are we the only ones using Penicillin

[dee45]

Hi,

I guess i am a little confused, I feel we are the only ones using pencillin and don't know whether I should push Dr. latimer in putting Anthony on something else. He still has some head tics that wax and wane so don't know whether to push the issue or not. I often think would another antibiotic work better. any thoughts from those on antibiotics would be appreciated. I left her message and she is suppose to call on Wednesday so if I could get some feedback that would be great. have a good evening everyone!!

 

Deanna

[ShaesMom]

Hi,

I guess i am a little confused, I feel we are the only ones using pencillin and don't know whether I should push Dr. latimer in putting Anthony on something else. He still has some head tics that wax and wane so don't know whether to push the issue or not. I often think would another antibiotic work better. any thoughts from those on antibiotics would be appreciated. I left her message and she is suppose to call on Wednesday so if I could get some feedback that would be great. have a good evening everyone!!

 

Deanna

 

 

We started with PenVK and she was about 70-75% back to herself. We switched to Erythromycin and we saw greater improvements all around.

[Iowamom]

Hi,

I guess i am a little confused, I feel we are the only ones using pencillin and don't know whether I should push Dr. latimer in putting Anthony on something else. He still has some head tics that wax and wane so don't know whether to push the issue or not. I often think would another antibiotic work better. any thoughts from those on antibiotics would be appreciated. I left her message and she is suppose to call on Wednesday so if I could get some feedback that would be great. have a good evening everyone!!

 

Deanna

Deanna-

I'll jump in with my thoughts on the penicillin question. Just thoughts. First, how long has Anthony been dx'd? Is his a case that has NOT gone on forever, misdiagnosed as other disorders? The first drug of choice is penicillin, because of its narrow spectrum and because it will do the trick on the strep--most of the time. She may be wanting to give the penicillin a fair shake before pulling out bigger guns. Many on this forum have had strep cases that haven't "behaved" and haven't responded to penicillin because our bodies aren't perfect test tube environments. (intracellular strep, biofilms, virulent serotypes, just plain stealthy strep...) Some of these cases have gone un/misdx'd for years (like my son's), and after giving penicillin more than a fair shake and evidenced by behavior and titers that keep bouncing up and down, move on to broader antibiotics. Another question: Have tics been a main symptom for your son? By the time Evan was dx'd he had a some of about everything, with tics being less of an issue. They ramped up the latest and disappeared first. I've read where others have had the" last to occur, first to go" thing happen with symptoms. Just some things to think about, or help you ask good questions when Dr. L calls. If penicillin (even Bicillin injections) would have worked, we wouldn't have switched to azith. I am guessing by reading the forum that many of the cases are pretty tough cases and not more easily brought under control. I am not sure where yours falls on the "PANDAS spectrum" (if there is such a thing). Just my thoughts.

 

Dawn

[greenmommy]

My son is on penicillin.

 

A

[P_Mom]

Both my boys are on Penicillin....won't switch unless I have to. Please let us know what Dr. Latimer says when you speak with her on Wednesday....I asked her twice (two different appointments) if she felt that Pen Vk was sufficient for my boys, and she said..."yes, I really do." I figured it has not failed yet in almost 2 years, so, I'll stick with it for now.....hopefully for the long run. (I wouldn't hesitate to switch if I needed to)

[Alex]

The study that Swedo and colleagues did on antibiotic prophylaxis showed penicillin and azithromycin to be pretty equal in effectiveness at preventing strep. The penicilln group got 250mg twice a day, and the zith group got 250mg twice on one day of the week. Of the kids in the study, 11 in the penecillin group and 12 in the zith group, one kid in each group got a strep infection over the year of the study. I'd personally prefer no strep infections but the researchers seemed pretty pleased. Here is the link to the study if interested. The advantage I see to the zith is that being a little late with a dose isn't as risky as missing a penicillin dose becasue the zith has carry over effectiveness.

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

[dee45]

Thanks everyone,

Anthony's main symptom is his tic, some minor OCD issues. I have read the Swedo article and Dr. Latimer feels that pen-v-k is effective I guess I would just love to see him tic free and I did know if switching antibiotics would be the answer. He has been on the pcn for a good 5 months I don't know what a fair time frame would be?? any ideas?

 

thanks to all that answered its great having a group to turn to when in doubt so thanks again.

 

Deanna

[sf_mom]

Our son is on Azithromycin and I believe the type of antibiotic you use is highly dependent on what potential strain of strep my be lurking in their system.

 

In my son's case we are fairly certain he was exposed to Scarlet Fever by a friend. His friend was treated off and on for months with different types of antibiotics to abate a swollen gland/strep with no success... eventually his adenoids were pulled and that seemed to help. BUT both of our sons are now considered to have PANDAS and the Azithromycin is working. Our son presented with more TICs than OCD.... 10 days post IVIG, I do not notice any OCD but has one remaining tic that presents mostly when he is tired. I'll keep you posted to see if it completely disappears. Remember in Sammy's case they tired several types antibiotics before they saw progress. I would definitely push for change if you don't see improvement.

[Alex]

When I did my earlier post I was thinking more strep prevention then PANDAS treatment. If there has been no improvement after 5 months I personally think you should be looking at another antibiotic or at least upping the dose of the penecillin. I read "Saving Sammy" last week and it makes a pretty convincing case that Augmentin is worth a try as a treatment for PANDAS symptoms. The thing with Sammy was that it wasn't just Augmentin that was effective, it was a certain dosage of Augmentin that was effective. If they lowered the dosage his symptoms came back. He was on 2000mg per day as the treatment dosage and was I would guess around 100lbs or more during that time frame. If they dropped to 1000 the symptoms came roaring back.

 

Unfortuantely, officialy, antibiotics are not considered a treatment for PANDAS but for strep only, even though there is a ton of anecdotal evidence that antibiotics work as a treatment given enough dosage. Hopefully a study will be done at some point. I know that a lot of Rheumatologists now believe in antibiotic therapy for other autoimmune disorders because they've had a lot of success. There are doctors out there though that believe in antibiotics as a treatment for PANDAS, but you just have to find one. Obviously the Pediatrician from the book believes that way, Dr Nicolaides out of New Jersey. We took our son to Dr. Geller, the other doctor from the book, and he precsribed Augmentin as the treatment. We chose to go the Pex route but know we have that in our back pocket just in case.

 

I think for anyone struggling to get full strength antibiotics it would be worth calling Dr. Nicolaides office to see if she would speak with your own doctor, or give your doctor the book. Either way, don't settle for continuing symptoms. This is treatable. Do everything you can to treat it. If your child has PANDAS then, by God, they should get over it completely if you do the right things.

[L Haven]

Hi,

I guess i am a little confused, I feel we are the only ones using pencillin and don't know whether I should push Dr. latimer in putting Anthony on something else. He still has some head tics that wax and wane so don't know whether to push the issue or not. I often think would another antibiotic work better. any thoughts from those on antibiotics would be appreciated. I left her message and she is suppose to call on Wednesday so if I could get some feedback that would be great. have a good evening everyone!!

 

Deanna

[L Haven]

We saw an immunologist today in Boston, and he put my 11 year old on 1000 mg of pennicillin as prophylaxis (my son has been in great distress).