PANDAS physician in Raleigh/Durham, NC area

[MMC]

Hello, I am new to this forum. I am posting this request in hopes someone knows a doctor in the raleigh/durham, nc area that acknowledges pandas and has treatment options. Or even a doctor in NC within driving distance of the raleigh/durham area would suffice. Our 10 year old son has recently started showing signs of pandas. He has developed severe tics and some adhd after being exposed to strep from his sister about 2 months ago. He was put on antibiotics (w/o a strep test), and his sore throat cleared up...we are pretty sure he had strep at this point due to the onset of pandas. We believe our daughter has had pandas for 8 years, since she was 5. She has slight to moderate tics, that will come and go. I was diagnosed with sydenham's chorea in 1972 when I was 7. I believe it was really pandas, but this is the closest thing they knew to diagnose with back then. We had dealt with having one child with pandas very well, but are now overwhelmed with two. And it has hit our son a lot harder...we are really struggling about what to do. We are currently seeing a neurologist at Raleigh Neurology...he is aware of tic disorders and knows some about pandas, but I want someone to see my child who has a history with treating pandas. Currently, this neurologist has prescribed a couple of drugs to calm him down at night and we have a follow-up appointment in a month...we need more than this. I want to know the best options in preventing strep, etc. For 10 years, I was given a monthly injection of bicillion to prevent strep. From what I understand, this was normally done when rheumatic fever was confirmed...but it never was in me. Regardless, I didn't get strep any more, and pretty much grew out of my symptoms. Now, doctors don't want to prescribe antibiotics as a preventitive action from what I see. I understand resistance can be a problem. Thanks in advance for any advice on nc area pandas physicians.

[mom md]

Eliana Perrin, MD is a professor of pediatrics at UNC and did some of the origional work with Swedo. I have contacted her and she understands PANDAS well and has good contacts at the NIMH. Also, Dr. James Nelson in Charlotte is a pediatric neurologist who gets it. Also, someone told me the department of pediatrics and neurology at Duke were teaching their residents about the disease so they must believe in it. You could call over there and ask who is best with PANDAS. Your family history is fascinating and I am sure the NIMH would be interested in it too. My son has PANDAS and I had scarlet fever as a child and my great aunt had Syndenham's chorea. Hearing you now have 2 kids with it makes me scared for my other two...

[colleenrn]

I wanted to comment on siblings of PANDAS children. I have been waiting for years for someone to study the genetics/family history of PANDAS b/c I KNOW it has to be genetic. I have 4 children. My oldest diagnosed PANDAS at age 5, she is now alsmost 13. My 2nd and 3rd children are also PANDAS, but fingers crossed and lots of prayers AND antibiotics, they have not had it as severely as my oldest. I have been MUCH more agrresive with antibiotics b/c I feel that is one reason my oldest has a more severe case- we were not agressive with antibiotics with her in the first few years b/c we did not know better.

 

My last child (2 1/2) I am not 100% sure about yet, BUT he has already had strep a few times with no physical symptoms, just behavioral, so it is pointing in that direction.

 

With that said, I am positive that I was a PANDAS child and my brother and sister were not as far as we can see, so it is very possible that all siblings will NOT have PANDAS.

 

We have the family history that goes along with PANDAS. My mother had scarlet fever and rheumatic fever. My father has a rare autoimmune disorder (not sure if it has anything to do with strep b/c they have no idea what cuses this disorder). My sister's children (2 of the 3) have PANDAS.

 

There is so much to learn and figure out about PANDAS that I think researchers need to really look into the family history to understand better what is going on.

 

Colleen

[MMC]

Eliana Perrin, MD is a professor of pediatrics at UNC and did some of the origional work with Swedo. I have contacted her and she understands PANDAS well and has good contacts at the NIMH. Also, Dr. James Nelson in Charlotte is a pediatric neurologist who gets it. Also, someone told me the department of pediatrics and neurology at Duke were teaching their residents about the disease so they must believe in it. You could call over there and ask who is best with PANDAS. Your family history is fascinating and I am sure the NIMH would be interested in it too. My son has PANDAS and I had scarlet fever as a child and my great aunt had Syndenham's chorea. Hearing you now have 2 kids with it makes me scared for my other two...

 

Thank you for your reply. I emailed Dr Perrin and she replied back...gave me 3 names. One is a professor at Duke and is not taking new patients. I got Dr Nelson's name from another post on this forum and my mother-in-law in charlotte found it also. We have to get a referral from our primary dr first...hope to get this by tuesday of next week and will be calling dr nelson unless we find a good one in the raleigh area.

 

Our son is really ticcing bad tonight and has his first grunting vocal tic when he moves...very sad. Not sure how he is going to get along in school...we definitely need some expert help and treatment options.

 

There is even a little more to my family history...my father had a sniffing tic for several years (he was obviously an adult, not sure if he had issues as a child). My sister had (and still has some) mild tics, similiar to my daughter's. Not sure if this is pandas or tourettes, seems more like pandas since strep has been the trigger, but maybe it triggers tourettes also?

 

I hope your other 2 don't get it...keep them away from strep! (not sure how to do this).

