How do you get the MD on board?

[Kaviar]

Hi All. I am new to this forum, so forgive me if this question has been covered numerous times before.

 

How do you get your MD on board with prescribing a prophylactic dose of antibiotic?

 

My son is 8 yrs old. He has autism and was diagnosed with PANDAS about a month ago (finally an answer to his cyclical wild OCD and emotional lability and tics!) by a psychiatrist who sent her eval and diagnosis to our pediatrician. The psych suggested to continue giving our son amoxicillin whenever these behaviors arise, as we've had some success with amox. in the past. For our most recent bout with PANDAS, the MD gave a 21-day course of amox and my son only had 2 days of "normalcy" around day 9, but ever since he's not been doing well. I see most people here suggest zithromax as a good antibiotic to use ... and even a prophylactic dose of zithro would be better. But how do you convince a doctor to give it a try? I mean, do you just call and say, "I'm on this online forum of PANDAS parents and everyone there suggests prophylactic zithromax. Please write me a script!" or what?

[ziva]

Hi Kaviar~

 

We love our ped. and have a good relationship with her, but we still have not been able to get her on board with any type of prophalactic abx. Actually not just proph. abx., but we just even to try a longer dose (20-30days) when the symptoms ramped up to see if that would help.

She suggested IVIG, but was not sure how to help us with that at this time. I have been printing out some suggested info. from this board. There have been some really great links to articles that seem like they would help sway in favor of the abx.

I'm sure someone will chime in with those links.

 

So since we were not able to get the abx. from our ped, we have been consulting with Dr.T (ped. neurologist), who has recommended the proph. abx. for my two PANDAS children. It was azith for my DS7, and augm. for my DD6.

Our ped. is aware that he has been prescribing abx. This is all pretty new to us as well, but I am hoping that when she sees how well they do on the abx. that she will come around.

 

I know what you mean about "I'm in this online forum for PANDAS and this is what they say". I have said that to every Dr. we've seen so far, and they always look at me like I'm crazy

 

Hollis

[kimballot]

THis is the abstract from the study that showed that prophylactic penicillin AND prophylactic azith were both effective in reducing the frequency of PANDAS exacerbations. http://www.biologicalpsychiatryjournal.com/article/S0006-3223(04)01377-0/abstract

[dcmom]

Many families have found it imperative to have a doc experienced in treating pandas. Meaning possible traveling a far distance, paying out of pocket, etc, etc.

[Kaviar]

Thank you for the replies and the link (though I can't get it to work ... will keep trying).

 

We live in Southeast PA (oh, about an hour south of Philly), so yeah it's not very easy to make the trek up to the PANDAS specialist we found. Did I mention we have 3 kids altogether (DS8, DS6, DD4)?

[kimballot]

Thank you for the replies and the link (though I can't get it to work ... will keep trying).

 

We live in Southeast PA (oh, about an hour south of Philly), so yeah it's not very easy to make the trek up to the PANDAS specialist we found. Did I mention we have 3 kids altogether (DS8, DS6, DD4)?

 

If you click on the link it should work... the forum format shortens it so you really cannot cut and paste it from my post.

[dcmom]

Kaviar-

 

There is a great pandas- treating neurologist in Bethesda, MD- just outside of DC. That shouldn't be too far. We used to live in DC, but now live in NJ and make the 4 hour drive to MD regularly with 2 pandas kids. It is NOT easy- but believe me- you may end up wasting lots of time and money with local docs.

 

There may be a time when you need more than abx, and it is best to have a doc on board willing to go the distance with your child.

 

Just my opinion FWIW.

 

Best to you....

[kimballot]

Kaviar-

 

There is a great pandas- treating neurologist in Bethesda, MD- just outside of DC. That shouldn't be too far. We used to live in DC, but now live in NJ and make the 4 hour drive to MD regularly with 2 pandas kids. It is NOT easy- but believe me- you may end up wasting lots of time and money with local docs.

 

There may be a time when you need more than abx, and it is best to have a doc on board willing to go the distance with your child.

 

Just my opinion FWIW.

 

Best to you....

 

I would second that a PANDAS doc is important if you can swing it. Ours works in collaboration with our pediatrician. The pediatrician is much more willing to order ABX when he hears that the PANDAS doc is in agreement. I did not think we could afford the time or money for a PANDAS doc but once we got desperate enough we found a way to swing it and it was the best decision for us.

[lmkmip67]

I complained at first about the drive to see a PANDAS specialist for mys on, but the 2 1/2 drive is really nothing now. We live near Boston and drive almost to NY to see Dr. B in CT. It is worth it to go to someone that knows about PANDAS and can treat it from experience. I would drive 5 hours if I had to. I would do what I needed to do, but I think if you have a few hours drive to get to someone who treats it on a regular basis, it is worth it.

[thereishope]

If your son was on amoxicillin for 21 days and you only saw any glimmer of improvement for two days of that, I would suggest trying to get a treatment dose of something else before going to a prophylactic dose.

 

As I assume you have read, amoxillin has a high failure rate of erradicating strep.I would start by providing info backing up that the original strep infection (do you have a documented strep infection?) was never cleared in the first place. If you want Azith, then provide articles and state you want a script for Azith. Otherwise, some do also see improvement on Omnicef and Augmentin as well.

 

You state you are in PA...others in PA...do you find docs prefer to avoid Azith in that area and opt for something else due to the possibility of a Zith resistent strain of strep?

 

Here are some articles on the failure rate of amoxicillin

 

Amoxicillin Failure in Sterp

http://www.entrepreneur.com/tradejournals/article/169459644.html

 

Group A Streptococcus and its antibiotic resistance

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2640020/

 

Also, if you cannot travel to a specialist, you can search for a different doctor in your area, try an ENT, immunologist, etc.

Edited July 1, 2011 by Vickie

[Kaviar]

Thank you, Vickie! My son had strep throat 3 times this past winter ... was first given Omnicef, but he tested positive again 4 weeks later, so they put him on Amox. Then again with amox. about 6 weeks after that be/c his symptoms reappeared (though he tested negative for strep) and the pediatrician suspected PANDAS.

 

At this point, I'm thinking he might have a perianal infection going on ... but my son has had GI issues his entire life, so God only knows what's up with his poor lil bum. *sigh*

 

I appreciate the urging to continue seeking a PANDAS specialist. I'll look into the one in MD (maybe he'll even accept our insurance! ).

[Dedee]

I don't mean to sound like a broken record with the others but...... I have three children also and we drive 13 hours to our PANDAS specialist. This after too much wasted time, energy, money, and emotions thinking I would be able to work with someone in this area. Let me tell you 13 hrs in a car with my PANDAS daughter and my two boys is no cake walk. But it has gotten us our end result, which is our diagnosis, antibiotics, and recommendation for IVIG. After that we were able to find someone local who deals mostly with autism(but understands PANDAS) and does IVIG in her office. She is working in collaboration with our specialist. I wish you the best of luck. You are fortunate that you live fairly close to a very good PANDAS specialist.

 

Dedee

[butterflymom]

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Edited October 8, 2015 by tampicc

[butterflymom]

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Edited October 8, 2015 by tampicc