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December 22, 2013 at 12:27 pm #3208mom9496Member
I am a desperate mom seeking help for my son! My son was just diagnosed with PANS/PANDAS this week after developing severe facial, vocal and motor tics in the past year.
He developed Trichotillomania and severe nail picking/biting when he was 9 and was given an OCD diagnosis at the time. In addition he was also given an ADHD diagnosis. He had tons of strep infections as a child including a peri-anal strep infection after which the trichotillomania and nail picking symptoms started. The pediatrician was not familiar with PANDAS or else I would have investigated into this problem years ago. When he was 14 he was diagnosed with atypical PDD-NOS. I have consulted countless doctors and therapists for his behavioral, sensory, and other issues over the years, never knowing that infectious triggers were part of his problem.
He also has a history of multiple deer tick bites for which he was not appropriately treated by his pediatrician, in spite of clinical symptoms for Lyme disease.
He was recently diagnosed with chronic Lyme disease with CDC positive titers, and at his recent appointment with the doctor (an immunologist) who diagnosed him with PANS/PANDAS, he was told he also has a chronic mycoplasma infection with sky high titers and a chronic sinus infection. He has a followup appointment with this doctor, for comprehensive allergy testing and the results of his immune function tests, and the whole family was tested as well at his appointment for being strep carriers and to see if we also have mycoplasma. We will get these results at the follow up appointment.
The immunologist has recommended long term antibiotics for the chronic sinus infection, mycoplasma infection and Lyme disease, and also recommends IVIG treatments, but at this point we are awaiting his immune function testing to see if there are deficits in that, which would allow insurance to pay.
My problem is that my son has an irrational fear of taking medications. He is afraid of dying from an allergic reaction and is afraid of experiencing side effects from medications. In addition, he is afraid of experiencing possible herxheimer reactions from the Lyme treatment.
At this point, his anxiety is severe! In July/August of this year he had to sleep in my room his anxiety was so high, and it fluctuates radically. He is a college student so he is often on the phone to me in the middle of the night with severe anxiety. When he comes home from college, he literally does nothing except wrap himself in a blanket and play games on the computer all day so he does not need to deal with any of his problems.
He refuses to take any antibiotics prescribed by the doctor. He tics are severe and socially disabling. He has no friends and his independent living skills are far below a 19 year old. His anxiety is so high that he cannot learn how to drive a car. In addition, he has lost 37 pounds in a year and a half and he seems unable to keep his weight up. Whilst he is very impaired from his PANDAS symptoms, he is intellectually gifted, so he has managed his college course work.
Whilst the PANDAS/PANS diagnosis is recent, I have been seeking intense help for him for the past 2 years, but he refuses any treatment offered to him. Because he is 19 there is nothing I can do to make him comply, and I am watching my child self destruct before my eyes. This is killing me!!
We were in family therapy for 2 months during his summer break which did nothing to change his behavior. I have contacted his therapist at college who is very concerned, and I am awaiting a call back from her tomorrow.
I am really concerned about his current functioning and his refusal to take care of himself. He does not want to hear anything about his illness. I am not sure if this is unique with this kind of diagnosis but I have done everything a concerned parent should do.
I love my son dearly and I am so distressed and concerned about my son's future. Any helpful suggestions would be appreciated.
Many thanks.March 4, 2014 at 10:53 am #3332Dr. Michael JenikeMember
unfortunately, i am at a loss as to what to recommend as it seems like you have good caregivers. i am not sure why he is refusing treatment, but it probably some OCD fear. if he would see a good CBT person, they may be able to work on this symptom. if he wanted, i could discuss this fear with him and see what might break through it. all best wishes,
Michael Jenike, MD
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