mmiglio Posted June 9, 2015 Report Share Posted June 9, 2015 We finally met an LLMD today (Jemsek Specialty in DC) who has given us a good plan and some hope. After six weeks on abx we are basically treating my daughter for co-infections due to the extreme herx reactions she has had with little improvement of her OCD symptoms except when taking round the clock advil. We are trusting her to drive the bus of our treatment plan rather than a PANDAS physician. My DD12's OCD symptoms are so bad right now, however, that the dr wants to put her on an SSRI to calm her anxiety down a bit. She is suggesting a low dose Luvox. After searching the forums, I am not encouraged. Has anyone had good luck with Luvox? And can you tell me what the side effects were? I see a lot of reference to things like "Luvox was awful for him; made things worse" but I'm wondering in what way things were worse and what was so bad. Right now she is afraid of everything all the time. Her anxiety is so high she makes herself nauseas and then it gets worse b/c throwing up is her worst fear. She barely eats or drinks. She has to closely examine everything she touches or uses like toothbrush, hair brush, medicine, food. She refuses medication most days. She has bouts where she fears there are bugs crawling all over her and hits herself and scratches and/or throws things. She wants to start a pulsing protocol of zithro, Bactrim SS and minocin (sp?) three days a week for two weeks and then off for a week. But first we want to control her OCD which I am all in favor of. I'm normally not a pharmaceutical person but she is living in such fear right now, and it, as you know, is controlling our lives. Anyway, your thoughts on Luvox would be most appreciated. Thank you! Link to comment Share on other sites More sharing options...
kakrpa Posted June 9, 2015 Report Share Posted June 9, 2015 I'm sorry to hear your DD is struggling so much. I too at one point (age 22) decided in my anxiety/ocd journey to give rx a chance. I'm forever grateful for it too. No one WANTS to take medicine (I barely EVER went to the Dr before all of this), but u have to decide which is the lesser of the two evils so to speak. I was started on lexapro and it helped greatly,but I was also a young adult at that point so can't speak to which med would be best to try. Keep us posted? Link to comment Share on other sites More sharing options...
Wombat140 Posted June 9, 2015 Report Share Posted June 9, 2015 Hello, did you see the SSRI thread I started recently? Somebody gave me some detailed instructions about what constitutes a "low dose" and slow enough increase for a patient with PANDAS. Worth taking a look at. I did some looking up and confirmed that they fall into two groups - ones that conventionally start at 20 mg (fluoxetine/Prozac, paroxetine/Paxil, citalopram) and ones that normally start at 50 mg (sertraline/Zoloft, fluvoxamine/Luvox). For the 20 mg ones, if it's PANDAS and you're playing it really safe you start at 2 mg and for the 50 mg ones like Luvox, 12.5 mg (again that's the really careful dose, some PANDAS kids get away with starting at 25 mg without side effects, but some find it too much.) mmiglio 1 Link to comment Share on other sites More sharing options...
PowPow Posted June 9, 2015 Report Share Posted June 9, 2015 my daughter's luvox experience was disastrous. however, it was not the"go slow and start low" dosing recommended by Dr Murphy. we have found some help from OCD using clomipramine. my daughter has been on it for a few years. clomipramine can also have a slight anxiolytic effect, so that may help her too. mmiglio 1 Link to comment Share on other sites More sharing options...
sarojane Posted June 10, 2015 Report Share Posted June 10, 2015 Search posts about High CBD Hemp Oil (no THC, not psychoactive), there have been some miraculous improvements with some kids and their OCD. Less risky, no side effects. I would go the path of least harm before using all of the psych meds. Often times, you start with one and then have to take another to control the side effects and so on and so on and so on. CBD oil is anti -microbial as well and anti-inflammatory. The only thing that has helped my daughter's anxiety. Link to comment Share on other sites More sharing options...
mmiglio Posted June 10, 2015 Author Report Share Posted June 10, 2015 Search posts about High CBD Hemp Oil (no THC, not psychoactive), there have been some miraculous improvements with some kids and their OCD. Less risky, no side effects. I would go the path of least harm before using all of the psych meds. Often times, you start with one and then have to take another to control the side effects and so on and so on and so on. CBD oil is anti -microbial as well and anti-inflammatory. The only thing that has helped my daughter's anxiety. Awesome! Thanks for this. I read a very hopeful thread and am going to buy some of the oil today. Can I ask how much does your daughter weigh, and what dose are you giving her? My dd is 12 but only weighs 56 pounds. We want to start low, of course. Link to comment Share on other sites More sharing options...
sarojane Posted June 16, 2015 Report Share Posted June 16, 2015 Sorry I just saw this. She is also 56 pounds. We worked up to 15 drops 2X a day of the regular high cbd oil, not the silver. Hope this helps. Link to comment Share on other sites More sharing options...
sarojane Posted June 16, 2015 Report Share Posted June 16, 2015 Bluebird hemp oil. mmiglio 1 Link to comment Share on other sites More sharing options...
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