Help me understand treatment vs recovery

[MMWG]

Hi all-

DS age 4 is going through his second round with strep since our diagnosis in December. First time, we did 5 days Azithromycin, noticed a spike in symptoms about a week after coming off the abx, and went on 2 weeks cephelaxin. Gradual improvement after completing antibiotics, and within about 3-4 weeks post abx we had a totally different kind--happy, pleasant, cooperative.

We went in for another strep test after stomach pain, fever, and tantrums, and it was positive. Doc put us on 2 weeks cephalexin since it ended up working before. Went back in a week and a half post abx and got a negative strep test. Several days later, on vacation, he stopped eating and his behavior became strange--agitated, insisting on doing things after he was told not to(and in some cases, spanked, which we rarely do), and becoming crazily insistant that he needed to do them--almost like a compulsion. We called our pedi and they prescribed another 2 weeks cephalaxin, which we are on now.

 

This is a learning curve for us and our doctor, who diagnosed the pandas, is a really smart guy and is constantly reading and staying up to date on what the research-approved PANDAS treatments are for us. So I think it will be a matter of time til we figure out the dosage and length of time for the abx. My question is, why is there such a lag between completing treatment and seeing improvement? I am hoping we see a similar pattern this time. What is the recovery that is taking place--and why would we get negative strep test but still have a spike in symptoms? Is it the antibodies still present in the brain? Is it a false negative?

 

I also asked about what else could be done to promote brain recovery during this period. I give him vitamins with DHA. Are there other safe suggestions?

 

Thanks in advance. I really want to understand what is going on as best I can so I can advocate for my little guy. As I am sure you understand, he has been through so much, and this is just the beginning. Meg

[thereishope]

First, if you went for a strep test a week and a half after finsihing abs,you could have gotten a false negative.

 

Also, you may have had a delay in taking abs and seeing improvement because the antibiotics slows the strep and gives your immune system a chance to kill the strep. Then you have to wait for the antibodies to lower after the infection is erradicated. With my son, I may see some improvement during the course of antibiotcis, but it still takes a long time for recovey.

 

I give Omega 3's as well and continue to do so even though he is in remission right now.

[Mary M]

We are still in the learning phase here too, but my dd12 has never tested positive for strep via rapid or cultured specimens. However, her titers were high this time (our first definite experience with PANDAS was 4 years ago--and titers were normal--the ped questioned PANDAS at this time but due to the titers being normal could not make a firm determination). This time, I guess we'll say we're lucky (?) the titers have been elevated and rising for months with no indication of strep symptoms and negative strep tests (rapid and cultured). So now the ped is quite confident (especially after every possible test has come back normal with the exception of ASO and ANTIDNAse and IGE). So it is possible that you child is experiencing the effects of his own antibodies which can take quite a long time to decrease. I think this may illuminate the "lag time" between abx and symptom improvement. These kids are not necessarily responding to the strep itself, it's the bodies own antibody response that at least my PANDA responds to.

 

I'm glad to read you have a Dr who is willing to work with you and become educated.

Edited May 17, 2010 by Mary M

[MomWithOCDSon]

My DS is also entirely classically asymptomatic for strep, and cultures tend to come back negative. But his titers are elevated nonetheless, so he's contracted it and is fighting it . . . or his immune system has gone "whack" and continues to manufacture the antibodies, even though the infection might be "ancient history." Like so many things with PANDAS, the jury is out, at least for the time being.

 

If you continue to browse through the threads on the forum . . . especially the "pinned" ones at the top, you'll see a lot of high-level, scientific discussion regarding PANDAS, why the symptoms and timing might manifest as they do, what's a play, etc. I'm so far from understanding it all myself that I'd only embarrass myself if I tried to explain it here, but the bottom line, it appears is inflammation. Inflammation is rarely a body's "friend." It causes many physical ailments, and it appears to cause a myriad of mental ones, as well.

 

My DS, to my knowledge, has not had an active strep infection for over 7 months, and yet he still requires antibiotics. When we try to decrease them, or remove them, his PANDAS behaviors return with greater severity and frequency than they are while he's taking the abx. Are they keeping the antibodies at bay? Do they have immune modulatory affects all their own? Do they have anti-inflammatory properties? All of these possibilities have been hypothesized, and some of them are under active study now. Unfortunately, the science behind all of this stuff remains in its infancy to a great degree.

[Stephanie2]

I'm sure you will get some very good explanations, but in my experience it took about 2 solid months of studying the threads on this forum before I could understand it all. I would suggest going to the following website and click on "about pandas" and then on "healthcare practitioner" to get a pretty good explanation on how it all works:

 

www.pandasresourcenetwork.com

 

The woman who started this website is the mom of "sneezing girl" who was on the Today Show a while back. Our doctor is on the medical advisory board...

