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Hi Everyone,

 

I have just started the process of having my son tested for PANDAS. The doctor has ordered 12 different blood tests & believes from DS's clinical history that he is a PANDAS candidate. Since we just had a postive strep test before the consult & his symptoms resolved after 10 days on Amoxicillin (second time that happened with 2 months), he decided to give him another 10 day dose of Augmentin & then see what the blood tests revealed.

 

We haven't gotten the blood tests back yet, but my sons tics returned while on the Augmentin, it didn't seem to have the same effect as the Amoxicillin.

 

Does this make any sense? Does it mean anything? I'm so confused.

 

Thanks,

Lynn

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What dose on the Augmentin, maybe someone else can help but I think sometimes it depends on the does. 875 worked for us in the beginning but later it did not help at all had to go to the 1000xr. Just a thought.

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Augmentin is amoxicillin plus clavulanic acid, which is supposed to "boost" the bacteria-busting properties of the amoxicillin. I suppose it's possible, however, that, say, a 500 mg. dose of amoxicillin versus a 500 mg. dose of Augmentin could have differing efficacies because the 500 mg. of Augmentin is going to inherently contain less than 500 mg. of amoxicillin in order to make room for the clav acid piece. So maybe your child needs a higher dose of Augmentin than was required of amoxicillin?

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Maybe the dosing is the issue. He was on 400 mg of Amox 2x a day & he was then put on 250 mg of Augmentin 2x a day. I am not sure why the Dr. reduced the Augmentin dose, I just assumed it was because the Augmentin was stronger.

 

It just didn't make any sense to me because his response to the Amox has been so rapid (within 72 hours) & drastic and the Augmentin seemed to do nothing.

 

I thought maybe it was already not working anymore & maybe I'm on the wrong track.

 

Thanks.

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Same happened with my son - about 10 documented Strep infections followed by abx, resulting in absence of PANDAS symptoms that had appeared with the Strep. Started with Amox., which then became ineffective. Augmentin worked when Amox. failed. However, if Amox. has not failed you, not sure why he is starting Augmentin. Question: what are the blood tests? 10 days after abx & Strep infection is too soon to see a significant titer decrease. There are no blood tests for PANDAS. What is he looking for specifically in his choice to do a blood draw after a 10 days of Augmentin ...or am I reading this incorrectly? :)

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Some parents say their kids responded positively to amoxicillin at first then around the two week mark they dramaticaly backslide and symptoms resurface. So, add that to a possible too low dose of Augmentin that the others have suggested and that could be the problem. Before thinking you may be on the wrong track, I would get a higher dose or switch to a different antibiotic (but not amoxicillin again).

Edited by Vickie
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Since we are at the very beginning stages of this, we had the initial consult. The Dr. ordered the following tests:

Anti-Strep (ASO)

Anti-DNase B

Streptozyme

Myoplasma Pneumoniae (igG/Igm)

Lyme Western Blot

Quantitative Immunolobulis

IgG Subclasses

Ferritin

Ceruloplasmin

Pneumococcal Antibody Titers

CBC w/Diff

Vitamin D Levels

 

We had positive strep in February & May, both treated with Amox & all symptoms went away within 72 hours. My older son had a respiratory infection shortly after the consult & I had noticed my younger son starting to exhibit a few symptoms returning. Dr. said he was going to put him on a round of Augmentin. I don't know why he didn't keep DS on the Amox & I know there isn't a "PANDAS" test per se, but it was my understanding the above blood work would give a better indication of what we are dealing with.

 

I don't know, I am just tired of being sad, frustrated & confused all the time.

 

Anyway, thanks for listening & your responses. :)

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I think antibiotics destroy gut flora which regulate th1/th2/th17 and t-reg cells. Maybe it would be best to have no antibiotics at all. It might protect against strep but in the long run only worsening the actual disease?

 

Well, if we did not have abx, my son would be lost to us. I truly know in my heart of hearts that this is what has saved him and is continuing to save him. I does hurt the flora, but this can be regulated and one has to choose which is the more important piece to treat.

Edited by Beeskneesmommy
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I am also treating DS with a strict all natural diet & supplements. He gets probiotics & cultured coconut milk & seems to have less gut issues then the rest of my family. Also, I was on about 5 antibiotics a year from the time I was 6-15 for chronic strep throat & upper respiratory infections. I am fine & have no resistance to antibiotics. Yes, I do have some bowel issues (that also run in my family), but I'd take that any-day over the tics & such my son has to deal with.

 

I am not sold on the constant antibiotics, but if he is sick with strep and/or really exacerbating I'm not sure I think that is such a bad thing, as long as they work!

 

Again, I'm a newbie & don't even understand all of this yet, so that's just my two cents.

 

*Beeskneesmommy - Thanks :)

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:) I do not think that any of us wants to pump our children with abx, or any other meds for that matter! However, I am thankful that we have something that actually works for some of our kids. My son is a classic Strep:PANDAS kiddo. No other health concerns prior to the onset of this disorder. When he had his acute episode last Sept. (which, FYI, was brought on in a speedier and more disastrous manner after a tonsillectomy while infected with active Strep) I am thankful that I was able to turn to something for help. I got him on Augmentin thru his Ped. even prior to getting him to the specialist 5 days later. If we had gotten him on an abx regime at the start of his PANDAS symptoms (almost 2 years earlier) perhaps we could have circumvented the roller coaster that is our lives now.

 

Lynne, I wish you well and I am rooting for you guys!!

Edited by Beeskneesmommy
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