]

Debbie,

It seems like you are well on your way to answers....PLEASE contact dr.K at

 

http://www.webpediatrics.com He can help you tremendously from here...you have all the info. he needs.

 

Kelly

[Debbie1]

Thanks Kelly.

 

I just read through some PANDAS info on Dr. K.'s website, but have not yet contacted him.

 

As of late Friday, my ped. spoke to the neuro and then called me. The neuro was "impressed" with his antibody levels. They called this a "possible PANDAS case" and decided to put my son on a round of amoxicillin. My neuro has a protocol to treat PANDAS and this is step one. I was told that if this doesn't work, step two is antibiotic treatment over an extended period. Not sure what steps are taken after that, but at some point down the line, IVIG is considered as an option.

 

Does this sound reasonable?

 

Can anyone help me understand a few things:

 

I still do not understand why dietary changes appear to have helped him if this is PANDAS related??

 

He started the antibiotics yesterday evening. How long would it take to see a change in tics/behavior if the antibiotics are working?

 

What is the likelihood that my daughter's tics are caused by the same thing?

 

I am really confused as to why neither my ped or neuro brought PANDAS up as a possibility previously and why they have not recommended testing for it if only to rule it out.

 

Thanks,

Debbie

[Pudgeo]

Thanks Kelly.

 

I just read through some PANDAS info on Dr. K.'s website, but have not yet contacted him.

 

As of late Friday, my ped. spoke to the neuro and then called me. The neuro was "impressed" with his antibody levels. They called this a "possible PANDAS case" and decided to put my son on a round of amoxicillin. My neuro has a protocol to treat PANDAS and this is step one. I was told that if this doesn't work, step two is antibiotic treatment over an extended period. Not sure what steps are taken after that, but at some point down the line, IVIG is considered as an option.

 

Does this sound reasonable?

 

Can anyone help me understand a few things:

 

I still do not understand why dietary changes appear to have helped him if this is PANDAS related??

 

He started the antibiotics yesterday evening. How long would it take to see a change in tics/behavior if the antibiotics are working?

 

What is the likelihood that my daughter's tics are caused by the same thing?

 

I am really confused as to why neither my ped or neuro brought PANDAS up as a possibility previously and why they have not recommended testing for it if only to rule it out.

 

Thanks,

Debbie

DIet changes may have helped if there are foods he eats that he has some sensitivities to...remember the immune system is really confused right now...

I've heard that some people see results from the antibiotics with in a week...or a few days? everyone is different..

Traditional Dr don't really know how to test for PANDAS....I'm very impressed your Dr knows so much! Don't loose him! When I told my sons pedi last year that I thought I was PANDAS I was totally brushed off and now he's doing IVIG for me....Sarah

[EAMom]

Debbie,

 

Amoxicillin didn't help our PANDAS daughter at all (x 3mo.). Dr. K. also feels that Amoxicllin is useless against PANDAS (he likes augmentin). My dd is doing great on Azithromycin (the 4th antibiotic we tried). Even with the Azthromycin, it wasn't an overnight change. Mood improved after 3 days, OCD/anorexia nervosa took 10 days, tics took 6 weeks (the tics were a minor issue to us).

 

The azithromycin is anti-inflammatory, immunomodulatory, and gets intracellular strep...maybe that's why it works.

 

Not everybody does better on Azithromycin. Another possiblity are cephalosporins (which didn't help my dd, but has worked for others).

 

Some kids don't improve on antibiotics, then IVIG should be considered. Dr. K has done the most IVIG on PANDAS kids and has a great success rate.

 

Has your dd had a throat culture?...I think it is possible (as a sibling) she is PANDAS as well...but not necessarily. If she is PANDAS, perhaps if you are vigalant about treating strep infecitons her PANDAS will never amount to much.

[EAMom]

re amoxicillin...it could be that amoxicillin works for some, just not the more severe/refractory cases of PANDAS (like my dd or the type of kids that are likely to go to Dr. K.)...

[ad_ccl]

My son did much better off certain foods - as PANDAS is an auto-immune disorder the goal is to keep any attacks on the immune system at a minimum - we did blood work and found he was sensitive to dairy and gluten - so by removing them his immune system was not being bothered by that too. I always go back to the bucket theory - with your immune system being a bucket - strep can fill the bucket up - so the goal is to keep the bucket as empty as possible - by removing anything else (prior to PANDAS by son ate all the foods with no issues - so I was shocked when he showed he was sensitive and even more shocked at how much better he was once we removed the foods).

[EAMom]

I like the "bucket theory"...I have heard it used for allergies (pollen, pet, etc.) but agree that it could apply to PANDAS as well.

[Caryn]

Yes, we are not PANDAS, but I believe the bucket theory applies for us as well.

I recently made a post about Hypochlorhydria (low HCL in the stomach) and I am wondering if there might be something to it. I would love to know anyone's thoughts on that, especially anyone that has a known case of PANDAS and has a child who gets frequent infections.

We used to get frequent viral and bacterial infections before the diet changes. I am wondering if low HCL is the crux of my son's problem. I am thinking about getting him tested for it but am undecided.

This is the original thread: http://www.latitudes.org/forums/index.php?showtopic=3836

[KaraM]

Debbie,

 

Have you seen the FAQ on the Helpful Threads at the top of the forum? That has some very helpful info.

 

Another thought is to try a steroid burst (although I'm not sure how that works with Tics...someone else chime in).

From what I understand, Dr. K. routinely uses steroid burst as a diganostic tool.

 

Kara

 

Thanks Kelly.

 

I just read through some PANDAS info on Dr. K.'s website, but have not yet contacted him.

 

As of late Friday, my ped. spoke to the neuro and then called me. The neuro was "impressed" with his antibody levels. They called this a "possible PANDAS case" and decided to put my son on a round of amoxicillin. My neuro has a protocol to treat PANDAS and this is step one. I was told that if this doesn't work, step two is antibiotic treatment over an extended period. Not sure what steps are taken after that, but at some point down the line, IVIG is considered as an option.

 

Does this sound reasonable?

 

Can anyone help me understand a few things:

 

I still do not understand why dietary changes appear to have helped him if this is PANDAS related??

 

He started the antibiotics yesterday evening. How long would it take to see a change in tics/behavior if the antibiotics are working?

 

What is the likelihood that my daughter's tics are caused by the same thing?

 

I am really confused as to why neither my ped or neuro brought PANDAS up as a possibility previously and why they have not recommended testing for it if only to rule it out.

 

Thanks,

Debbie