Other ABX to try...Dr. L apt tomorrow

[sf_mom]

I am so happy you found support from your LLMD for your entire family. We have had a similar experience and thankfully the worry of what type, how much, how long, which type crosses BB for antibiotics has stopped. They get it.

Edited February 11, 2011 by SF Mom

[smartyjones]

So, for now, I think most people assume that if you still have symptoms, then you still have an underlying infection.

 

i'm curious kayanne, by "people" do you mean parents or pandas doctors? or everyone involved?

thanks.

[momofgirls]

Glad you are getting the support you need worried dad. Hope its ok I used your son's story as an example its a good story and I hate to see parents get discouraged early in the game.

 

Yep, MomOfGirls, that's a nice summary of our ds's experience. The augmentin XR sure seemed to be the catalyst for our son's dramatic improvement after years of struggle.

 

And here's another plug for the LLMD's. We recently had our whole family's ASO tested again (by the family doc 5 minutes away) and found that our youngest's titer had spiked back up to 499. Naturally, we wanted to repeat the clindamycin dose that had dropped his ASO from 597 to 254 back in June. Didn't expect much resistance... but the local doc declined to prescribe abx this time. He had consulted with a local ID specialist who advised him "not to chase titers" and that "there's no medical reason to treat" without sore throat symptoms. I asked for a follow-up meeting with our family doc to beg for the abx, given that none of our family has ever shown normal strep symptoms and that this "non-standard" reaction to strep seems to be the hallmark of PANDAS vulnerability in many afflicted families. He just abdicated responsibility by saying he "couldn't go against the advice of an infectious disease expert" (who's never seen any of us as patients and was unwilling to do so) and lectured me about "evidence-based medicine." I kept my cool, but I seriously wanted to slug somebody.

 

So today we take our youngest to see the new LLMD who has just taken our PANDAS ds on as a patient. He reviews the titers, listens to our situation and prior experience with the clindamycin, shakes his head, and says "this seems like a no-brainer, doesn't it?" Without delay or hassle, he calls in a clindamycin prescription for our youngest. What a relief!!!

 

We love our new LLMD. A doctor who actually uses common sense: what a concept!

 

 

eljomom,

If you really believe your daughter just has an autoimmune disease at this point then trying another antibiotic would not make a difference for her. I guess the next step would be steroids and maybe even IVIG. I personally do not believe that you have chronic symptoms as your daughters without an underlying infection of some sort. If she does in fact have a chronic infection that you have not found, steroids may suppress the immune response for a while but will allow the bacteria to become stronger. Look back at some of the kids stories posted over the last few years on this forum. Many kids did not have immediate nor dramatic relief with a couple of months of antibiotics...especially a low dose. One boy we have all followed is a perfect example of this situation. They went the Dr. K route initially and started with antibiotics and moved on to IVIG. I think they did 3 of them but still their child struggled. They requested to try the "saving sammy dose" of augmentin and over a long period of time their child reached 95%. Father of this boy credits his sons improvement mostly to the high dose augmentin. They did have elevated strep titers and went on much later to test positive for lyme disease and a co-infection. Its just my opinion, but the high dose augmetin was killing stuff and in turn the autoimmune response greatly slowed down. That is not JUST an autoimmune disease. There are plenty of other children who are experiencing the same type of recovery pattern. It can take a long time to erradicate some of these infections especially if there is more than one type of infection. Some of us have used a combination of antibiotics and sought the help of a LLMD. I know you do not believe your daughter has lyme but a lyme doctor typically tests for everything. That is why some of us have encouraged you to go this route. Many of us parents have been at this for a while and have compared notes, our lyme doctor's are telling us that in their experience, the autoimmune response will resolve when the infections are cleared. In theory, this should be true regardless of the type of infection. We all have our theories but this makes sense to me. If it were me I would not give up on finding the source of infection in your daughter.

[eljomom]

SF Mom--how do you test B cells?

[Kayanne]

So, for now, I think most people assume that if you still have symptoms, then you still have an underlying infection.

 

i'm curious kayanne, by "people" do you mean parents or pandas doctors? or everyone involved?

thanks.

Thank you for calling me out on that...of course it is very vague. I would never presume to know anything that a doctor may think--unless it was stated directly to me in person--even in that situation I would still interpret it to apply to my child only.

 

I was just referring to the general beliefs of this forum...and I should add that just because it is generally believed by the participants who post here...it doesn't mean that in actuality it is true.

 

I hope I explained that well enough...

 

Sorry for the confusion.

[kimballot]

Test the B cells to see if there is disregulation. Although all my children had high CaM Kinase their T and B cells were functioning normally.

 

SF Mom - What test is done for T and B cell dysregulation? I am not familiar with that.

[SSS]

We've been on Azith. 200 mg for 32 days, we have had some serious backsliding recently (throat culture neg.)

We started off with Wows! on Azith.

Our Doctor today put in a script. for Augmentin XR to switch.

Good luck at your appointment!

[eljomom]

Pandas doc is sending us to Infectious Disease doc...too emotionally and mentally drained to post more tonight, but will tomorrow

[sf_mom]

We did it at Stanford Children's Hospital here in CA through their Allergy and Immunology Department. They told me they can tell a lot from T and B cells in terms of auto-immunity. Our twins were within normal range and they stated no auto-immunity but yet we had a lot of irregular labs (Low Igg 1 & 3, L RBC, L WBC, High Lymphocytes, elevated CAM, strep pneumo deficiencies, etc). They wanted to track my kids over time, continue to run labs and then maybe assist with SID if there was still a problem in a year. I didn't have that kind of time, nor desire to continue the debate.

 

CAM Kinase of 148 and 159. The one that had the most symptoms at the time (OCD/RAGE behavior, etc., etc.) had high Anti-Lysoganglioside and CAM of 148. The other who was less symptomatic (high anxiety, velcro syndrome, minimal speech, eye tic with high fevers, repeat illnesses, under weight etc., etc.) had normal Anti-neuronal Antibody Titers but her CAM was 159.

 

Others have had the test done as well but I am not sure if there is a specific name or lab.

Edited February 11, 2011 by SF Mom