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Dr Chugani / IVIG / Other docs?

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My 11 year old dd has been treated for the last year with high-dose augmentin, predinsone, low-dose naltrexone, clonazepam, NAC, GABA, and Omega Via (it took 6 years to get the right diagnosis, but that's a different story, and one many of you know from experience). She was holding steady on that regimen until June, but we've been in a devastating downward spiral since then. She has a wonderful psychiatrist who is incredibly knowledgeable about PANDAS, and he thinks (we do too) that it's time to try IVIG.  We can't go any higher on the antibiotics or the prednisone.

She starts sixth grade in just a few weeks, and at the moment, I don't think she's going to make it. (We've missed a year of school for PANDAS in the past, and unfortunately, her current symptoms are as bad or worse than they were that year). We would like to start IVIG as soon as possible, with the hope that it works quickly, but also knowing it may take time, or not work at all.

I'm hoping some of you with experience might be able to help us with these questions?

  • We have an appointment with Latimer, but it's 2 months away. Has anyone done IVIG with her, and if so, how long did you have to wait after your initial appointment?
  • We were also referred to H. Chugani at Nemours Children's Hospital, who we thought might see us sooner, but when I called to set up an appointment, the person who answered the call said he left Nemours last month, and she wouldn't give me any information about where he is. I haven't been able to find him by internet search either. Does anyone know how to reach him or if he's still practicing? It seems a bit odd to disappear into thin air after being Chair of Neurology. Hopefully everything is ok...
  • We're on the east coast. Any other docs you can recommend for IVIG? 

Many thanks in advance!


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Just a couple random thoughts...

Has your DD been tested for Mycoplasma Pneumonia? My DS 13, who also went undiagnosed for many years, responded well to Augmentin for awhile a couple years ago, then it stopped helping. He tested positive for Mycoplasma Pneumonia and responded well when the antibiotic was switched. He also responded well when we added an herbal antiviral. 

Also, are you treating for yeast?  After the initial successful of the high dose Augmentin (which worked like magic for awhile), my DS began to decline rapidly, but improved when treated for yeast.  We use Saccharomyces Boulardii in addition to regular probiotic, as well as Candicid Forte.  

Does your DD’s psychiatrist not work with IVIG?  My DS’s IVIG has been ordered by his psychiatrist.  This doctor uses an infusion company and the nurse comes to our home.  

Lastly, my son has been receiving monthly IVIG for the past 3 months.  This has gotten him about 85% improved.  Again, this has worked like magic.  He was doing one of his remaining compulsions (changing his clothes) about 40 times a day. After HD IVIG, he stopped this behavior immediately, but it returns after 3-3 1/2 weeks (soon before the next IVIG is scheduled). 

At last appointment, doctor said there must be a reason IVIG isn’t lasting, and he had DS start an herbal anti parasitic.  Dose was 10 drop 2x daily.  Gave DS 10 drops first morning, and DS became very agitated and then sleepy.  Doctor said to slow it down, and we worked up to 5 drops 2x daily so far.  At the risk of sounding like a nut, we are seeing a big improvement.  DS keeps saying, “I feel great.  My worries are going away”.  

My son’s case was severe and spanned many years.  OCD symptoms you would not believe, if you didn’t see.  I feel like we are witnessing a miracle before our eyes.  

One more thought...

Did your DD’s decline coincide with dental cleaning or dental work?

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Before I knew about PANDAS, my son had dental work done in 2012.  He had sensory issues since he was a baby, but was excelling at school, socially, etc.  He had just turned 8.  Within 48 hours of his dental work, he developed severe OCD and moderate tics.  His psychiatrist at the time said it was highly likely triggered by the nitrous oxide from his dental work. She later threw that theory out when his B12 levels were normal and the symptoms continued.  He was treated unsuccessfully for OCD with psychiatric drugs for the next 2 1/2 years.  I told our story to Wendy Nawara at PAS.CARE, and she informed me that a common trigger for PANS / PANDAS is bacteria “unleashed” during dental cleaning or dental work.  I believe either the PANDAS Physician Network or PANDAS Network has guidelines for preventative abx before, during and after dental appointments.  I believe it’s full strength.  My DS’s current psychiatrist put him on HD Augmentin for 1 month (starting a week prior) for his last dental appointment.  

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My daughter has been a patient of Dr. Chugani for a couple of years, and I just received a letter from his office about a month or two ago that he has moved back to Chicago area. He has a position at one of the university hospitals there (can’t rememver which one). 

Keep that appt with Dr. L. It might be your best shot. 

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Yes, I will second the "a common trigger for PANS / PANDAS is bacteria “unleashed” during dental cleaning or dental work." statement.  In our case, our son was also lax on brushing, and the dental hygienist said he had mild gingevitis.  That explains why he was slowly getting worse over a couple of months (dentist confirmed that bacteria in the mouth can enter the blood stream directly through gingivitis-diseased tissue).  But then when he had the cleaning done - pow, an explosion of OCD.  We solved it, albeit over weeks, with regular mouthwashing, and more regular brushing.

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