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I have no idea what to do next. The docs we see, who seem experienced in pandas, have said they dont recommend long term abx, or ivig for my daughter. What other treatment options are there? I am lost, and she is still far from her old self, even though it has been a year since strep. Do I just hope for natural recovery? Does anyone have any ideas?

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I have no idea what to do next. The docs we see, who seem experienced in pandas, have said they dont recommend long term abx, or ivig for my daughter. What other treatment options are there? I am lost, and she is still far from her old self, even though it has been a year since strep. Do I just hope for natural recovery? Does anyone have any ideas?

Change doctors. What is the rational for withholding treatment?

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I know some don't want to say who their doctor is, but the leading PANDAS doctors who know what they are talking about are Dr K, Dr Latimer, Dr T, and Dr B.

 

Where do you live?

 

Until you speak to them or get an appt, if it's your pediatrician saying this, call around and find another one. How have they ruled out another strep infection? What have they done so far? Perhaps there is something we can suggest to you so you know what to say when finding a new pediatrician.

 

Have you already done strep tests on everyone else in your house?

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Will plagiarize NancyD to be of help to you. If she were online, she would repost this for you.

 

In MA: Robert Fuhlbrigge, MD at Children's Hospital Boston and Elizabeth TePas, MD at MGH for Children at Newton-Wellesley Hospital both order IVIg for PANDAS.

 

Michael

 

(thanks,Nancy)

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dandd,

I think you are seeing someone who is versed in PANDAS, correct? I think I'm familiar with your dd's symptoms and she had strep a year ago? not since then? what have you been doing during the past year? what has helped, what has not? would you say your girl is better than she was?

 

Could you tell us what your doctors opinions are and why he said no to abx, etc.? what does he recommend?

 

 

thanks

Faith

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I have no idea what to do next. The docs we see, who seem experienced in pandas, have said they dont recommend long term abx, or ivig for my daughter. What other treatment options are there? I am lost, and she is still far from her old self, even though it has been a year since strep. Do I just hope for natural recovery? Does anyone have any ideas?

 

Sounds like our pediatrician. He know what PANDAS is. He's even treated someone with a clear cut first time exacerbation. But he doesn't know enough to help someone like my son, who is 10 and has likely been dealing with this for 5 or more years. He doesn't know enough to feel comfortable prescribing abx, especially for a child that hasn't presented with classic strep symptoms in over a year. He had never heard of intracellular strep. When our titers came back in the normal range he basically decided I was set on something that just wasn't so, even though he did admit that he seemed to fit the clinical picture minus the strep titers. After he refused to prescribe prophylactic abx because he didn't see how abx for a child that didn't actually have strep would help. I gave him papers and websites and he agreed to learn more about it and also wanted to call a friend that is an infectious diseases doctor.

 

He seemed to think that a child would be totally back to normal between exacerbations. I tried to explain that most kids aren't. Mine certainly wasn't. And eventually their systems are so messed up that lots of things become triggers. He wasn't so sure about all that.

 

After seeing him several more times and him not reading what I gave him and not knowing anymore than the last time I left him, I decided I had to find someone else. the kicker for me was when he pulled up something by Dr. Kurlan. He also quoted the NIMH website saying prophylactic abx weren't recommended. The more I tried to give him information about it, the more he seemed to dig into his position. I plan to have the Cam Kinase II test done and he agreed to let me use the lab to have the blood drawn.

 

I e-mailed one specialist who agreed that my son fit the diagnostic criteria. Then I did a phone consult with another one of the specialists, who also agreed that my son definitely fit the profile and prescribed a new abx for us. He's been on it just over a month & the difference has been amazing.

 

I spent a lot of time going back and forth about whether to contact a specialist because of the cost and my son was doing pretty OK. But in February he had his worst exacerbation yet and for the first time I was worried about him totally losing it. Emotionally he was a wreck. I realized that I didn't really know that it would always be manageable and that it was likely that each exacerbation would continue to get worse if we didn't do something. I'm glad I did because he is doing better now than he has in years. And I know who to contact if it gets bad again.

 

You have to be the advocate for your child. The doctor just doesn't have the same priorities you do. It isn't his child, though I'm sure he cares. But he has to think about not getting sued, what the insurance will pay, all the other patients he has to care for, etc. You just have to think about what you can do for your son with the resources you have.

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thanks everyone,,,,, to initially treat the strep we did 1wk augmentin. Then saw neuro (hated him) did prenisone (horrible) and 1mo of amox. Then saw new doc ( geller) he gave us diagnosis, started celexa, later added risperdal. better for a couple months then fell apart, ended up inpatient. I talked them into letting us go home, it was horible. then tried lamotrigine, seroquel, and augmentin. every time she goes off augmentin she goes downhill steadily. but she got serious stomach problems dispite probiotics adult strength. trying to get app. with fuhlebrigge. maybe he will help.

