Brand Spankin New Here..Pls help

[thereishope]

Antibiotics don't rule/control your immune system, they help with the bacteria. Your immune system will still activate when exposed and start building up a defense to avoid infection. PANDAS is caused by ANTIBODIES not by the actual strep bacteria. It's hard idea to grasp at first, but once it sinks in, it makes sense.

 

Have your read Buster's FAQ page? http://www.latitudes.org/forums/index.php?showtopic=6266

If not, I suggest printing it, reading it, and bookmark it for reference. It has a lot of good info.

Edited July 15, 2010 by Vickie

[EAMom]

How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)

 

Like you said, it varies, but I would give it at least a month. But, you have to make sure she is not being re-exposed. My son will still react to family members even though he has been on high dose Augmentin for months

 

 

For matis mom,

I'm having a hard time understanding this aspect. if one is on high dose abx, and it doesn't even stop them from reacting to someone who is a carrier, then how could the abx be considered effective? what is the point then of doing these abx if it doesn't actually prevent anything? not directing this at you personally, but since you stated this, just asking the panel what this means. to me, it means abx are not effective. I've seen a few folks here claim the same, so again, how do we know that 'carriers' or whatnot is the trigger for the upswing or reaction in behaviors/symptoms?

 

thanks

Faith

 

For us, antibiotics helped things from becoming "full-blown". Our dd still reacted to others with strep infection, but her symptoms (irritability, handwriting decline, increased anxiety, return of tics) were MINOR compared to her with a full-blown infection (anorexia nervosa, bipolar behavior, nurse recommending long term psychiatric hospitalization). For some of the forum (T. Mom, Kayanne), they have found good remission with just antibiotics (and a course of steroids), and may not have this problem. For others, just antibiotics were not enough, and so then IVIG and/or pex would be the next step to consider.

 

Also, antibiotics (for us Azith) helps even in the absence of an obvious carrier or strep exposure. Perhaps that was the anti-inflammatory/immune modulating part of Azith? Although I do think that some of these kids have low levels of strep hiding out in their bodies (kind of like how lyme hides out and needs long term abs) that isn't being killed off with the regular 10 days of antibiotics.

[matis_mom]

For matis mom,

I'm having a hard time understanding this aspect. if one is on high dose abx, and it doesn't even stop them from reacting to someone who is a carrier, then how could the abx be considered effective? what is the point then of doing these abx if it doesn't actually prevent anything? not directing this at you personally, but since you stated this, just asking the panel what this means. to me, it means abx are not effective. I've seen a few folks here claim the same, so again, how do we know that 'carriers' or whatnot is the trigger for the upswing or reaction in behaviors/symptoms?

 

thanks

Faith

It's kind of hard to explain... but I'll try. Antibiotics keep the bacteria from reproducing at fast rates, they slow it down enough so that your immune system can win the war. But abxs do not completely erradicate the infection on their own (maybe in high dose they will?). So for my son, I believe he still has strep hiding somewhere, as his ASO is still elevated after a year of treatment. But symptoms are at this point very mild and manageable. However, if he gets exposed again, the immune system will get activated and start producing more antibodies (this is a the normal response), but those antibodies are still faulty and attack the wrong thing (brain, joints, etc). He will not get a new infection, because of the abxs, but there will still be some reaction. What the antibodies do is keep him from getting a full-blown infection, and so there won't be as many antibodies needed, and the PANDAS symptoms will increase a bit, but not to a full-blown exacerbation.

Our next step is to get plasmapheresis, which will remove all those wacko antibodies so they'll leave his brain alone.

Another option is IVIG, where the child receives donor antibodies, and so the immune system shuts down and stops producing faulty antibodies.

But either way, it is important to make sure you have truly erradicated the infection. This is hard to do sometimes, and many here have had to try different antibiotics at different strengths until they found what worked. It can get a bit frustrating, as there is no way to know 100% for sure you are strep-free.

Hope this makes sense! But if it doesn't, keep asking. It took me a while to get this whole thing, and even now I "think" I get it, but it's hard to explain something I can barely grasp.

Edited July 15, 2010 by mati's mom