shannon aka mommy Posted March 21, 2012 Report Share Posted March 21, 2012 Hello everyone -- I'm sorry, but this is going to be a long post... I have a 14 year old ds who has had a dramatic increase in OCD symptoms and the onset of tics in the last two weeks. I didn't realize he had OCD sypmtoms before all of this happened, but looking back now I can see that he has had OCD for at least the last year -- spending forever brushing his teeth -- constant questions... Anyway, we were orginally looking at Tourettes, but then we ran across PANDAS and he seemed to fit description. In early January ds had horrible headache and fever we think now -- strep. March 4th we were in the ER asking why our son was "jerking". Our oldest son has epilepsy so we were thinking this was the same. When I read about Tourettes it seemed far worse than epilepsy. I cried because there was no "magic pill'. Our ped doc was helpful, but only slightly familiar with PANDAS. We had the titter? and strep tests which came back negative. She did already prescribe amoxicilin for him for 30 days, 500mg a day. We found Dr T at USF in Tampa and called for an appointment -- we live in north Florida. My husband spoke with someone there who agreed that my son fits the symptoms and because we seem to be catching this early said they would try to get him in soon. Just got a call today that our appointment would be May 23rd! So, now I'm wondering if we should be looking around for someplace else to take him. How important is it that we get him in to see someone soon? My husband is the tech guy and he is reading up on this stuff like mad. My husband thinks we need to use a different antibiotic because he (my husband) is allergic to it after repeated strep treatment as a kid. He is going to read all the stuff I have found from Buster tonight and make a new appt with our local ped. She was real reluctant to prescribe anything other than amoxicilan so we aren't sure how hard we should push for this. My husband and two older boys are very allergic/intolerant to foods so I have basically put the kid on an elimination diet. He also takes daily Epsom Salt baths (very helpful)and I have added L-tryptophan to his suppliments. I read about all this in a Tourettes book and site so I'm not sure if it is good to do if we suspect PANDAS or not. We are getting by at this point. He is VERY sensitive to noise -- driving me crazy. Bought expensive new headphone due in the mail tomorrow -- yeah! He is homeschooled so I have basically cut out all subjects except music and computer editing -- which he loves:) This forum has been so helpful to me. Knowing other people are going or have gone through this is very comforting. Any advise is greatly appreciated. Shannon Link to comment Share on other sites More sharing options...
Chemar Posted March 21, 2012 Report Share Posted March 21, 2012 welcome bumping your thread up for others to see and reply Link to comment Share on other sites More sharing options...
hugs2day Posted March 21, 2012 Report Share Posted March 21, 2012 Several doctors told me my oldest ds9 had tourettes I knew he didn't then I went to a neurologist that listened and diagnosed PANDAS. I let my son do all the talking and explaining of his symptoms and sudden onset (the date he says he lost his life), etc., and I was horrified because he had been hiding a lot of his OCD from me. Anyway we tried Azithro and it helped but not enough then ds9 finally found relief with Penn VK daily and he is now in full remission (only 3 months) so I am still crossing fingers and praying. Allergies are a trigger as well for both my kids and allegra helps as well as Isocquercitin and daily supplements like: vit c, vit d, multivitamin, b6/magnesium, natural calm every other day, omega 3 (coromega), probiotic. DS9 has not flared at all since being on the Penn VK even with a loose tooth which used to send him into a tailspin. You should definitely get treatment as soon as possible as the symptoms could get much worse the longer your son goes without the antibiotics that will work for him. The longer he is sick the longer the recovery period. Azithro works very well for most kids...and sometimes its the dosage that is not working as well. My younger son also has pandas and he is on a higher than normal dose to keep his symptoms under control. There is a list of Pandas doctors on the Saving Sammy website, your in a good area to find a great doctor. It will be okay its just a tough transition to get through as you find treatment that works. He will be okay, there is help and treatment. P.S. Ibuprofen really does help decrease the symptoms and because PaNDAS hurts joints, headaches overall inflammation therefore, Ibu is a good idea to add. I also have a list of doctors that Yale University provided me, I can email it to you later tonight when I get home. Good luck. Hello everyone -- I'm sorry, but this is going to be a long post... I have a 14 year old ds who has had a dramatic increase in OCD symptoms and the onset of tics in the last two weeks. I didn't realize he had OCD sypmtoms before all of this happened, but looking back now I can see that he has had OCD for at least the last year -- spending forever brushing his teeth -- constant questions... Anyway, we were orginally looking at Tourettes, but then we ran across PANDAS and he seemed to fit description. In early January ds had horrible headache and fever we think now -- strep. March 4th we were in the ER asking why our son was "jerking". Our oldest son has epilepsy so we were thinking this was the same. When I read about Tourettes it seemed far worse than epilepsy. I cried because there was no "magic pill'. Our ped doc was helpful, but only slightly familiar with PANDAS. We had the titter? and strep tests which came back negative. She did already prescribe amoxicilin for him for 30 days, 500mg a day. We found Dr T at USF in Tampa and called for an appointment -- we live in north Florida. My husband spoke with someone there who agreed that my son fits the symptoms and because we seem to be catching this early said they would try to get him in soon. Just got a call today that our appointment would be May 23rd! So, now I'm wondering if we should be looking around for someplace else to take him. How important is it that we get him in to see someone soon? My husband is the tech guy and he is reading up on this stuff like mad. My husband thinks we need to use a different antibiotic because he (my husband) is allergic to it after repeated strep treatment as a kid. He is going to read all the stuff I have found from Buster tonight and make a new appt with our local ped. She was real reluctant to prescribe anything other than amoxicilan so we aren't sure how hard we should push for this. My husband and two older boys are very allergic/intolerant to foods so I have basically put the kid on an elimination diet. He also takes daily Epsom Salt baths (very helpful)and I have added L-tryptophan to his suppliments. I read about all this in a Tourettes book and site so I'm not sure if it is good to do if we suspect PANDAS or not. We are getting by at this point. He is VERY sensitive to noise -- driving me crazy. Bought expensive new headphone due in the mail tomorrow -- yeah! He is homeschooled so I have basically cut out all subjects except music and computer editing -- which he loves:) This forum has been so helpful to me. Knowing other people are going or have gone through this is very comforting. Any advise is greatly appreciated. Shannon Link to comment Share on other sites More sharing options...
abbe Posted March 21, 2012 Report Share Posted March 21, 2012 what is penn vk mean Link to comment Share on other sites More sharing options...
3boysmom Posted March 22, 2012 Report Share Posted March 22, 2012 Bumping up post Link to comment Share on other sites More sharing options...
bulldog24 Posted March 22, 2012 Report Share Posted March 22, 2012 Pen vk- pennicillin potassium Link to comment Share on other sites More sharing options...
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