looneymom Posted September 23, 2015 Report Share Posted September 23, 2015 Tyler is doing well since he had his port out. No backsliding. He is maintaining. The day of his port surgery and the day after (last Monday and Tuesday) were his rest days from exercise. The week before he exercised 3 days on, one day off and three days on. We planned this in advace so he would not have to take off anymore than 2 days off of exercise. He was able to continue with his exercise program W-Th-F after his surgery. He took this last weekend off and started back up with his exercise program again this week without any problems. This is so different and so exciting to see him be able to maintain an exercise program. Tyler has also been able to drop down on his dosage of extended release clonidine. He is only taking .1mg. The LDN seems to be helping with sleep issues and I never thought I would ever be weaning him off the Clonidine. However his doctor wants me to hold him at this dosage for a while and start lowering down his zoloft dosage in another week. If Zoloft is causing his tremors, I will be glad to get rid of it also. Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 24, 2015 Report Share Posted September 24, 2015 All so great, Rachel! Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 24, 2015 Author Report Share Posted September 24, 2015 Tyler did a modified leg march today. I had to figure this out because he cannot march with his legs while sitting in a chair. However, he can lay down on his back, slide his leg up until knee is bent and then lift his leg off the floor. No tremors. Finally seeing some more brain and nerve signals connecting.Tyler had tremors before he started Zoloft, but I had no idea that a side effect of this medication is tremors. Keep learning something new everyday. Hope everyone is having a good day. Quote Link to comment Share on other sites More sharing options...
corina Posted September 24, 2015 Report Share Posted September 24, 2015 Oh wow, this is really great news, thanks for letting us know Rachel! You go Tyler, we're cheering you on! Quote Link to comment Share on other sites More sharing options...
p8d Posted September 29, 2015 Report Share Posted September 29, 2015 So happy for both of you.P Quote Link to comment Share on other sites More sharing options...
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