 

BTW, my big "a-ha!" moment came when my sons' doc explained that many of the kids go on to react to anything that stimulates an immune response (allergies, viruses, bacteria, even a bad sunburn!). Before he explained that to me, I was going around chasing down positive strep tests and antibiotics and I couldn't understand why his symptoms were so up and down all the time. And that is why so many kids need to move on to IVIG and other things that regulate the immune system.

 

Stephanie

Hi all-

DS age 4 is going through his second round with strep since our diagnosis in December. First time, we did 5 days Azithromycin, noticed a spike in symptoms about a week after coming off the abx, and went on 2 weeks cephelaxin. Gradual improvement after completing antibiotics, and within about 3-4 weeks post abx we had a totally different kind--happy, pleasant, cooperative.

We went in for another strep test after stomach pain, fever, and tantrums, and it was positive. Doc put us on 2 weeks cephalexin since it ended up working before. Went back in a week and a half post abx and got a negative strep test. Several days later, on vacation, he stopped eating and his behavior became strange--agitated, insisting on doing things after he was told not to(and in some cases, spanked, which we rarely do), and becoming crazily insistant that he needed to do them--almost like a compulsion. We called our pedi and they prescribed another 2 weeks cephalaxin, which we are on now.

 

This is a learning curve for us and our doctor, who diagnosed the pandas, is a really smart guy and is constantly reading and staying up to date on what the research-approved PANDAS treatments are for us. So I think it will be a matter of time til we figure out the dosage and length of time for the abx. My question is, why is there such a lag between completing treatment and seeing improvement? I am hoping we see a similar pattern this time. What is the recovery that is taking place--and why would we get negative strep test but still have a spike in symptoms? Is it the antibodies still present in the brain? Is it a false negative?

 

I also asked about what else could be done to promote brain recovery during this period. I give him vitamins with DHA. Are there other safe suggestions?

 

Thanks in advance. I really want to understand what is going on as best I can so I can advocate for my little guy. As I am sure you understand, he has been through so much, and this is just the beginning. Meg

[MomWithOCDSon]

I also asked about what else could be done to promote brain recovery during this period. I give him vitamins with DHA. Are there other safe suggestions?

Meg --

 

Many of us find a number of supplements helpful. Omega 3's are good for their anti-inflammatory properties. Curcumin/tumeric is another natural anti-inflammatory, as well. Inositol (beginning with a low dose and working gradually upward) can act like a natural SSRI and help relieve some anxiety and anxiety-related behaviors. Vitamin D3 is another good one, as is a good B-complex.

 

I also just realized your post is titled "Help me understand treatment vs. recovery."

 

From our own experience as well as what I've read here and learned elsewhere from other PANDAS families, every kid is different. The fact that your DS is still quite young (4), and you've gotten the diagnosis already, might well mean your required treatment will be of shorter duration necessarily, and recovery could be relatively quickly on the heels of that. Anecdotally, at least, it appears that the sooner and younger PANDAS is identified, the more readily they respond to treatment and, maybe even more importantly, the shorter time they have for developing "coping behaviors" by way of OCD or anxiety that become harder to break the longer they are practiced.

 

All of that is generalization, though, and, again, purely anecdotal on my part. It will also depend on the overall health of your son's immune system (is it just elevated titers, or does he struggle with any immune deficiencies in addition, etc.?) and the opportunity for re-exposures to strep or other infectious agents that could exacerbate his condition over the next few years.

 

What does recovery look like? I think, generally slow and "saw-toothed," from what we've seen; again, it seems to vary with respect to the overall health of the child and his immune system, what, if any, comorbid conditions may exist (some PANDAS kids were first triggered by strep but then find they "flare" when exposed to other bacteria, viruses, even immunizations), how long the child has gone without medical intervention for the condition, how many exposures and/or exacerbations they've endured, etc.

[kimballot]

MMWG - you bring up some interesting questions. My son has NEVER EVER had a positive throat culture, but he has had PANDAS since invancy. He also never had an elevated ASO titer, but does have elevated DNASE B titeres.

 

When you say that your son no longer has strep, are you just referring to the throat culture? That could easily test negative but your son could still have the strep antibodies in his blood and / or a strep infection in some other part of his body. Are you getting blood tests for your son (ASO and DNASE B ), or are you relying on the throat culture?

 

Also, regarding ongoing recovery and safe alternatives, I agree with the omega 3 posts, and I am sure the other natural suggestions are also good (we are actually seeing a doc this week for some supplements for my son). Don't forget, too, that many folks use ibuprofen when kids are having an exacerbation due to the anti inflammatory effects.

Edited May 18, 2010 by kimballot