T_Anna Posted July 17, 2014 Report Share Posted July 17, 2014 Took DS16 to LLMD yesterday. Switched him from rifampin/Azith to Ceftin/Azith. She said that CEFTIN was the closest thing to IV abx(??) DS weighed almost 92 lbs (5'6") and for the first time admitted that OCD was the real reason he doesn't eat (and admitted "I realize I have an eating disorder, I just don't want to be fat."). Sunday we learned that his thyroid is over active (was under active since the fall) so we stopped the synthroid and thyroid supplement. His doctors believe that was impacting his appetite too) The LLMD said Lyme can affect thyroid numbers too. - If he is not eating because of OCD+thyroid issues, will treating the Bartonella help with OCD (since stopping the thyroid meds he seems hungrier BUT more tortured by it)? - Yesterday, was the first time DS16 shared with me how his OCD works. What happened was that he decided to buy an ice cream at the school cafeteria (summer school) and that was going to be his 1 thing to eat yesterday. He was really upset/frustrated that the ice cream was so tiny and now he "used up" what he was going to eat : ( - Is that a good sign, that he's sharing details of his torturous OCD mind? - LLMD said to stop the Augmentin, that Ceftin covers the same thing. Should I keep it on (didn't give this morning or last night), just for the anti inflammatory properties (to help him fight the OCD)? He wont take Advil. The LLMD handled the eating issue well and DS ate dinner (after crying to fight the OCD). This morning DS is angry that he ate last night and also upset that he's upset about eating last night. Any responses appreciated, already got a text at work that from him "It's all back!" He's in summer school since he was homebound with severe OCD since January 2013-April 2014. Thanks all, T.Anna Link to comment Share on other sites More sharing options...
searching_for_help Posted July 17, 2014 Report Share Posted July 17, 2014 My dd's eating issues and OCD are the same way. All her intrusive thoughts are around food or exercise, or how our schedule might impact her food or exercise. She has had this for 10 years of more. We haven't found anything that will help. She's still upset that she ate a big meal on Sunday. The thoughts that she shouldn't have eaten it just won't leave her head, and they literally torture her. Needless to say, she's not eaten much since then. So I'm interested in whatever ideas are out there, too. One thing that really gets me, is in EVERY other area of life she is brilliant and completely rational - more so than me! She absolutely knows her thoughts about fearing food is irrational, but the panic that happens is not something she can shake off. You can literally see the fear in her eyes, like a caged animal. I'm so sorry your son is going through this, too. Link to comment Share on other sites More sharing options...
T_Anna Posted July 18, 2014 Author Report Share Posted July 18, 2014 thanks Searching for Help! Today he is grilling and has made lists etc. I am just hoping he will be content. He seems a bit more mellow so maybe the Thyroid numbers were impacting him. Thanks, T.Anna Link to comment Share on other sites More sharing options...
putting together the piece Posted July 18, 2014 Report Share Posted July 18, 2014 Addressing the infection correctly seems to be a key component in fighting the OCD anorexia. For my child the first thing that had an impact was Minocycline, his food refusal and lack of appetite were both improved with the addition of that abx. But we also had to address adrenal insufficiency. He is also on Ceftin , Crypto- Plus , Cumanda, and a boat load of suplements. Link to comment Share on other sites More sharing options...
T_Anna Posted July 18, 2014 Author Report Share Posted July 18, 2014 Maybe Ceftin will be the right abx for us, we've tried so many. We are also on a ton of supplements, but every time I think of scaling things down I remember why we added it : / T.Anna Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted July 18, 2014 Report Share Posted July 18, 2014 t_anna -- have you tried mino?(We've been around long enough that we've seemed to have tried all of them, including ceftin. Mino seems to be the new thing. When we first started down this road in oct 2012, it seemed augmentin was the gold standard) Link to comment Share on other sites More sharing options...
T_Anna Posted July 20, 2014 Author Report Share Posted July 20, 2014 We were on mino for a long time, since it passes the BBB it seemed like the right choice, but it did not seem to help. I'm glad to report that he has eaten every day this weekend (only one meal, but it's a start). So maybe it was the thyroid condition (retesting next Monday), or the Ceftin. Started supplementing the mito issue so hoping this week brings more improvements. Thanks as always T.anna Link to comment Share on other sites More sharing options...
searching_for_help Posted July 21, 2014 Report Share Posted July 21, 2014 T. anna - please keep us updated. Hoping for the best! Link to comment Share on other sites More sharing options...
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