Let's talk

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If your life depends on immune globulin, this column is for you! Here, we have an opportunity to net- work and share our experiences about all of the ramifications of our illnesses, and to learn from oneanother. If you have a question, comment or experience to share for a future column, email it to us [email protected].
Joanne Lund is a 46-year-old woman motor and math skills and obsessive with two sons — Nick, 16, and Danny, compulsive behaviors such as repeated autoimmune neuropsychiatric disor- anxiety, unfounded fears and phobias. ders associated with streptococcal Initially, symptoms subside after antibi- otic treatment but reoccur and get rare autoimmune disease that occurs after a streptococcal infection, and infection. If not treated before ado- affects children as young as 15 to lescence, by age 14, the neuropsy- 18 months old. It is an easily misun- completely missed. A history of other long-term prophylactic antibiotics, conditions such as Sydenham’s chorea (St. Vitus’ Dance), sudden onset in six months, he was ill again, withhorrible nightmares, fears and tics.
He then had his tonsils removed, “Nick met all the criteria to be
which helped until he got sick again,this time with much worse behavioral admitted to a PANDAS clinical
trial . but the study lost
determined that Nick met all the cri-teria to be admitted to a PANDAS its funding.”
clinical trial. At the end of the trial,he was to be administered IVIG, Tourette’s syndrome and/or obsessive Haldol and selective serotonin reup- psychiatric symptoms appear suddenly, tics, separation anxiety, anorexia with a fear of choking on food while Shirley: When were your children
patients to look frightened, hyper- pediatrician’s office. I was finally able activity, a significant decrease in fine Joanne: My oldest son, Nick, was
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weeks, his improvement was incred-ible, but the doctor declined to follow 2. National Institute of Neurological Disorders and Stroke tests fit the criteria for IVIG treatment,but the hospital refused to administerit, the doctor refused to prescribe itand the insurance company refused Joanne: The medical specialist in
we could to get IVIG in our own state.
Shirley: Do you have any final
Joanne: Follow your heart. You
Shirley: Where did your children
Joanne: After many tries, we were
SHIRLEY VULPE, EdD, has
Shirley: Has IG helped?
Joanne: Definitely. I now have two
tional administration, a master’s in early childhood special education, a BSc in occupational therapy and a diplomain physical and occupational therapy. She worked for 38 years specializing in setting up rehabilitation and early childhood special education programs. Shirley: Have you received any
Shirley: What was the worst advice
autoimmune diseases: common variableimmune deficiency and chronic inflam- Joanne: My husband, my mother,
Joanne: To use Haldol for Nick. It
matory demyelinating polyneuropathy. She has been married for 45 years to a physician, is the mother of two children Shirley: What was the best advice?

Source: http://www.igliving.com/Assets/IGL/Articles/IGL_2010-12_AR_Lets-Talk.pdf