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I just wanted to thank everyone for all the support and information over this last year. We really would have been lost without you!! My DS is not yet back to "normal", but we have been able to sort out a new normal that keeps all of us relatively sane! We are still peeling back the layers with my son as suggested by many of you. We have found some things that have definitely helped and he has never gone back to that very dark place he was one year ago. Sometimes I feel like we are barely holding our heads above water, but at least it is ABOVE the water and we are not drowning! He had a terrific summer but now we are fighting some nasty Myco P. (Just in time for school and a new teacher, yay!) We still have many avenues to explore and I feel hopeful that even if it is two steps up and one back that we are moving forward. I feel very fortunate to have found you all. You are all amazing moms (and some dads too!) Checking in with this forum everyday gives me ideas, strength and momentum to keep moving forward even when I am feeling defeated or exhausted. YOU GUYS ROCK!!!!

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I am so glad to hear that your son is doing better. That's awesome. Just want encourage you to really stay on top of the myco p. It rarely goes away with a standard round of antibiotics, even though that is all that most physicians want to prescribe. Keep following your titers and make sure that they go back to normal. I would encourage you to do some research on myco p. as most physicians aren't up on appropriate treatment. If you are seeing a PANDAS specialist or an LLMD your probably in good hands. Make sure you insist on follow up titers. Best of luck.

 

Dedee

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My kiddos symptoms started a year today, one day after your kiddo. It took me a while to find this forum.

 

At least with the current myco flare, you are breaking in the teacher when your son is not at his best so it is easier for her to grasp the scope of the issue rather than if he was doing great and you trying to explain to her what not good looks like when she has never seen it.

 

Keep trucking, and I am glad you are not drowning.

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I am so glad to hear that your son is doing better. That's awesome. Just want encourage you to really stay on top of the myco p. It rarely goes away with a standard round of antibiotics, even though that is all that most physicians want to prescribe. Keep following your titers and make sure that they go back to normal. I would encourage you to do some research on myco p. as most physicians aren't up on appropriate treatment. If you are seeing a PANDAS specialist or an LLMD your probably in good hands. Make sure you insist on follow up titers. Best of luck.

 

Dedee

 

Thank You Dedee! We are doing the titers and my regular Ped, who gets PANDAS gave him 3 weeks of Azith- I have an email in to Dr. M who will advise us what to do next- probably will extend the Azith. My ped is so great- she does not have much experience with PANDAS but she is willing to help us out while we get advice from Dr. M. I feel very blessed.

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At least with the current myco flare, you are breaking in the teacher when your son is not at his best so it is easier for her to grasp the scope of the issue rather than if he was doing great and you trying to explain to her what not good looks like when she has never seen it.

 

Keep trucking, and I am glad you are not drowning.

 

Thank you! And yes the teacher is definitely getting a taste of the issue! She has been gradually improving with dealing with him and has used strategies and visuals that I have given her. My DS has ADHD symptoms, (heavy on the HD!) so that is the hardest for her. But we are getting through it. I told his teacher that at least he does not need to run to wipe his hands on the wall whenever someone touches him or wash his hands 25 times per day. (last year at onset). I think she'll take the ADHD stuff! ;)

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