emergency treatment

[laure]

Has anyone tried treating on their own? Just wondering because it is taking forever for us to find a doctor nearby, or get an appointment with a PANDAS knowledgeable doctor anywhere within a day's drive...my 9 year old daughter had anti d naseB titres of 772 with overnight OCD. It was very scary, suicidal talk, etc. Our doctor prescribed amoxicillin for 10 days which really helped the OCD symptoms a great deal, but she is not out of the woods by any stretch. it is easy to get augmentin etc. online, and there is plenty of dosage info online as well...as a stop gap until we get help, would this be crazy? Because I'm not sure she can go to school in this state, and we absolutely cannot risk reinfection.

[momaine]

Has anyone tried treating on their own? Just wondering because it is taking forever for us to find a doctor nearby, or get an appointment with a PANDAS knowledgeable doctor anywhere within a day's drive...my 9 year old daughter had anti d naseB titres of 772 with overnight OCD. It was very scary, suicidal talk, etc. Our doctor prescribed amoxicillin for 10 days which really helped the OCD symptoms a great deal, but she is not out of the woods by any stretch. it is easy to get augmentin etc. online, and there is plenty of dosage info online as well...as a stop gap until we get help, would this be crazy? Because I'm not sure she can go to school in this state, and we absolutely cannot risk reinfection.

Well, I'd risk trying it while I waited for an apt. if I were desperate but I wouldn't go this alone becasue its far too difficult. But you need a prescription to get antibiotics unless you get them out of country. Not sure how you'd do that. I'd probably start by begging my pediatrician or general practitioner for a month of augmentin or azithromycin, telling them how much the amox. helped and bring them info from this site and asking them what can it hurt?? Best of luck. It'd be worth a two day drive if you can get someone on your team.

[laure]

Has anyone tried treating on their own? Just wondering because it is taking forever for us to find a doctor nearby, or get an appointment with a PANDAS knowledgeable doctor anywhere within a day's drive...my 9 year old daughter had anti d naseB titres of 772 with overnight OCD. It was very scary, suicidal talk, etc. Our doctor prescribed amoxicillin for 10 days which really helped the OCD symptoms a great deal, but she is not out of the woods by any stretch. it is easy to get augmentin etc. online, and there is plenty of dosage info online as well...as a stop gap until we get help, would this be crazy? Because I'm not sure she can go to school in this state, and we absolutely cannot risk reinfection.

Well, I'd risk trying it while I waited for an apt. if I were desperate but I wouldn't go this alone becasue its far too difficult. But you need a prescription to get antibiotics unless you get them out of country. Not sure how you'd do that. I'd probably start by begging my pediatrician or general practitioner for a month of augmentin or azithromycin, telling them how much the amox. helped and bring them info from this site and asking them what can it hurt?? Best of luck. It'd be worth a two day drive if you can get someone on your team.

 

Thanks for your advice...it is easy actually to order antibiotics online...but I am still actively seeking the services of a real specialist so we can get to all of her needs now...if she needs an SSRI or whatever to help her get over the OCD behaviors, all new since July.

[AmySLP]

Be careful about the online drugs...I saw a news episode where they put them side by side with the original and found that although they looked the same, even the pharmacist couldn't tell the difference visually-they were not. Either they contained no active ingredients or were reduced. Can you print out some info for your doctor to at least get some meds until you can get an appt-you can also do phone consults with several of the specialists and they can prescribe meds anywhere.

 

Good Luck-I hope you're able to find some solution.

 

Amy

[tpotter]

I completely understand where you are coming from, because prior to finding this forum, I was very much in the same boat (even though we had found a PANDAS specialist, he was not "there" for us, and my son went extended periods without tx.) Locally, we had the same problem finding a doctor willing to at least do the basics, and of course, we didn't even know at the time what the basics were, but we knew we desperately needed help.

 

1) Have you looked on the list at the beginning of this forum for doctors. You might find a pediatrician or someone in your area who can help. Where are you from? Maybe another parent can give you a lead.

