One Year Update

[Phasmid]

Hello everyone,

 

Wanted to give a, probably last, update on my son since this month marks 1 year post IVIG treatment for his PANDAS symptoms. It has been 8 years since all started. He had been treated with antibiotics, but didn't get IVIG until 2010, a low dose treatment. In 2011 he got one high dose treatment here locally at our own hospital, rather than down at UCLA. We worked with Dr. T. for initial tests and consultations, Dr. K for phone consultation, Sean McGhee, MD at UCLA, and our local pediatrician who was willing to learn, get up to speed, and think out of the box. My son was severe and suffered with every symptom ever listed for this disorder. He missed a lot of school, missed out on much of his young life due to the anxiety stuff, and suffered for six years with trichotillomania, leaving him without eyebrows or eyelashes. If it hadn't been for Dr. K insisting that high dose IVIG would be the only way to stop the trichotillomania, we may not have reached this point. His high dose was last September, and it took a few months to see the effects. But, one year later, my son has thick, dark eyebrows and his eyelashes are getting thicker all the time. He has not had a true relapse. He has become ill with strep sinus infection twice since then, and he did start to pull at eyebrows, but stopped as soon as he was started on antibiotics. His pediatrician calls in antibiotic orders to our pharmacy without hesitation when I call and report that he has a suspected sinus or throat infection. He also treats me at the same time if I have the same symptoms to keep me from reinfecting my son. So, we ended up getting the very best care, and have such a great local doc who saved us, literally. It is bittersweet, somewhat, because my son, now a Freshman, tells me that girls approach him and tell him he looks very nice with eyebrows, reminding him of his ordeal. I try to keep it in a positive light. This year marks the first school picture we have of him with eyebrows, since second grade. I am so thankful, and so relieved that this disorder is more understood now, and kids are getting diagnosed sooner and treated sooner. Please mention our case to anyone dealing with trichotillomania. I really was so skeptical that IVIG would cure my boy.

 

God bless everyone,

Mary

[dut]

That's wonderful news!

[JuliaFaith]

Thank you for sharing. Such a good message that there is always hope. Best wishes for your family.

[DeterminedMomVA]

I am so glad to hear your DS is doing so well! What great news!

[cobbiemommy]

Whoo hoo!!