Amoxicillin and PANDAS

[Debbie1]

It has now been two weeks since we got blood work results back showing VERY high ASO and AntiDNAse B titers. The pediatrician and neuro put him on 10 days of amoxicillin which he finished this past Monday.

 

During the first several days on the antibiotics, his symptoms appeared slightly worse. It was not until he was at the end of the antibiotics that he seemed better. He has now had several days were his tics seem much better (although some of the OCD behaviors seem to linger). He is still on other meds and am not sure how much they are masking his symptoms. My question is - why would he seem to be worse for several days on the antibiotic?

[Dedee]

Debbie,

 

I am not sure I have the answer to your question. My son developed his first episode (sudden & explosive) of tics when he was taking amoxicillin for strep. It was about the third day when he woke with the terrible tics, which he had never had before. I am sure that it was the strep not the amoxicillin. After a long journey he now is doing great on amoxicillin twice daily and is off all his other meds for ocd, tics etc. I think the strep will cause changes in behavior at different times in the infectious process depending on the current antibody level and I am sure, many other variables we have no idea about. Now, that being said, I have heard of some children who do much worse with antibiotics than without. However, if it did eventually seem to help then I think that would exclude you from this scenario. It is truly strange how each child reacts so differently to treatment. Well, I guess if this were an easy illness, we wouldn't be here. Keep up the good work and hang in there!

 

Dedee

[pmoreno]

Hi Debbie:

My daughter just had IVIG with Dr. K in Chicago this past weekend. He put her on prophylactic augmentin and he mentioned that amoxicillin does almost nothing for strep. It would be his last choice to give. Henceworth, it may be that it worked to a certain extent, but probably isn't all that effective. My daughter had a diagnosed strep throat in June - she was on amoxicillin for 10 days. A month later her pandas came back (after being gone for about 4 months) Her ASO was high. Pat

 

 

 

It has now been two weeks since we got blood work results back showing VERY high ASO and AntiDNAse B titers. The pediatrician and neuro put him on 10 days of amoxicillin which he finished this past Monday.

 

During the first several days on the antibiotics, his symptoms appeared slightly worse. It was not until he was at the end of the antibiotics that he seemed better. He has now had several days were his tics seem much better (although some of the OCD behaviors seem to linger). He is still on other meds and am not sure how much they are masking his symptoms. My question is - why would he seem to be worse for several days on the antibiotic?

[pmoreno]

It has now been two weeks since we got blood work results back showing VERY high ASO and AntiDNAse B titers. The pediatrician and neuro put him on 10 days of amoxicillin which he finished this past Monday.

 

During the first several days on the antibiotics, his symptoms appeared slightly worse. It was not until he was at the end of the antibiotics that he seemed better. He has now had several days were his tics seem much better (although some of the OCD behaviors seem to linger). He is still on other meds and am not sure how much they are masking his symptoms. My question is - why would he seem to be worse for several days on the antibiotic?

[pmoreno]

As I had just replied to Debbie, I will tell you also that Dr. K in Chicago feels that the amoxicillin is not very effective against strep - he usually starts with augmentin, and if that doesn't work, then moves on the keflex or azithromycin. But the amox is not even considered. Probably explains why your son got his symptoms while still on the antibiotic. Even though he might be doing well on it right now, it may be coincidental - he may be in a waning period anyway and might not be having any symptoms regardless if he were on an abx or not. Pat

 

 

Debbie,

 

I am not sure I have the answer to your question. My son developed his first episode (sudden & explosive) of tics when he was taking amoxicillin for strep. It was about the third day when he woke with the terrible tics, which he had never had before. I am sure that it was the strep not the amoxicillin. After a long journey he now is doing great on amoxicillin twice daily and is off all his other meds for ocd, tics etc. I think the strep will cause changes in behavior at different times in the infectious process depending on the current antibody level and I am sure, many other variables we have no idea about. Now, that being said, I have heard of some children who do much worse with antibiotics than without. However, if it did eventually seem to help then I think that would exclude you from this scenario. It is truly strange how each child reacts so differently to treatment. Well, I guess if this were an easy illness, we wouldn't be here. Keep up the good work and hang in there!

 

Dedee

[P_Mom]

pat..well........please tell us about the IVIG! How did it go?

[EAMom]

My theory is that the amoxicillin may be effective in cases where the strep is actively replicating (perhaps strep recently caught), child's immune response is decent, active pharyngitis.

 

I would guess that the difficult, chronic, "smoldering", or severe cases that Dr. K. sees don't respond to Amoxicillin....'cause if they did, why would they do the IVIG in the first place? Perhaps by this time, strep is either intracellular, otherwise resistant to amoxicillin, or the child's immune system is too "whacked out " by the chronic strep or PANDAS to be helped by mere amoxicillin.

 

Those are my theories at least. Amoxicillin didn't do much for my dd (except cause a false neg. on throat culture!)

[Debbie1]

Thanks everyone for the input.

 

We had six great days after the amox. but I fear we are now on a downward trend. Tics are a little more frequent now as well as certain OCD behaviors.

 

Could be normal wax and wane, but it looks like the improvement was more likely related to the amox. During those six days, we saw a child we hadn't seen in a long time. Very pleasant, agreeable, happy and enjoyable to be around.

 

I am holding out at least a few more days before I call the doctor to see how he does. I hope I am able to hold out three weeks until I see a new doctor who I was told is quite knowledgable about PANDAS and treatment options. We are hoping to get a clear diagnosis and a treatment plan.

 

My existing doctor will most likely try a longer round of amox. as his next step.

[pmoreno]

Debbie,

 

I've heard that the amoxicillin sometimes works at first but then stops working and generally only works well for an acute infection, but may not work for long term prophylactic use - I've heard augmentin is a good one to start off with and then if that doesn't work - next step is Keflex or azithromycin. I would probably not want to do a repeat cycle of amoxicillin because it wouldn't be very effective. I've heard this from my daughter's doctor who is quite knowledgeable about this and also after reading a lot of these posts & other info. Pat

 

 

 

Thanks everyone for the input.

 

We had six great days after the amox. but I fear we are now on a downward trend. Tics are a little more frequent now as well as certain OCD behaviors.

 

Could be normal wax and wane, but it looks like the improvement was more likely related to the amox. During those six days, we saw a child we hadn't seen in a long time. Very pleasant, agreeable, happy and enjoyable to be around.

 

I am holding out at least a few more days before I call the doctor to see how he does. I hope I am able to hold out three weeks until I see a new doctor who I was told is quite knowledgable about PANDAS and treatment options. We are hoping to get a clear diagnosis and a treatment plan.

 

My existing doctor will most likely try a longer round of amox. as his next step.