Saturday, September 28, 2013

PANDAS Clinic Appointment Day

Yesterday we had an appointment with Dr Chang at the Stanford Hospital, PANDAS Clinic. We had waited 5 months for this appointment.  Like all families with a child with PANDA symptoms we are looking for answers.  There are very few doctors that even know about this disease that often starts after a bout with a strep infection.

Our Grandson has been suffering from this disease for several years now.  His family has been struggling with doctor appointments, tests, frustration in finding an answer and cure for this problem. Todays 2 hour appointment consisted of mostly reviewing our grandson's medical history.  All his med and lab record will be sent to Dr Chang to be reviewed and a follow-up appointment made.  It was so good to be able to talk with a Doctor that knows and has seen these symptoms and can understand what has gone on before.  And HOPE is a wonderful thing.

I try not to put serious stuff on this blog, but I think that there are tons of kids out there that have are suffering from this auto-immune disease and are not diagnosed correctly because their parents and family doctor are not aware of PANDAS.

P.A.N.D.A.S. stands for Pediatric Autoimmune Illness Associated with Streptococci.
The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.
When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).
Symptoms include sudden onset of OCD* and/or Tics along with at least 2 other following symptoms:
Sensory sensitivities
Separation anxiety
Sleep difficulties
Personality changes
Urinary frequency
Tics or abnormal movements
Irritability or agression
Inability to concentrate or ADHD
Deterioration in learning abilities
Developmental and age regression
     *OCD may present as severe anxiety

for more information see:

Other than that news, I did complete copying my 3 new patterns so I will be having more information on how the bustle dress project will be coming along. 

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