 

Thanks,

MMC

[Pamm]

I was wondering if you were able to find a PANDA/PAN literate doctor in your area? I live in Wake Forest and am looking for one to see my 6 year old who has many of the symptoms. I'd rather not have to go to several doctors just to find one that knows his/her stuff, if you know what I mean. Thank you in advance for your time!

[MMC]

Wow, this is an old post, first one I posted on here in fact on 2009. Brought back some memories, mostly bad, but that's ok. Our son is now 16 and a half. We have seen several doctors over the years. He is currently being treated at Duke by Dr Van Mater (Pediatric-Rheumatology) and Dr Gallantine (Pediatric-Neurology). They combine efforts and expertise to treat kids with autoimmune encephalitis. PANDAS/PANS falls into this category. Duke does not really recognize a PANDAS/PANS diagnosis, but if they can find evidence of an autoimmunue condition that is causing Encephalopathy, they will treat it. Treatments could be IVIG, IV steroids and any number of prescriptions they may use. We have been going there over a year now. Our son is better, but still needs treatment at this time.

Dr Latimer in Bethesda, MD is an excellent PANDAS/PANS doctor. Start with her, if you need to. She treated our son several years and eventually pointed us to Duke...which is nice since it is only a 50 minute drive for us. We live just North of you. I will also PM you and offer contact information for myself or my wife. Look for this in the messenger inbox at the top right of the Forum. Also, here is a link to the aealliance at Duke...

https://aealliance.org/

[annieg]

Hello everyone,

I live in Wake Forest, NC, and our little girl suddenly started to show tic symptoms at the beginning of March 2018.  She had strep back in the fall of 2017 and now in March she started doing the jerky and twitching movements in her arms and legs. They got progressively worse in a period of 3 weeks. It was like going from 0 to 100 in a matter of days.  We noticed she even was doing them at night, which meant she did not have a good night sleep, she was restless.  Desperate, on March 27th, we took her to Duke's childrens ER and they admitted her in order to do an EEG and ensure she was not having myoclonic seizures. They also did a rapid strep test and culture and blood titers. They all came back negative. They diagnosed her with a tic disorder and follow up neurology clinic appt in May (4 weeks away) and it feels like forever. They also prescribed her clonidin at bed time. This is the 4th day we have been using it and we have not seen any improvement in her tics nor her sleep.  I am growing desperate here. I researched all these things she is "suddenly" having and stumbled across Pandas. To anyone who has endured with this condition, please share any advise or wisdom you may have?

[MMC]

Hi annieg,

I’m sorry to hear of your child’s issues.  I know it is very difficult to witness your little girl’s discomfort and can certainly relate to your desperate feelings.  I am not very active on this forum, although I do check it occasionally. It has been nine years since our son was diagnosed with PANDAS (also PANS).  He will be 20 years old this June.  He is much better, but is still being treated by docs at Duke.  Duke does not recognize a PANDAS/PANS diagnosis…they call it AE (Autoimmune encephalitis).  AE has different symptoms,  severities and causes, but is basically inflammation in the brain caused by an autoimmune reaction…and strep can cause this.  There may still be some on the forum whose child (children) have been treated by the AE docs at Duke who can speak to the illness better than me.  But, in a nutshell there is a team at duke that you need to try and see…go to this website for more info… https://aealliance.org/

The main docs are a pediatric neurologist, Dr William Gallentine, and a pediatric rheumatologist, Dr Heather Van Mater.  Duke neurology clinic that you have an appointment with may not be much help, but maybe they can help you get an appointment with Gallentine and Van Mater. 

Another doc we saw who was very helpful to us (and many on this forum) was Dr Beth Latimer in DC.  She is a leading PANDAS specialist, and is worth the trip up there.  She has seen both of our children, (our daughter has PANDAS as well, but nowhere severe as our son.) http://www.bethlatimermd.com/

I am going to PM you as well…to see it, click on the messages icon on the top right of the webpage after you login.

[simmonstrout]

Hello, I've read through this thread and have tried to pursue Dr. Van Mater at Duke for my daughter, who has been suffering with PANs for the past 5 years.  Her doctor and I have been searching for years, trying to treat for various things, and finally landed on this diagnosis (Cunningham Panel came back positive for all but one marker).  The problem is that Duke said we have to submit an application for approval.  My dr submitted the materials, and they denied us admittance into their program to treat AE.  My daughter was never observed, it was based on the application.  So, I moved on to a Dr. O'Connor at AAIR in Charlotte.  She took our money and started my daughter on antibiotics and ibuprofen (she is already taking a ton of supplements including a lot of anti-inflammatories).  She said the next step is steroids, then IVIG.  She does not submit to insurance, which I'm familiar with.  What is difficult, however, is her office staff is very unorganized and unaccommodating.  I've asked for a receipt with codes so that I can submit to insurance for our in office visit (which cost $1200).  They are unable to provide me with a receipt that has procedure codes so that I can submit to insurance.  So, after going around in circles with this doctor and her office, I am wondering if I should try Duke again and be more persistent.  Or are there other doctors in the area now that provide PANs treatment?  Does Duke do IVIG and does any of it get covered by insurance?  Are there any other treatments offered there or anywhere else?  Or is IVIG the most effective treatment used?  I appreciate any information you can provide or point me to.  Thanks!