Help me wrap my tired head around this please!

[beeskneesmommy]

My 4 yr. old son has had significantly elevated Strep titers thru several blood draws starting 6/10, then 9/10, then 1/11, despite having his tonsils out last 8/10 and having no Strep + cultures thereafter. He started Cefdinir 1/11 in place of the Augmentin that he had been taking daily since last Fall, and did very well for almost 3 months, with extreme reduction or, most of the time absence of PANDAS symptomology. In May, his PANDAS symptoms returned with the typical roller coaster, but the symptoms were more acute than I have seen them in many months - reminiscent of last Fall when he had his acute episode. I felt sure that his titers would be elevated when we drew blood 2 weeks ago, but they are WAY down; ASO normal and Anti-Dnase only slightly elevated. Hmmmm. So, last Fri. we went into his doc at CHOP and asked for Azith. She won't give it to him as a prophylaxis, but was willing to give him a typical 5 day dose. I made sure that the 1st (Sun. night) was a loading dose (double) and have been giving it to him since. He is getting this on top of his Cefdinir. He has dramatically improved, from being an absolute mess over the weekend to being completely normal with full absence of PANDAS symptoms today. Now, my kiddos titers are normal, but the abx is successful, leading me to believe that the PANDAS response was a reaction to A.) another bacteria or virus or B.) hidden Strep. BUT, the titers are a measurement to the body's reaction to the presence of Strep. Therefor, if the titers are normal, the body is not having an adverse reaction to Strep, so even if it is hidden in there, it may not be the cause of the current PANDAS response....????right???? In addition, the "allergies" that he has been suffering with round the clock have disappeared. This pattern also happened the last time he took Azith. last Nov. Any ideas? Can someone help me wrap my head around all of this?

[peglem]

I don't have any real answers for you, but wanted to respond to this:

 

BUT, the titers are a measurement to the body's reaction to the presence of Strep. Therefor, if the titers are normal, the body is not having an adverse reaction to Strep, so even if it is hidden in there, it may not be the cause of the current PANDAS response....????right???? In addition, the "allergies" that he has been suffering with round the clock have disappeared. This pattern also happened the last time he took Azith. last Nov. Any ideas? Can someone help me wrap my head around all of this?

 

The titers (ASO and AntiDnase) are a measurement of the immune response to strep exotoxins, not the bacteria. And these titers do not have an adverse effect on the body at all- they are a healthy and appropriate response to rid the body of those toxins. At the same time there are many, many antigens presented on strep bacteria that the immune system could still be responding to (if the strep is still present). So, you could still be having a strep based autoimmune response, even if those strep titers are not elevated.

 

I wonder if the "allergies" are misdx'd infections, if they clear with abx?

[kimballot]

Interesting....

 

You may want to have the strep titers redrawn in a couple of weeks as it takes 3+ weeks to see a rise and ASO rises before DNASE.

 

You may also want to check for mycoplasma and lyme - if the azith is helping it is likely bacterial.

[JJMom39]

Interesting....

 

You may want to have the strep titers redrawn in a couple of weeks as it takes 3+ weeks to see a rise and ASO rises before DNASE.

 

You may also want to check for mycoplasma and lyme - if the azith is helping it is likely bacterial.

I was thinking the same things. It could be that his titers had not begun to rise again when you had them checked two weeks ago. If you check them again in a week or two they might be higher. Or, it could be another bacterial infection. Or, it could be strep infection with normal titers--this can happen.

[thereishope]

It makes me wonder if he may have had a sinus infection? It took two antibiotics taken simultaneously for my non-PANDAS son's sinus infection to go once. First he had Augmentin, then added Azith. If it was a sinus infection, that would explain the allergy like symptoms too. Sinus infections can sometimes only be detected via MRI, not by only looking in it like a doctor does.

Edited June 15, 2011 by Vickie

[beeskneesmommy]

Vickie - I have been thinking sinus infection for months, especially with the response to Azith. x 3. It always comes back after a while, however. Makes me wonder if there isn't some sort of chronic bacterial illness that is causing these sinus probs. NO pediatrician will even consider anything but allergies (that seems to be their answer to everything). So, do we need to seek out an MRI? We are seeing Dr. Bouboulis in late July, specifically for his expertise in PANDAS and related allergy issues, as my son's blood and scratch allergy tests came back inconsistent and, well, looking crazy with no response to the histamine control (scratch).

 

Thank you, everyone, for your ideas. Sometimes I feel like I am in my own little manic state because my brain never stops trying to figure it all out! Anyone for up for a day at the beach with pina coladas? ...Hah.

[thereishope]

Have you seen an ENT? Kimballot also has a thread about her son's ENT doing a non-invasive procedure to see if there's inflammation http://www.latitudes.org/forums/index.php?showtopic=13981 Something to consider asking about when you search for an ENT.

 

btw...that bad sinus infection my son had that I referred to was probably allergy induced.