no antibiotics

[melanie]

Danys titers are normal so his neurologist says no antibiotics!!! 3 1/2 weeks post IVIG He says he doesnt need it

 

Melanie

[peglem]

I'd be tempted to order some online and use them anyway.

[colleenrn]

OK, I going to be known a the "antibiotic pusher" given all my posts on antibiotics, BUT so be it.

 

I really, really think that Danny needs to be on antibiotics and would benfit from them. If he gets exposed to strep again, would you be back at square one?

 

Given the severity of his symptoms, you may be able to very assertively and politely demand them. If that doesn't work, I would find them elsewhere.

 

Colleen

[fuelforall]

I'd like to see a discussion of this among knowledgable members.

What do Dr.s K and L say?

Is it based on low tiers, should it be, should there be periodic strep tests? Like to get some feedback here!

 

Michael

[dcmom]

This is one area where at least we have studies and science to back us (pandas parents) up. For pandas (assuming that is what Danny has), prophylactic antibiotics are indicated to prevent future strep infections (which could then cause another pandas episode). Even if IVIG has reset Danny's immune system, he still most likely has an underlying genetic succecptibility to pandas, which can be triggered if he contracts strep.

 

This is not even mentioning the other relief antibiotics seem to provide these kids. (This is not backed up by scientific studies, but by clinical observations by knowledgeable pandas docs; ie Dr Perlmutter who worked with Swedo).

 

Melanie- consider going back to Dr Triffileti. He is opening a new practice in NJ. I know you had an issue with him in the past- but he is truly committed and caring to these patients. He is a total believer, and will be your ally.

[melanie]

I'd like to see a discussion of this among knowledgable members.

What do Dr.s K and L say?

Is it based on low tiers, should it be, should there be periodic strep tests? Like to get some feedback here!

 

Michael

 

 

I just hung up the # with the md He said after I see the infectious disease md om the 13th he will do whatever he suggests. Hes hoping that danny can get monthly infusions but still wants to wait until then. He had a culture too and nothing no strep his behavior has been very good although yesterday was a little off a little ocd popping up too. Still nowhere as bad as before

 

Mel

[EAMom]

Strep titers (is he talking ASO? anti-dnse b ) have nothing to do with whether your son needs antibiotics. Strep titers measure whether your child has had a strep infection in the PAST. As an added note, some kids with strep (37%), including pandas kids, never get elevated titers even when they have had a recent strep infection. http://www.latitudes.org/forums/index.php?...st=0#entry29483

 

The main purpose of antibiotics post-IVIG is to prevent NEW strep infections.

 

Getting a new strep infection can wipe away any benefit gained from the IVIG you just went through. IMO going without anti-biotics is like playing russian roullette with strep.

 

The kids in Swedo's PEX/IVIG study were all on antibiotics for the year after PEX /IVIG, which was the length of the study (and it is my understanding that most stayed on antibiotics much longer than that). Dr. K. recommends antibiotics for at least a year post IVIG (and is thinking of extending this). As far as I know, all of those who have had IVIG/pex with Dr. Latimer are also getting long term antibiotics.

 

One option would be to recommend that your neurologist consult with Dr. Latimer (since she is also a neurologist, maybe he would listen to her). If he doesn't, he is a really big idiot...

[EAMom]

antibiotics would be a lot cheaper and safer and less invasive than monthly IVIG

 

IMO it is possible that Danny would benefit from more IVIG (due to his age, severe symptoms etc) however, that doesn't mean he should not also stay on antitiobics.

 

It would be more reasonable, if your neurolgist isn't sure about the abs, to write a script to at least get you started until you can see the infectious dz MD.

[P_Mom]

Dr. Latimer told me my kids would be on proph. antibiotics "until PANDAS is a distant memory."

[Kayanne]

Dr. L also has my dd on prophylactic antibiotics, and she has not mentioned anything about a limit to how long she will prescribe them.

This is like Rhuematic Fever...it just effects the brain instead of the heart and joints....stress this to the neuorologist...the PROVEN PROTOCOL for RF is prophylactic antibiotics.

This is also considered to be a lower spectrum of Sydenham's Chorea....which by the way also calls for prophylactic antibiotics.

I also know that Dr. L will take your neurologist's call...ask him to call her.

I wholeheartely agree with all the other posts.

Edited October 17, 2013 by Kayanne

[fuelforall]

Thanks everybody. Re augmentin

Has anyone else heard augmentin causes diarrhea in kids?

[dcmom]

I don't know the specifics on Augmentin- but I believe all antibiotics can cause diarrhea. They eliminate even the good bacteria from the digestive system- this is why probiotics are needed.

[EAMom]

My dd hasn't had a diarrhea problem with Azith...we have been haphazzard about giving probiotics.

 

I do think that I myself have had diarrhea on amoxcillin or augmentin but that it was fixed with yougurt or probiotics.

[peglem]

My dd hasn't had a diarrhea problem with Azith...we have been haphazzard about giving probiotics.

Same here.

[P_Mom]

EAMOM lol.....haphazzard here, too, about the probiotics. I was thinking I was the only one. No problems with my kids either....and they have been on Pen VK and Augmentin prophlactically.