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Wow - is that Dan Geller at Mass General of "Saving Sammy" fame? And he wouldn't prescribe longer-term, higher-dose augmentin? That's shocking, given his support for Beth Maloney's work and the PANDAS Foundation.

 

Such a shame that the augmentin causes your ds so much stomach discomfort. Maybe new doc will prescribe high-dose, long-term zithro or another useful abx?

 

 

thanks everyone,,,,, to initially treat the strep we did 1wk augmentin. Then saw neuro (hated him) did prenisone (horrible) and 1mo of amox. Then saw new doc ( geller) he gave us diagnosis, started celexa, later added risperdal. better for a couple months then fell apart, ended up inpatient. I talked them into letting us go home, it was horible. then tried lamotrigine, seroquel, and augmentin. every time she goes off augmentin she goes downhill steadily. but she got serious stomach problems dispite probiotics adult strength. trying to get app. with fuhlebrigge. maybe he will help.
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thanks everyone,,,,, to initially treat the strep we did 1wk augmentin. Then saw neuro (hated him) did prenisone (horrible) and 1mo of amox. Then saw new doc ( geller) he gave us diagnosis, started celexa, later added risperdal. better for a couple months then fell apart, ended up inpatient. I talked them into letting us go home, it was horible. then tried lamotrigine, seroquel, and augmentin. every time she goes off augmentin she goes downhill steadily. but she got serious stomach problems dispite probiotics adult strength. trying to get app. with fuhlebrigge. maybe he will help.

 

Just FYI, with Fuhlbrigge, we liked him, but he would only prescribe abx as pure prophylaxis against strep (pen vk). In our case it was not nearly enough to stop current PANDAS symptoms and we went back on zith, then 2000mg/day of augmentin XR (prior Rx from a different doctor). I don't know if he is different with others, perhaps cases that appear more severe than ours he will dose higher.

 

I, too, would probably recommend a phone consult Dr. K or Dr. T.

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Unfortunatley, amoxicillin being successful in PANDAS kids is rare. The most successful meds are Augmentin and Zithromax. So, if your child had strep at the beginning of this, there a chance that it didn't completely clear. I really suggest getting a strep test elsewhere that is local (if your ped won't do it) while you wait for an appt a few month out. If your child still has strep, you can't let it simmer and worsen. You can get an appt with another ped probably within a week and you usually don't have to switch all records for an appt unless it is an appt that you would want immunization shots at.

 

As for SSRI's, they're tricky. Some PANDAS kids do not react well to SSRI's, but the doctor sees the failure of the SSRI as a reason to just increase the SSRI dosage, add another, or change it. Sometimes if the child initially improves on the SSRI but then declines, the parent needs to look at the timeline. Could the improvemnt been because of antibiotics and not the SSRI and now the SSRI is causing more harm than good? It gets very complicated. I am not saying to take your child off of any meds, but just informing you.

 

To quote the PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006].

 

With Augmentin, next time you can request Augmentin XR. That may be easier on the tummy.

 

 

 

 

 

thanks everyone,,,,, to initially treat the strep we did 1wk augmentin. Then saw neuro (hated him) did prenisone (horrible) and 1mo of amox. Then saw new doc ( geller) he gave us diagnosis, started celexa, later added risperdal. better for a couple months then fell apart, ended up inpatient. I talked them into letting us go home, it was horible. then tried lamotrigine, seroquel, and augmentin. every time she goes off augmentin she goes downhill steadily. but she got serious stomach problems dispite probiotics adult strength. trying to get app. with fuhlebrigge. maybe he will help.
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Hi DanDD

 

We are also in the Boston area working with a Neurologist and finding treatment difficult. He is well versed in PANDAS but does not believe in abx for preventive reasons. He will not prescribe unless there is a positive strep test. He said he used to provided abx 5-6 years ago but not anymore. He said there is no evidence that the children will be helped. He said even with all these treatments the kids symptoms will continue to reoccur. I had argued with him and we agree to disagree. I even mentioned some of the books that I have taken out of the library have called for abx to used as prevention for step. Isn't that the normal protocol for treating PANDAS. He said it used to be. At his same hospital there is a nurse there who was in a online article about her son and strep and that he will be on abx till he is 18; go figure. I almost feel discriminated against. He also said a lot of these doctors who are providing phone consults, IVIG, abx etc. are making money off of parents. I found that to be a pretty unbelievable statement. He said those methods do not hold any guarantee or cure. I had also said doing nothing does not help either as ds repeats his episodes every couple of months and we pray it does not get real bad. The stress !!! His protocol is psych drugs and counseling. I don't think counseling is useful at his age and he didn't not do well with the tenex, yet they wil happily go to the next drug. Needless to say we were thinking about Dr.Gellar. Like someone mentioned earlier we are just not a priority and I feel like ds is slipping through the cracks. I find this puzzling for being in the Boston area.

 

Again, I'm sorry you sound like you are feeling frustrated as am I. Please let me know if you have any luck around here. Wishing you all the best.

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