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September 10, 2012 at 9:14 am #3173valeriesMember
We need help! My husbands ocd is getting worse.
Some background info – My husband had a lot of reccurent strep throat infections as a child and as a result had his tonsils removed. As a teenager he developed ocd and went to a cbt which, according to him, did not help very much. They tried several medications but none gave him any relief and instead made him feel worse. Sometime after he stopped going to therapy it seemed to clear up on his own when his ocd diminished greatly.
When I met him, his ocd was almost nonexistent except for very ocassional tics. However, about a year and a half ago it started to come back. We've traced the inital progression to about the time he was having some symptoms of a sore throat and sinus pain and was diagnosed with a sinus infection. The doctor gave him some steroids and allergy medicine (no antibiotics) and sent him on his way. I should mention he also has type I diabetes. The steroids didn't seem to help at all. Eventually the sinus pain subsided (several months later) but the ocd is getting worse and it greatly affects our day to day life. He often must redo tasks over, does tapping, blinking, repetitive movements, vocalizations, won't go into certain rooms, can't touch certain things, won't eat certain foods. I actually had to replace just about all our kitchen utensils and baking dishes because he would not eat food prepared in them. Food also seemingly “goes bad” and he won't eat it anymore. You can imagine my frusrations as we have spent probably hundreds if not thousands of dollars having to replace items and food.
I've urged him to get help but he insists he can cope on his own. I did some research and found PANDAS in children, is it possible for an adult to suffer from PANDAS? What kinds of tests do we do and where can we find a doctor who will take us seriously? We live in central Texas but I'd be willingly to go just about anywhere.
Any help is greatly appreciated.September 17, 2012 at 4:48 am #3251Dr. Michael JenikeMember
it is impossible to tell if pandas could be involved. it is generally considered that pandas does not occur in adults but i have seen a few adults who have a history consistent with pandas and who relapse when they get infections as adults. almost nothing is known about pandas in adults. if he had a long term sinus infection, i am not sure why antibiotics were not tried. it is possible that they could help his OCD symptoms. there seems little to be lost in giving a trial of antibiotics in this situation.
however, it is crucial that he get treatment for his OCD that should include a good CBT therapist. you can go to http://www.ocfoundation.org). however, again, there is next to nothing known about pandas in adults.
I hope this is helpful. all best wishes,
Michael Jenike, MDSeptember 19, 2012 at 7:49 pm #3253RainMomMember
Hi, I saw your post about your husband. It seems PANDAS/PANS runs in families and I've heard from quite a few folks who were successful figuring it all out by having a neurologist or other specialist run mitochondrial labs (whole genome, dna, etc). I just attended a UMDF mito conference and the experts were discussing mitochondrial disease and it's effects on the immune system. The message was mito disorder leads to immune system weakness, and then the body doesn't get rid of illnesses like it should. Besides the usual pandas/pans types of panels found on the PandasNetwork website, I think mitochondrial DNA testing should be added to the list. it was really helpful for our family. (p.s. here's a few companies that run these tests- Transgenomics, Medomics, and Courtagen- I don't work for or promote any of them, just passing info along).
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