suggestions for antibiotic use

[cdnmom]

I am from Canada and as many of you know, it is extrememly difficult to get any medical support out our way for Pandas. My DS8 has not been seen by a Pandas specialist yet (we are in the process of getting a doc over the border), so we have not been given any "formal" diagnosis of Pandas. When he was 6 he tested positive for strep, 6 weeks later began eye ticcing. He was put on antibiotics twice and tics disappeared for 1 yr. Since this past Feb he has had 3 infections (no pos strep infection), each of which came about 2 days after severe new tics (eye rolling, head jerking, vocal inhalations, etc).....in fact, by the third onset of tics, I told my husband I had a feeling he was going to wake up sick and sure enough, he did.

 

This is when my naturopath, and I, began to travel down the Pandas road. I was lucky enough to get 14 days of zithromax from family doc (who has never heard of Pandas), and was reluctant to give me the antibiotic but gave in to my pleading. Since starting the antibiotic, his tics have almost completely come to a halt.

 

My doc gave me another 5 day repeat (which I have not filled yet). I am not sure if I should give him the last 5 days of zithromax and was hoping to get some suggestions here. I am not a Pandas expert, in fact, I am in the initial phases of dealing with whatever it is that is going on with him. Nor do I have any doc who can guide me in any way, so it all boils down to me making a decision on my own.

 

I just dont know if I should continue with the repeat of abx. Am I harming him by giving it to him for an additional 5-6 days? Any information would help. Today is the last day of the intial 14 day course of abx.

 

Diane

Edited June 8, 2012 by ash

[Bill]

I am afraid I do not have a good recommendation on whether to give the next 5 days of ABX or not. Sounds like you have had good results with ABX several times now. Have you document or recorded your son before/during/after ABX? Even if your doctor has never heard of PANDAS - it should be hard for him to ignore such evidence (though don't be too surprised if they do!).

 

Along with the videos/documentation - hand him a copy of Swedo's original research or a number of later articles on this topic. The top thread - Healpful Threads for PANDAS contains a number of useful links. Sometimes we have to educate the doctor.

 

Sorry that I can not offer more help.

 

bill

[rowingmom]

Unfortunately Canadian doctors are not permitted to Rx long term Abx - they risk having their licence pulled by their provincial College of Physicians and Surgeons. For that reason we seek treatment for lyme/bartonella/PANS across the border. You may be able to educate your doctor, but his hands are tied when it comes to abx.

Edited June 8, 2012 by rowingmom

[cdnmom]

I did tell the family doc that DS's tics had initially stopped a year ago after 2 rounds of antibiotics but she was not convinced. She took a throat swab this time (couple of weeks ago) which came back negative for strep and for that reason was reluctant to give him the antibiotics. I think what convinced her was all the information I brought with me regarding pandas, available to me through this wonderful forum, along with my persistence....but she gave me only a 5 day course. Once that ran out, I went back to her and told her that his tics were almost gone.....she did document that in her file, then gave me another 5 day course with a repeat but warned me of the side effects. She did not advise me to give my son the 2nd or 3rd round of ABX, but was merely being receptive to my thoughts, ideas and research.

 

So I guess I am a little afraid to make these types of decisions on my own without the guidance of a knowledgeable doctor, but I also felt the need to act somewhat quickly while DS was going through his episode. I did not want to miss that "window of opportunity" if it meant the possibility that the ABX might send him into remission, as I believe it did last year.

 

I thought this forum was the best place for answers....given my situation. I have read that many folks try long term antibiotics but they usually have somewhat of a diagnosis.....I, unfortunately do not. But, based on my son's history, I believe there is a good possibility he may be a Pandas child. I am the only person who can treat him right now, with what I have available, just not sure what treatment is best for him.

 

Thanks for your thoughts.

Diane

[ptcgirl]

Can't really answer too much since I'm not a doctor, but I do know that my dd has been on Zithromax a ton and an additional 5 days is nothing compared to the months she was on it to treat Lyme. If it were me, I would give him the additional 5 days, but that is just based on our own experience and what I would do. As mentioned in other posts, please make sure to document everything. It will help you down the road. Keeping a daily journal really helps too. Good luck!

[Kiera]

I don't think it's a big deal if you give the extra 5 days of zith, many pandas kids are on zith long term, or some other antibiotic for years even. In the past, how long a dose of antibiotic cleared the tics? For pandas kids they do recommend an initial 30day course as they usually need a longer dose than your typical kid to clear the infection. It may just delay the tics returning by another 5days and then you'll know it's probably pandas you're dealing with!

