Rachel

Since my ds had a double ear infection last October his scalp pain and hypersenitiviy to touch is unreal. His vocal tics start very strongly when he washes his hair and he is in tears because of the pain. I know this is not normal and his doctors have been told of this problem. My son can also not stand to have anything next to his legs. He would rather stay cold then to have a blanket on his legs. So at night I wait until he is asleep before I attempt to cover him up. My home stays warm because I have a wood stove. After the ear infection , the Cunningham Panel was rerun and all of the those antibodies were highy elevated. When these antibodies go up like this, does it make symptoms worse? Is this the norm?

So sorry about your appointment. I would encourage you to find a doctor that specializes in PANS/PANDAS. I found a doctor in Texas but thats a really long drive for you. I am new to this forum but there is a post about doctors that specialize in PANS/PANDAS. Rachel

My ds was seen by Dr. Rao the last of December. The doctor put him on Azithromycin 250mg daily, L-Carnitine. NAC, CQ10, and B-12 injections 2x weekly. My ds has been sick for at least three years. This doctor thinks my ds my have mycoplasma stuck in his cells. I was told this was the first line of treatment. The Azithromycin is a 30 day supply with 3 refills. How long should it take before I could possibly see any improvement? Rachel

I have also been trying to track down a positive strep test on my ds but never could. When your daughter first got sick or even six months before it began was a strep test ever done. If a test was done, you should be able to get a copy of the result. The strep titer test is also another possible test that could be run but I think it has to be done within 2-3 monthes of the suspected infection. I am very new to the PANS/PANDAS diagnosis. I've been researching and trying to understand how this is all diagnosied. Wish you the best with your daughter. Rachel

I wish you the best Terry. My ds may be going down this road soon. It's hard to get a doctor to recommend this treatment. Sounds like you have found a doctor that's willing to help.

My ds is in a PANDAS study with Dr. Cunningham at OU. I am waiting for the results of another test to check for the heart antibodies. At this time my ds is under the care of a cardiologist because he has problems with a high heart rate and low blood pressure . When my son's body would not respond to the POTS medications, our cardilogist has started looking for other causes. He is a cardiologist at Children's OU (Oklahoma University). Rachel

This was helpful to know. Rachel

My son is currently homebound due to his medical condition. He is enrolled in a k12 virtual online school and he is on an IEP. An IEP provides more protection than a 504. I taught for 21 years in the public school system as a special education teacher. As a parent, you know what your child needs to be successful. Be up front and tell your school how this condition is affecting your child. Rachel

Hi Everyone I am a parent of a 13 year old son that has recently got back results on the Cunningham Panel. His antibodies came back highly likely for PANDAS. Recently, my son was seen by an immunologist in Texas that specializes in Autism and PANDAS. My son has not offically been diagnosied with PANDAS because his illness is progressive. My son had vocal tic start after a sore throat (back in August 2010) but rapid step test came back negative. Six months later, my son had Mycoplasma pneuomia and the mycoplasma titer showed up out of range in blood work 2 months later. Since this illness my son's health has went down hill. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. My son has been on medications to help with POTS but his symptoms have continued to get worse when ever he gets sick with a virus or infection. This last year my son had several different test to check for other immune related illness. Last August in 2013, my son had his first Cunningham Panel Test. This first test result showed to be in the first gray area between unlikely and likely. About a month later, my son had a double ear infection and all his symtoms (vocal tics, hypersensitivity, headache, and scalp pain) went through the roof. My son is currently in a PANDAS study and the Cunningham Panel was ran again. This time all the antibodies were highly elevated. I was told that PANDAS is normally something that happens all within 24-48 hours. Can PANDAS be progessive? Or is this PANS? Rachel

I have tried the L-Theanine with my son. The research says if helps with sleep and helps regulate serotinon and dopamine levels in the brain. My son took it for 3 months and I did not see any improvement in my son's sleep issues. Rachel