T_Anna Posted September 9, 2013 Report Share Posted September 9, 2013 We have a phone consult tomorrow. It's 5 weeks post PEX and 2.2 weeks post HD IVIG #3. I know that it is too early to give up on the above therapies. DS has made baby steps, and at the same time huge regressions, in the past week. He has shown that he has amazing ability to share in his brother's happy moments and been a complete jerk ruling the household and his siblings. He has survived the beginning of the high holidays when his life line of two close friends were away, we do not use electronics...instead he read comics, the newspaper and humorous books. We are exhausted. Tomorrow is the first day of school and he is still very stuck (dirty, homebound, etc). It is so hard not to constantly check his progress or get depressed that there may be zero progress. A few questions: 1. Should we try a new abx while we wait? We have never tried Minocycline and haven't done Clindomycin/refampin since last winter. 2.immune suppressants - should I start looking into that next, if ivig&pex are only step 1? 3. HD steroids? Any other suggestions? He is extremely therapy resistant. Thanks for reading. T.Anna Ds15 Link to comment Share on other sites More sharing options...
LNN Posted September 9, 2013 Report Share Posted September 9, 2013 I don't have any good advice to offer but wanted to wish you success with the consult. I hope you get some good guidance! T_Anna 1 Link to comment Share on other sites More sharing options...
airial95 Posted September 9, 2013 Report Share Posted September 9, 2013 How do you track his progress? Do you use a log or journal? We found that using a numerical logging system every day helped us not only stay objective, but effectively measure progress. Grading each symptom 0-9 every day, we were able to track progress clearly. We found that often times on days when we were particularly stressed, exhausted, over it all, it would feel like we haven't gotten anywhere and everything we were doing was a complete failure. But then we would go and look at his scores for the day and realize that wasn't really the case. While he may have had a meltdown, it only lasted 20 minutes and he was able to resume his normal activities afterwards - and it was only rated a 6 on his scale. Where previously, the meltdowns would've lasted hours, and even after they ended, he couldn't resume the activity that started it all without triggering another meltdown (that would've been a 9). Because of our (completely understandable) emotional exhaustion, that shorter tantrum may have felt like a 9 in the moment, but when scored objectively and compared to the past - we could see that we were actually making slow but steady improvement. On days when I would particularly feel like we were failing him - I would go back and look at the log entries from the previous months - it helped me maintain perspective of how far we have come, instead of focusing on how far we had yet to go. Link to comment Share on other sites More sharing options...
Hopeny Posted September 9, 2013 Report Share Posted September 9, 2013 I think i recall that your son had Lyme specific bands positive or ind, in this case I would think twice before using steroids which can exacerbate Lyme. Clindamycin, rifampin and mino are all used for Lyme so if I am remembering correctly about your test that may be worth a shot. Especially as the other treatments haven't had any significant impact. Link to comment Share on other sites More sharing options...
T_Anna Posted September 9, 2013 Author Report Share Posted September 9, 2013 I do keep a daily journal, but never got around to making it numerical/chart like. I will try to do put it together so that it's more of a spreadsheet. The truth is that overall there have been glimmers, but he is stuck in the bathroom again (his weekly ritual) and it just becomes so depressing. Hoping that we get some answers soon or something try. T.Anna Link to comment Share on other sites More sharing options...
airial95 Posted September 10, 2013 Report Share Posted September 10, 2013 I have an excel spreadsheet that we used, if you PM me your email address, I'm more than willing to share it with you. Link to comment Share on other sites More sharing options...
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