Important question!

[1tiredmama]

I just remembered something that leads me to ask a very important question. When my son was 7 years old (only bipolar, sensory issues, and joint pain back then), he was admitted to the hospital for a severe infection of a lymph node in his neck. He was given a strong antibiotic intravenously for 4 days, then sent home on the same drug orally for a time. Looking back, I don't recall his neuropsychiatric symptoms improving at all. In fact, just months later, he had his first admission onto a child psych unit.

 

So, my question is this: Does the fact that my son showed no behavioral improvement following IV antibiotic treatment rule out PITAND?

 

Thank you!

[EAMom]

No.

 

It took 4 different antibiotics (Azithromycin is the one that worked for us) b-4 my dd really started to turn around. After 5 days of Azith, we thought her mood was improving a bit (she was yelling at us less), after 2 weeks her OCD started to improve, after 6 weeks, her tics went away.

 

So, I can't say that 4 days of antibiotics (even IV) would rule out PITANDS, esp. if you have a complicated case . For example, if Lyme were involved, many kids seem to get WORSE initially on antibiotics b/c of herxing (die off).

 

Have you tried Ibuprofen? Some PANDAS kids respond to Ibuprofen. give full strength, for an adult-sized kid, at least 400mg 3-4x daily (actually, I'm only 120 pounds and I've been told I can take 800mg) for a few days and see if you notice any behavior change. (Give it with food.) It's not by any means a definitive test, but if things improve on Ibuprofen, it's a clue.

 

Or, what might be a better test, is to give him a single big dose (800mg) and watch for behavior changes over the next 40min-6hours. I say this, b/c I think I notice a difference when my 90# child gets 200mg vs 400mg, so try the larger dose and see what happens.

Edited February 10, 2012 by EAMom

[LNN]

Agree with EAmom - a failure to respond in a very short time (4 days of abx is nothing for some infections) on one single abx isn't that telling or uncommon. Different abx tackle different infections. If you don't use the right abx, it won't make a dent.

 

But before you try abx, one thing you may want to consider is doing a lyme test. Lyme tests are notoriously unreliable and controversial. But last Fall, a new lyme test came out that can culture lyme bacteria and take a picture of the bacteria in your blood. It removes the debate that surrounds the other tests. Can't argue with a picture of a lyme spirochette. But you need to be off antibiotics for 4 weeks before doing the test. You can go to the lyme forum for more info if you're interested.

[tpotter]

Agree with EAmom - a failure to respond in a very short time (4 days of abx is nothing for some infections) on one single abx isn't that telling or uncommon. Different abx tackle different infections. If you don't use the right abx, it won't make a dent.

 

But before you try abx, one thing you may want to consider is doing a lyme test. Lyme tests are notoriously unreliable and controversial. But last Fall, a new lyme test came out that can culture lyme bacteria and take a picture of the bacteria in your blood. It removes the debate that surrounds the other tests. Can't argue with a picture of a lyme spirochette. But you need to be off antibiotics for 4 weeks before doing the test. You can go to the lyme forum for more info if you're interested.

 

 

Agree with EAMom and LLM. I would also check for Mycoplasma pneumonia (which can be a co-infection of lyme, but also can stand alone.) Turns out I had/have it (still fighting it after 1 1/2 years), and gave it to my children. MycoP and Lyme (particularly bartonella) cause neuropsych symptoms, and mycoP can cause rages, which both my DS's had plenty of.)

 

I have a list of tests that different people on the forums (PANDAS/PITAND and Lyme) have contributed to. These are tests that their children received. It is quite extensive, but checks the immune system, diffferent infections (bacterial and viral), lyme, etc. etc. They are tests that the different PANDAS/PITAND and Lyme specialists have ordered. If you want it, just PM me.

[1tiredmama]

Thank you all for your replies. I'll keep pushing ahead. EAmom, I'm going to try the Ibuprofen test. My son takes Lithium, though, which means that I have to be very careful. It can cause Lithium toxicity. I can only do such a trial for a few days. I'll let you know if anything happens.

[EAMom]

Thank you all for your replies. I'll keep pushing ahead. EAmom, I'm going to try the Ibuprofen test. My son takes Lithium, though, which means that I have to be very careful. It can cause Lithium toxicity. I can only do such a trial for a few days. I'll let you know if anything happens.

Yeah...I don't know if it's okay to give that big 800mg dose over and over again?

 

You might do the big dose, and then see what happens. If you are going to repeat the dosing again in 6 hours, not sure if the 800mg is okay?

 

I'll take 800mg myself, but not on a regular 3-4x day basis.