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First Steps and Bay Area Doc referral


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Hello,

 

I wrote a post a few weeks ago about my 8yo son. I appreciate all of the replies that I received and I think I now need to explore PANDAS. He was diagnosed with TS in October 2010. His vocal tics were the worst I've ever seen them. I was so scared for him. Although I barely know anything about PANDAS, it was always at the back of my mind. Now that I'm ready to take on this new challenge, I would love some advice on what I should do first. Our ped referred us to a psychiatrist who specializes in PANDAS. Unfortunately, our referral was refused. Since it looks like we'll have to pay out-of-pocket, I'd love some recommendations on PANDAS doctors in the Bay Area. We live in Oakland, Ca.

 

My question is...if you looked back on your road to help your child, what do you wish you had done first? I've read a few things about antibiotics. This sounds like the first step. I'm reading several opinions on whether a child should be on low doses for a long period of time or high for a shorter period. I'd love to hear any thoughts on that? My child is allergic to amoxocillin. Will this impact any future remedies. Also, are there any other tests we should explore to get a stronger confirmation on whether or not my son has PANDAS. So far, all we've got is a blood test showing his titer levels or ASO levels are high (not sure if I wrote that correctly).

 

Is their a natural approach to helping my child besides antibiotics? What if we don't do anything? Will it get worse? What is the prognosis for kids with PANDAS?

 

Sorry again for all my questions. My anxiety level always goes up when I'm writing these posts and all my fears start pouring out. I really appreciate any help.

 

Thank you,

Nola

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I would love to see any replies to your question. I am also wondering what to do and amoxicillin does not work with my daughter. Good Luck

Would your doctor being willing to give a trial of Augmentin or Zithromax? There is a paper that's been posted here which mentions a high failure rate in Amox for strep...maybe you could show it to your doctor. Hopefully, someone will post the link. You could also try Duricef (Cephalasporin -sp?) -- our ped uses it in her practice for strep.

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I'm sorry. I was in a rush and only messaged some possible doc info.

 

The article about the failure rate of amox is no longer available online :(

 

However, there are studies and cite the failure rate of amox in strep and better alternatives to amoxicillin. Here are a couple...

 

“Meta-analysis of Cephalosporin Versus Penicillin Treatment of Group A Streptococcal Tonsillopharyngitis in Children”

http://pediatrics.aappublications.org/content/113/4/866.abstract

 

Group A Streptococcus and its antibiotic resistance

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

 

 

 

 

I would love to see any replies to your question. I am also wondering what to do and amoxicillin does not work with my daughter. Good Luck

Edited by Vickie
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I would try :

first - Dr. Sean McGhee - pedieatric immunologist. You will need a referral to see him, from your pediatrician or from another doctor. Make appointment through Stanford (Lucielle Packard Children's Hospital). I'd try him first. he can do testing and evaluate. I don't know if he perscribes antibiotics or not. My son is on them, but we get those from another doc. Dr McGhee did IVIG for our son last year. You will want to make sure your insurance will cover it - Stanford must be most expensive place ot get IVIG if you don't have insurance. If you can't get into see him or don't have insurance there - there is a doc teating pandas kids in Petaluma - who I hear has very reasonable rates for ivig - named Dr Sunjay Sweig:

 

Hill Park Medical Center

616 Petaluma Boulevard North, Suite C

Petaluma, CA 94952

Telephone: 707-778-3171

fax: 707-778-6744

Office@HillParkMedicalCenter.com for information and to reach the office staff.

 

And Dr Margo Thienemann. She is a psychiatrist. Located near Stanford - depending on what kind of services you are looking for. She gave us our original diagnosis and ran titer test on my sone, as well as will perscribe antibiotics and other meds if you child's case should warrant that. She has a lot of pandas patients in Bay area.

 

Margo Thienemann MD

maps.google.com

900 Welch Road #207

Palo Alto, CA 94304

(650) 324-3241

 

 

Good luck.

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  • 2 weeks later...

Hi everyone,

 

Thank you so much for the replies and encouraging messages. I definitely need encouragement right now because our son's tics are increasing yet again. He's rolling his eyes so much that he's making himself dizzy! It's so scary. He's also making this squeaking noise (sounds almost like a duck) and gasping (like he's hyperventilating). All scary. So, I tried to get a new referral to Dr. Herbert Schrier (head of psychiatry)at Children's Hospital in Oakland. It was once again turned down because it's under mental health. Why is that? Anyway, has anyone heard of him?

 

 

I really appreciated all the doctor suggestions. I think we'll try Dr. Steven Harris in Redwood City. I'm a little afraid to find out how much this will cost but we'll do our best to get through. It's so frustrating and stressful that all of this is out-of-pocket.

 

Are most of you doing long-term antibiotics? Or small bursts? Which is better? What are the side-effects of long-term use?

 

Lastly, (I don't know if there's an answer but I just want to ask) what is the prognosis for kids with PANDAS? I read that many kids get better in their teens. Is this true? Will it ever get better?

 

Thank you again, everyone!

 

Nola

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Hi Nola,

 

I second Noracal's recommendation for Dr. Margo T. and Dr. Sean McGhee.

 

You can fight your insurance company if they refuse to cover your referrals. Demand a list of qualified providers who specialize in PANDAS that they will COVER. Go down the list and call them, when they say they don't know much about PANDAS you have your weapon to demand they cover Dr. Scherier (etc.). The other option is to pay out of pocket. Lots of folks here do.

