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Tempted to try Rx on my own w/o Dr. guidance


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I am tempted to put my son on a course of ABx without Dr. guidance. I'm scared to do it but think it may be worth a try to see if it helps. Living in the Middle East I can get virtually any ABx over counter without a prescription. Also living where I do I have absolutely no Dr. support even though I have taken sons SC/PANDAS diagnosis from UK neuro into their offices. Their reaction is that the neuro is wrong b/c he considers this a third world country ( which between you and I very much is) and in their eyes b/c it is not, this is the wrong diagnosis (still trying to figure the logic on that one).

Anyway what has got me started on this is basically reading all the posts here. I wrote before that my son has been diagnosed with Sydenhams chorea but instead of improvement has lately been getting much worse. More tics, emotionally fragile, ADHD type behaviours etc. This has been going on without any remission for about 5/6 months now. I just don't want it to get worse. He is currently on 250 mg PEnicillin V BID. So I am thinking of self-medicating him with ABx just to see if it helps clear or improve symptoms.I don't really know which ABx would be best or what dosage or for what length of time ( 8 year old boy, about 62lbs). It may also help in seeing if his SC is PANDAS as there is some debate about this.

We are moving to States at end of Feb. and I could wait but by time we get settled find a good Dr. it may be months away.

Am I absolutely out of my mind considering doing this without guidance. I know ABx is not a medication that could kill him I just don't want to do something that in some kind of way make things worse.

 

Any advice would be helpful.

 

Thx Ros

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I think you have nothing to lose with trying an antibiotic full strength for a month till you get to the states. I would consider the two found most often on this board as a good place to start. Augmentin XR twice daily if no penicillin allergy (and if he can swallow large pills) or Azythromycin (also known as Zithromax) 500mg daily (one pill daily). I would also call now to make an appointment with a physician in the states that works with Pandas that you could seen ASAP once the plane lands. You are not crazy.

 

Ellie

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I think you have nothing to lose with trying an antibiotic full strength for a month till you get to the states. I would consider the two found most often on this board as a good place to start. Augmentin XR twice daily if no penicillin allergy (and if he can swallow large pills) or Azythromycin (also known as Zithromax) 500mg daily (one pill daily). I would also call now to make an appointment with a physician in the states that works with Pandas that you could seen ASAP once the plane lands. You are not crazy.

 

Ellie

 

I think you are right. When this all kicked off and Tom had his MRI done it showed he had quite a bad sinus infection which he didn't really complain much about. May well be he has another, especially since he is getting alot of headaches lately that I have thought have been due to his head and eye tics. I know it won't to any real harm doing this I think I am just scared of doing the wrong thing. Thanks for the support.

 

Ros

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I have to confess that after I was diagnosed with infection-triggered autoimmune neuropsych syndrome, well before PANDAS had been defined and before I could get anyone to prescribe antibiotics consistently even when I wasn't "sick" enough to justify them, I did all kinds of things to get my hands on them. I used to travel to Europe a lot, and I would go around the world while doing so (no extra cost when traveling business class) just to stop in the Bangkok airport and stock up on large quantities of antibiotics with no prescription at their airport pharmacy. I would stock up in Mexico while on vacation. I would go to high-end "make you perfect" cosmetic dermatologists and complain of acne ("I know it's not on my face, but believe me it gets bad unless I have antibiotic X at dose Y....") and get them to prescribe for me. Whatever it took. It's funny to me that now, 20 years later, I can just call up my GP or ped and tell them what's going on and get antibiotics/steroids for me or my kids when I need them without feeling like some kind of a criminal.

 

All that having been said, I did educate myself on possible side effects and kept a close eye on myself. I realized that it wasn't optimal to do what I was doing without medical supervision, but it was that or allow my whole life to go down the tubes at that point, so I did it anyway.

 

 

 

 

I am tempted to put my son on a course of ABx without Dr. guidance. I'm scared to do it but think it may be worth a try to see if it helps. Living in the Middle East I can get virtually any ABx over counter without a prescription. Also living where I do I have absolutely no Dr. support even though I have taken sons SC/PANDAS diagnosis from UK neuro into their offices. Their reaction is that the neuro is wrong b/c he considers this a third world country ( which between you and I very much is) and in their eyes b/c it is not, this is the wrong diagnosis (still trying to figure the logic on that one).

Anyway what has got me started on this is basically reading all the posts here. I wrote before that my son has been diagnosed with Sydenhams chorea but instead of improvement has lately been getting much worse. More tics, emotionally fragile, ADHD type behaviours etc. This has been going on without any remission for about 5/6 months now. I just don't want it to get worse. He is currently on 250 mg PEnicillin V BID. So I am thinking of self-medicating him with ABx just to see if it helps clear or improve symptoms.I don't really know which ABx would be best or what dosage or for what length of time ( 8 year old boy, about 62lbs). It may also help in seeing if his SC is PANDAS as there is some debate about this.

We are moving to States at end of Feb. and I could wait but by time we get settled find a good Dr. it may be months away.

Am I absolutely out of my mind considering doing this without guidance. I know ABx is not a medication that could kill him I just don't want to do something that in some kind of way make things worse.

 

Any advice would be helpful.

 

Thx Ros

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I think you have nothing to lose with trying an antibiotic full strength for a month till you get to the states. I would consider the two found most often on this board as a good place to start. Augmentin XR twice daily if no penicillin allergy (and if he can swallow large pills) or Azythromycin (also known as Zithromax) 500mg daily (one pill daily). I would also call now to make an appointment with a physician in the states that works with Pandas that you could seen ASAP once the plane lands. You are not crazy.

 

Ellie

 

I think you are right. When this all kicked off and Tom had his MRI done it showed he had quite a bad sinus infection which he didn't really complain much about. May well be he has another, especially since he is getting alot of headaches lately that I have thought have been due to his head and eye tics. I know it won't to any real harm doing this I think I am just scared of doing the wrong thing. Thanks for the support.

 

Ros

 

For what it's worth, I agree with Ellie. Frankly, many of us State-side (myself included) are basically self-prescribing abx in the beginning of our PANDAS experience, too, even though the legalities here dictate that we convince someone with an "MD" after their name to actually write the script! Until/unless you can get to a PANDAs expert, most regular pediatricians don't know much about PANDAS and don't know much about medication protocols with respect to the PANDAs either, so they're relying on folks like us to tell them what is "standard" and what we want to try for our kids.

 

I don't think you have anything to lose, and potentially an awful lot to gain. You're not going to create a "Superbug" with one month of abx, and you just may put your son on the road to recovery! Good luck!

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I agree with all of the above sentiments. Especially that it is much safer than psych meds! If you see improvement on the abx, then you have one more piece of the puzzle to present to a doctor here in the States.

 

If you can get some probiotics, then use them to minimize the side effects of the abx.

 

~Karen

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Some suggestions...

 

Arrange for a phone consult with Dr. Trifiletti. Once complete your child is "officially" a patient. He can guide you through what meds to try/use until you return to the states.

 

 

Our DD1 (Lauren), also gets bad sinus infections. Dr. Bouboulis would be my reccomendation to see as soon as you get stateside. He told us the reason why my daughter was sick sooo much last year (pre full manifestation) was because the strep was hiding in the inflamation of her sinuses and without heavy, long-term steroids along with heavy, long-term abx, the step was never fully erradicated, hence why she would get sick again a few weeks after finishing the wimpy, normal dose of abx that she was off and on again all year long!!! I am theorizing this might be what you are dealing with....good luck to you. I hope this is useful information.

 

Lynn

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