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

[eljomom]

DD7 has was on Augmentin for one month. Might have maybe, maybe, maybe seen a tiny bit less ticcing around week 3, but then exposed to stomach virus, and back to "baseline" of the same plethora of tics and ocd-ish stuff as when it got bad this summer. Switched to Zithromax (100 mg/day)---dd is 45 pounds. First week was he!!ish, with her hardly eating, etc. Then we've had a few days here and there where there seems to be a little less tics/compulsive tics, but then within a couple days, back to the same 'ole, same 'ole. We have noticed lessening of separation anxiety during the day.

 

Remember, she was caught late in the game, after possibly a couple years without treatment from when some of the mild ocd started, and months after the 1 day high fever and 3 straight months of off and on impetigo (STAPH) that she finally had 10 days of Augmentin for, with no help. Finally started abx mid november. Since I can't say as a whole we have seen any benefit at all, I was thinking of asking for a change. Even though in my heart of hearts, I feel we are in autoimmune phase 2 , where we are past antibiotics being truly helpful.

 

Wondering, based on her history, with recurrent URI's, the staph, etc....would anyone recommend Keflex for a trial? Or asking to up the Zithromax? Or Augmentin XR, back to Augmentin???? Or Omnicef ( what the heck is Omnicef anyhow)??

 

Just lookin' for input, as we go tomorrow for follow up. Thanks.

[peglem]

I think bactrim is the recommended rx for staph, but not particularly good for strep. Maybe add bactrim to the zith?

[thenmama]

xx

Edited March 26, 2013 by thenmama

[colleenrn]

I would increase the Zithromax to 250 mg/day. For her weight, that is the treatment dose. You could decrease the dose in the future if needed.

[eljomom]

Thanks guys:)

Question though...the staph was back in July, August and September. Early Nov., thought I was a little bit of another skin infection starting, but put mupirocin on and it was better. So would there still be any reason to think staph was an issue at this point???

[Kayanne]

Good luck with your appointment.

 

Both Keflex and Omnicef are cephalosporins. They are a separate class of antibiotics, that are either derived from penicillin or are similar in chemical structure to penicillin--I'm not sure, I don't understand it, but that is why there are warnings about penicillin allergies if you take a cephalosporin.

 

I was told that with the first generation cephalosporins (Keflex is one) it is rare but possible to have an allergic reaction if you have had a reaction to a penicillin. And that with the third generation cephalosporins (Omnicef is one)it is a possibility, but it is practically unheard of. This particular allergist/immunologist told me he has never seen it.

 

Our pediatrician thinks that cephalosporins are better for strep than penicillins.

 

My daughter is currently taking 150mg (about half the treatment dose) of Omnicef daily as a prophylaxis. It has been more of an experiment for us, because we really didn't know what to give her. She has had a rash from amoxicillin (twice), so the penicillin class of antibiotics is out.

Edited February 10, 2011 by Kayanne

[momofgirls]

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.

 

 

 

DD7 has was on Augmentin for one month. Might have maybe, maybe, maybe seen a tiny bit less ticcing around week 3, but then exposed to stomach virus, and back to "baseline" of the same plethora of tics and ocd-ish stuff as when it got bad this summer. Switched to Zithromax (100 mg/day)---dd is 45 pounds. First week was he!!ish, with her hardly eating, etc. Then we've had a few days here and there where there seems to be a little less tics/compulsive tics, but then within a couple days, back to the same 'ole, same 'ole. We have noticed lessening of separation anxiety during the day.

 

Remember, she was caught late in the game, after possibly a couple years without treatment from when some of the mild ocd started, and months after the 1 day high fever and 3 straight months of off and on impetigo (STAPH) that she finally had 10 days of Augmentin for, with no help. Finally started abx mid november. Since I can't say as a whole we have seen any benefit at all, I was thinking of asking for a change. Even though in my heart of hearts, I feel we are in autoimmune phase 2 , where we are past antibiotics being truly helpful.

 

Wondering, based on her history, with recurrent URI's, the staph, etc....would anyone recommend Keflex for a trial? Or asking to up the Zithromax? Or Augmentin XR, back to Augmentin???? Or Omnicef ( what the heck is Omnicef anyhow)??

 

Just lookin' for input, as we go tomorrow for follow up. Thanks.

[eljomom]

MOMOFGIRLS--thank you!!! When i first started reading your reply, I thought---"yes--she's agreeing with me about this just being autoimmune at this point!"---but I have to say, I am NOT comfortable with steroids yet, as my "gut" is telling me that there may still be something underlying. I do think it's "both" at this point. Other than Lyme, strep titers and myco p titers, we have not looked for anything else.

I hate what these antibiotics might be doing to her. That scares me. I wish I could get enough of a response to think "maybe" they are helping. I will discuss with pandas doc today, but not sure this particular one does much digging for underlying stuff:(

[colleenrn]

My concern would be that she could have an active strep infection on only 100mg of zithromax and I would want to increase it to a treatment dose, if only for a few weeks and then drop back down to 100/day.

[Kayanne]

My concern would be that she could have an active strep infection on only 100mg of zithromax and I would want to increase it to a treatment dose, if only for a few weeks and then drop back down to 100/day.

I think this is really good advice.

 

But considering the "autoimmune" component to this, you wouldn't really see results until the offending auto-antibodies recede. And also, many have seen a quick backslide when the antibiotics are stopped, so clearly there are some other benefits to the antibiotics...it's just not fully understood. However, generally doctors do know that many types are anti-inflammatory.

 

So it can be a long process.

 

I agree with Momofgirls, and she explained it well too. That is why I think dropping down to a prophylaxis dose before symptoms are gone is jumping the gun a bit.

 

It's a dilemma -- You don't know if the infection is cleared until the symptoms are gone.

[eljomom]

Okay, so how do the auto-antibodies receed, if they are basically remembering (B cells?) that the basal ganglia is "strep" -- and the basal ganglia ain't goin' anywhere??? This is a huge unanswered question for me!

[Fixit]

agree...well said to all

[Kayanne]

Okay, so how do the auto-antibodies receed, if they are basically remembering (B cells?) that the basal ganglia is "strep" -- and the basal ganglia ain't goin' anywhere??? This is a huge unanswered question for me!

 

Don't take my word for it because I am not an expert at all.

 

The way I understand it is, once the strep is no longer "tagging" parts of the body/brain because it has all been eradicated, then the body will stop producing the offending antibodies. However, it can be a slow process--over several weeks for the anitibodies to recede, and then for the brain to heal. It's not the actual basal ganglia that the immune cells actually attack. It is the chemicals that the strep creates as a decoy, and then plants it on certain body parts--and the basal ganglia is hindered in the process.

 

This of course is based on the original research that showed a significant remission between episodes...so it was theorized that the antibodies recede. And they made a lot of correlations with RF and SC, which also shows remission.

 

But I think after listening to Dr. Swedo's interview, I am under the impression, that there are still too many unknown factors. So there could be some likelihood that this ends up being a continuous autoimmune problem once the right circumstances are set in motion...beats me as to what those circumstances are, though.

 

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

[Worried_Dad]

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.

[sf_mom]

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.