[bigmighty]

If you think the additional antibiotics are needed to keep the tics at bay, by all means give the additional five days. Not a big deal. If you think they are not absolutely necessary and your child will be okay without them, you might want to hang onto the five days worth for the future. Something for an absolute emergency if you cannot get a doc to prescribe and you know what's in store if you don't treat.

[cdnmom]

He was on 10 days of penicillin when he tested pos for strep a year ago....then tics began 6 weeks later, then on cefprozil (can't remember how long) but was either 5 or 10 days....no longer. On the 3rd day of cefprozil, the tics completely stopped for 5 days, then started up again but less severe and continued for 2 months, then disappeared for almost 1 year.

 

My husband got the extra 5 days today, does anyone know how long they are good for? A note on the bottle says to discard any unused portion after 10 days....just wondering if I have the option of holding onto it for future use at this point.

[Kiera]

I'm presuming it's in liquid form, then you have to use it. A pharmacist told me it's still active after the 10days but begins to loose a bit of potency every day thereafter.

[bigmighty]

When DS was younger and on liquid meds, we always told the pharm that we were going out of town and were getting prescrip now to use later. They would give the powder in one bottle and water in another bottle and include mixing instructions. Since yours is already mixed, you'll need to use it now.

[tpotter]

I am from Canada and as many of you know, it is extrememly difficult to get any medical support out our way for Pandas. My DS8 has not been seen by a Pandas specialist yet (we are in the process of getting a doc over the border), so we have not been given any "formal" diagnosis of Pandas. When he was 6 he tested positive for strep, 6 weeks later began eye ticcing. He was put on antibiotics twice and tics disappeared for 1 yr. Since this past Feb he has had 3 infections (no pos strep infection), each of which came about 2 days after severe new tics (eye rolling, head jerking, vocal inhalations, etc).....in fact, by the third onset of tics, I told my husband I had a feeling he was going to wake up sick and sure enough, he did.

 

This is when my naturopath, and I, began to travel down the Pandas road. I was lucky enough to get 14 days of zithromax from family doc (who has never heard of Pandas), and was reluctant to give me the antibiotic but gave in to my pleading. Since starting the antibiotic, his tics have almost completely come to a halt.

 

My doc gave me another 5 day repeat (which I have not filled yet). I am not sure if I should give him the last 5 days of zithromax and was hoping to get some suggestions here. I am not a Pandas expert, in fact, I am in the initial phases of dealing with whatever it is that is going on with him. Nor do I have any doc who can guide me in any way, so it all boils down to me making a decision on my own.

 

I just dont know if I should continue with the repeat of abx. Am I harming him by giving it to him for an additional 5-6 days? Any information would help. Today is the last day of the intial 14 day course of abx.

 

Diane

 

 

Since it truly appears that this is something related to infection, I would highly recommend that you see if you can go across the border for tx (I would recommend Dr. B. or D. L, and there may be others now.) Although you seem to have it at bay, PANS only tends to get worse with time, and you want to have a PANS expert who knows what to do, and can do it, if necessary. It sounds like your pediatrician is quite receptive and open minded, which is wonderful, but based on rowingmom's response, it sounds like the doc's hands are tied when it comes to treatment. That's when things could become critical fast, and all the PANS specialists are backed up several months for appointments. I'd get in there now while it's not critical.

 

Here's another thought. Will your child qualify for the NIMH study? Have you called? If she's accepted, everything is paid for. Here's the website: http://clinicaltrials.gov/ct2/show/NCT01281969

[minimaxwell]

I agree with tpotter. you can also try getting into dr. Tanya Murphy who has a study in florida. Can't find the link to the study but i have posted it before. they provide a travel stipend and cover medical costs. Good luck,keep us updated. Also my vote is to give the abx.

 

Tanya Murphy, M.D.

Professor

Director, Rothman Center for Pediatric Neuropsychiatry

 

Contact Information Departments of Pediatrics and Psychiatry

University of South Florida

Phone: 727-767-8230

Fax: 727-767-7786

 

Mailing Address:

Department of Pediatrics

University of South Florida

800 6th Street South

4th Floor, Box 7523

St. Petersburg, FL 33701

 

Email: tmurphy@health.usf.edu Education M.D., University of Florida