 

2) I would call 1 pediatrician after the next in your area, tell them your situation, and ask them if they would be willing to follow the recommendations of a PANDAS specialist and/or would they like to learn even more. In which case, you could send them all the information you have (I have a bunch of information for doctors grouped together in my email to send them when necessary (studies, names of doctors treating, etc.) I think it would help tremendously if you brought that literature with you, and also brought up the recent meeting at NIH with all the doctors (both PANDAS believers and non-believers.)

 

3) I would also be very careful about getting meds online. You don't really know for sure what's in them.

 

4) SSRI's have been shown to sometimes cause worse problems in PANDAS kids. If the child truly has PANDAS, they don't tend to respond to SSRI's like non-PANDAS kids with the same OCD, ADD, etc. My son became extremely violent on them. Read Dr. Tanya Murphy's article.

 

Good luck.

[wornoutmom]

I totally understand this desperation. Last fall my son was falling apart and the only improvement he would show was on a short course of abx for a sinus infection, and would tank as soon as he was off of them. I felt like a crazy woman trying to get him more drugs. I begged and pleaded with our pediatrician and our psychiatrist. You would have thought I was asking for crack. So, yes, my husband and I ordered antibiotics online from Canada. Omnicef to be specific. I was nervous to use them, in case something went wrong - how to explain to the docs how I was giving prescription drugs to my child without a prescription...I can tell you the pills looked different from the ones we were used to getting and were manufactured in India. We did not end up using them for my son, as a few weeks after they arrived we got him into an ENT, who we hadn't begged from before (new crack dealer) and gave us 60 days worth to clear his sinus infection. So we filled the American, legit script. Months down the road, we became concerned that the other members of the family might be harboring strep or myco p or some other nasty that kept our son in a state of exacerbation. We could not get a doc to test the whole family ( we asked 4 different ones!). So my hubby and I decided to break out the on-line Omnicef and treat ourselves, just in case. No ill effects. I can't speak for dh, but I actually started to feel better afterwards. So while I can't tell you what to do, I can for certain understand your considering it. The endless fight for treatment finally ended when we hooked up with a long-distance PANDAS expert, and an in-state neurologist who prescribed IVIG. If you would like names, please feel free to PM me.

[susie]

I totally understand this desperation. Last fall my son was falling apart and the only improvement he would show was on a short course of abx for a sinus infection, and would tank as soon as he was off of them. I felt like a crazy woman trying to get him more drugs. I begged and pleaded with our pediatrician and our psychiatrist. You would have thought I was asking for crack. So, yes, my husband and I ordered antibiotics online from Canada. Omnicef to be specific. I was nervous to use them, in case something went wrong - how to explain to the docs how I was giving prescription drugs to my child without a prescription...I can tell you the pills looked different from the ones we were used to getting and were manufactured in India. We did not end up using them for my son, as a few weeks after they arrived we got him into an ENT, who we hadn't begged from before (new crack dealer) and gave us 60 days worth to clear his sinus infection. So we filled the American, legit script. Months down the road, we became concerned that the other members of the family might be harboring strep or myco p or some other nasty that kept our son in a state of exacerbation. We could not get a doc to test the whole family ( we asked 4 different ones!). So my hubby and I decided to break out the on-line Omnicef and treat ourselves, just in case. No ill effects. I can't speak for dh, but I actually started to feel better afterwards. So while I can't tell you what to do, I can for certain understand your considering it. The endless fight for treatment finally ended when we hooked up with a long-distance PANDAS expert, and an in-state neurologist who prescribed IVIG. If you would like names, please feel free to PM me.

 

Those doctors should be ashamed of themselves. They pass out psych. drugs like candy, but won't listen to a parent that antibiotics are helping "psych" symptoms. What is going on? it's insane.

I would order out of the country if I had to. I'd be afraid, but I would probably do it too if I had no other choice.