Jump to content
ACN Latitudes Forums

Rachel

Members
  • Content Count

    339
  • Joined

  • Last visited

  • Days Won

    7

Rachel last won the day on September 21 2016

Rachel had the most liked content!

About Rachel

  • Rank
    Advanced Member

Contact Methods

  • Website URL
    http://survivingpots.com

Profile Information

  • Gender
    Female

Recent Profile Visitors

1,150 profile views

About Me

I am the mother of a 13 year old son that was orginally diagnoised with Postural Orthastatic Tachycardia Syndrome (POTS) in October 2011. My son was diagnoised with vocal tics in August 2010 after having a sore throat but the rapid strep test was negative. In December 2010, my son had walking pneumonia and his health has gone downhill ever since this illness. The following year my son spent 10 days in the hospital running test after test and was diagnosied with POTS. MAYO reconfirmed this diagnosis in December 2011 but could not explain the other strange symptoms that were not part of POTS. After being on medications for POTS condtions and my son's symptoms becoming worse after each illness, our cardiologist started running test to check for autoimmune illnessess. My son was seen by an adult immunologist in July 2013 that discovered when my son had a high white blood count, his T- helper cells were too low. In August 2013, my son had his first Cunningham Panel done and these test resutls were strange. They did not fall in the negative range but were not in the likely range. In October 2013, my son had a double ear infection and his symptoms flared and got worse. Our cardiologist was able to get my son into a PANDAS study and a second Cunningham Panel was done in October 2013. The results came back highly likely. In December of 2013, my son was seen by a pedatric immunologist in Plano, Texas. This doctor has diagnoised my son with Unspecific Encephalities. He has ran more testing and it revealed high antibodies in 4 different virus. My son is currently wheelchair bound due to tremors. Since the double ear infection, my son has severe scalp pain, headache and cannot stand to have a blanket on him at night. Vocal tics increase and headaches get worse when trying to wash hair. Haircuts are immpossible at this time. My son also has a hoarse voice that comes and goes. All these symptoms have been mentioned to our new doctor. My husband and I are desperate to have answers to get our son on a road to recovery.

×
×
  • Create New...