 

Many go to LLMD's because 1) they will also look for other sources of infections (like tick borne dz's) 2) they are less fearful of long term antibiotics (vs. reg. docs/peds). Also, PANDAS is in many ways like Lyme (autoimmune component, infection as a source/cause, infection not easily eliminated by typical course of antibiotics, need for multimodal therapy, most "mainstream" docs don't understand treatment etc), so my impression (even if you child doesn't have Lyme) is that these docs seem to "get" PANDAS.

 

As far as your antibiotic question, my dd has been on full-strength Azithromycin (250mg/day for the most part) since she was 7 years old. She's 11 now. So our answer has been long-term high dose antibiotics. We've also done HD IVIG 3x due to exacerbations after viral infections. I think if we had to do things over again, I would have done IVIG sooner. We waited 1.5 years after diagnosis to do our 1st IVIG (I guess to prove to ourself we really needed it). In hindsight, it wasn't that big a deal and I wonder if we had done it sooner, if we'd have less low grade chronic PANDAS issues/baseline change.

 

PS be sure to take videos of your son's tics/movements so you have them to show docs later.

Edited by EAMom
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nola-

 

I have two daughters with pandas. I live on the east coast, so I can't really help you with docs- but I have a few suggestions:

 

- IMHO it is really helpful to have a couple of pandas docs on your team. Most have slightly different protocols, and sometimes it is necessary to have access to them all. Ideally a neurologist and an immunologist would be great, and if there is ocd present a psychiatrist (who has pandas experience) and a psychologist are also necessary.

 

- I would suggest a thorough battery of tests by the immunologist and neurologist to rule out other possibilities. PANDAS is a clinical diagnosis, so ruling out other causes of your child's symptoms is crucial.

 

- Many parents her will tell you to be very aggressive in looking for chronic infection. In my opinion the jury is still out on this. We haven't found chronic infection to be an issue in our kids, the theory of pandas is autoimmunity, triggered by infection. However, you can do your own research, listen to other parents, and decide for yourself.

 

- I believe in a fairly aggressive course of treatment for pandas which would look like this: 10 days of clindamycin, 30 days of zithromax or augmentin at treatment dosages, after the first month of antibiotics a trial of a month long tapering steroid burst should be considered (while remaining on abx). Depending on your results up to this point, you may want to go in different directions. If there is NO movement of symptoms, consult with the doc on the confidence of the pandas diagnosis- consider testing for chronic underlying infection and/or move toward more serious pandas treatments. If these treatments have brought your child back to about 90%, stay on this course, changing very little, keeping things calm, and give it time. If these treatments have improved your child, yet not enough, then quickly move toward IVIG or plasma pheresis (we have also used IV steroids- this is not done very frequently- but in my opinion is a great first option of the more invasive treatments).

 

Basically with pandas, the theory is: you need to address the infection, and then you need to shut down the autoimmunity. Many times, esp if your child has been sick for a while, the infection has passed, and you are dealing with the autoimmune aftermath.

 

You will hear many opinions here- the ultimate advice I can give you is to GO WITH WHAT IS WORKING. Try something for a month, always have your next step in mind, if your current treatment isn't working, move on.

 

All the best.

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- I would suggest a thorough battery of tests by the immunologist and neurologist to rule out other possibilities. PANDAS is a clinical diagnosis, so ruling out other causes of your child's symptoms is crucial.

 

- Many parents her will tell you to be very aggressive in looking for chronic infection. In my opinion the jury is still out on this. We haven't found chronic infection to be an issue in our kids, the theory of pandas is autoimmunity, triggered by infection. However, you can do your own research, listen to other parents, and decide for yourself.

 

- I believe in a fairly aggressive course of treatment for pandas which would look like this: 10 days of clindamycin, 30 days of zithromax or augmentin at treatment dosages, after the first month of antibiotics a trial of a month long tapering steroid burst should be considered (while remaining on abx). Depending on your results up to this point, you may want to go in different directions. If there is NO movement of symptoms, consult with the doc on the confidence of the pandas diagnosis- consider testing for chronic underlying infection and/or move toward more serious pandas treatments. If these treatments have brought your child back to about 90%, stay on this course, changing very little, keeping things calm, and give it time. If these treatments have improved your child, yet not enough, then quickly move toward IVIG or plasma pheresis (we have also used IV steroids- this is not done very frequently- but in my opinion is a great first option of the more invasive treatments).

 

Basically with pandas, the theory is: you need to address the infection, and then you need to shut down the autoimmunity. Many times, esp if your child has been sick for a while, the infection has passed, and you are dealing with the autoimmune aftermath.

 

You will hear many opinions here- the ultimate advice I can give you is to GO WITH WHAT IS WORKING. Try something for a month, always have your next step in mind, if your current treatment isn't working, move on.

 

All the best.

 

I agree with dcMom's advice - but I want to add in to be sure to give your child probiotics (acidophilus/ bifidus combination and saccharomyces boulardii) every day - at least 2 hours after antibiotics - to keep the gut in balance as far as yeast/ bacteria goes. Also, consider using ibuprofen if your child is able to take it - when syptoms spike. It is antiinflammatory and can help to get through tough times. Don't use it all the time or for extended times, though, as it can be problemmatic for the liver if overused.

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Agree with Kim-

 

for probiotics we use theralac (from Amazon).

 

My kids are currently on antibiotics twice per week. Our current protocol is that if they seem to be having a symptom increase, or if they get sick, we up the antibiotic and do regular advil dosing for 5 days. It is hard to tell, because I cannot see what would have happened, but I do think they both had a bump in the road recently that amounted to nothing (maybe because of this protocol).

 

Also- if your child has trouble falling to sleep (many pandas kids do), try melatonin. We use source naturals sublingual drops, 1/2 hour prior to wanting them asleep.

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