tln21572 Posted January 30, 2013 Report Share Posted January 30, 2013 My DS was diagnosed with PANDAS over 8 years ago. High-dose, long-term (1 year) antibiotics worked for him and have only had to have periodic treatment over the years when exposed to strep. The last several weeks he has had headaches almost non-stop. He has not been sleeping well for a while now. He is 17 and wants to stay up half the night. We have tried to tell him that this is not helping the headaches, but he said he just can't sleep. Took him to pediatrician today. His pediatrian was out of the office today, so we saw an associate. After telling her him syptoms and an office exam, she suggested we try to trazodone HCI to help him sleep. I googled trazodone and was shocked to find that it is used for depression. I am not a fan of these drugs and have felt very blessed that antibiotics worked for us. What I am wondering is if anyone in this forum is familiar with trazodone and what their experience has been with this drug and their children. I am very hesitant to give this to him because I don't want to exacerbate and trigger any PANDA symptoms. Thanks for any help or information you have on this. Link to comment Share on other sites More sharing options...
mdmom Posted January 30, 2013 Report Share Posted January 30, 2013 (edited) I used Trazadone once for my non-PANS/PANDAS daughter who has sleeping issues as symptoms of Lyme, Bartonella, Babesia. I, like you, was concerned that it is indicated for depression. I thought our doc was secretly trying to tell me something about my daughter.... I begrugingly tried it once - with my daughter's permission since I always tell her it's her choice of what she puts in her body (remember, she's my non-PANS/PANDAS child, so I can reason with her like this). It made her feel like she was going crazy. She kept telling me, "Something is wrong with my brain." Not sure if she felt woozy (like drunkeness), but we never tried it again b/c she did not like the feeling it gave her. I would say she appeared to be paranoid after taking it. Sorry this probably isn't helping you much, but I thought I'd throw out our experience. As a side note, we did try other "natural" sleeping aids like Melatonin and Valerian Root. The Melatonin did nothing and the Valerian Root made her have frightening, vivid dreams. Edited January 30, 2013 by mdmom Link to comment Share on other sites More sharing options...
MomtoJake Posted January 31, 2013 Report Share Posted January 31, 2013 I personally have taken Trazadone in the past for several years for sleep prescribed by my OB-GYN and have had no issues with it, however, I don't have PANDAS! Link to comment Share on other sites More sharing options...
tln21572 Posted January 31, 2013 Author Report Share Posted January 31, 2013 I used Trazadone once for my non-PANS/PANDAS daughter who has sleeping issues as symptoms of Lyme, Bartonella, Babesia. I, like you, was concerned that it is indicated for depression. I thought our doc was secretly trying to tell me something about my daughter.... I begrugingly tried it once - with my daughter's permission since I always tell her it's her choice of what she puts in her body (remember, she's my non-PANS/PANDAS child, so I can reason with her like this). It made her feel like she was going crazy. She kept telling me, "Something is wrong with my brain." Not sure if she felt woozy (like drunkeness), but we never tried it again b/c she did not like the feeling it gave her. I would say she appeared to be paranoid after taking it. Sorry this probably isn't helping you much, but I thought I'd throw out our experience. As a side note, we did try other "natural" sleeping aids like Melatonin and Valerian Root. The Melatonin did nothing and the Valerian Root made her have frightening, vivid dreams. Thank you for your response. It's funny, I thought the same thing about his doctor secretly trying to tell me something about my son lol. We've tried "natural" as well, specifically Melatonin, and like you guys, it did absolutely nothing. My fear is this doctor is prescribing this without really thinking what could the interaction be with PANDAS. This doctor was an associate of his pediatrician and is not as familiar with my son. I'm not sure what we will do, still researching. Thanks again for your response it did help. Now I don't feel so paranoid myself--someone else thinks like I do Link to comment Share on other sites More sharing options...
dcmom Posted January 31, 2013 Report Share Posted January 31, 2013 tin21572- Just wanted to add that my dd (12) had a bout of headaches last spring. Ped said sinuses, allergies... It did not make sense to me. The headaches were accompanied by a slight change in mood and a change in behavior, spending a lot of time in her room. Going with my gut, five days of steroids cleared ALL of it: headaches, mood, and staying in her room. Link to comment Share on other sites More sharing options...
tln21572 Posted January 31, 2013 Author Report Share Posted January 31, 2013 tin21572- Just wanted to add that my dd (12) had a bout of headaches last spring. Ped said sinuses, allergies... It did not make sense to me. The headaches were accompanied by a slight change in mood and a change in behavior, spending a lot of time in her room. Going with my gut, five days of steroids cleared ALL of it: headaches, mood, and staying in her room. Oh my, you described my ds (17) to a tee. No drastic changes just subtle and staying in room a lot. Headaches have been going on for about 3 weeks now. The associate doctor is just trying to treat headaches, as she thinks loss of sleep is causing headaches; however, sleep issues have always been an issue with my DS with no headaches. I also think loss of sleep is due to typical teenage activities. Thanks so much for steroid idea. I will be calling his regular DR to discuss. Thanks again. Link to comment Share on other sites More sharing options...
ThinkGutBacteria Posted January 31, 2013 Report Share Posted January 31, 2013 Insomnia and headaches are classic signs of sleep apnea. Please watch the (fairly entertaining) video lectures of neurologist Stasha Gominak, MD on YouTube. She's not selling anything. Sleep medicines will only blunt the symptoms. Seriously, before you fill the script...http://www.youtube.com/watch?v=h7cbBB1c0IM Link to comment Share on other sites More sharing options...
dcmom Posted January 31, 2013 Report Share Posted January 31, 2013 hey tin- You know, I have come now to look at PANDAS first, for any health/ emotional or general issue with my kids, BEFORE looking at other things. General docs can always put a symptom neatly in another box- but for us, it is always pandas, and it presents differently sometimes. For us, these mild issues have always responded to either abx and advil (for 5 to 7 days) or steroids. Certainly worth trying one of these short measures first, before a long term med. Good luck! Link to comment Share on other sites More sharing options...
tln21572 Posted February 1, 2013 Author Report Share Posted February 1, 2013 hey tin- You know, I have come now to look at PANDAS first, for any health/ emotional or general issue with my kids, BEFORE looking at other things. General docs can always put a symptom neatly in another box- but for us, it is always pandas, and it presents differently sometimes. For us, these mild issues have always responded to either abx and advil (for 5 to 7 days) or steroids. Certainly worth trying one of these short measures first, before a long term med. Good luck! Hi dcmom, You and I definitely think alike My first thought whenever something is going on is PANDAS first. I have decided not to give him the trazodone and am awaiting a call back from his pediatrician to see what other options are available. I'm going to ask for steroids for the headaches and see what other remedies might be available for sleep. Thanks for your response. It means a lot when you can discuss with other parents who understand. Thanks again Link to comment Share on other sites More sharing options...
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