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Need to vent and say Hi


Char

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Hi everyone, I have not been on the boards for awhile. But I have been thinking about you all. I have not been on here for awhile because my son was doing okay and I decided for my own sake to enjoy it. My son still ticced during that time but it was not constant. So I was doing pretty good with it and started to enjoy life again. Even though my son ticced it was not a big stress for him or me. I felt happy to have this time and enjoy my family again. Don't get me wrong I knew this probably would not last. Well last night my son started a new vocal tic. A sucking in with his mouth and it's pretty constant. He did not go to school today because of other reasons.I am scared to send him tommrow. I have been dealing with this for along time-years. More motor than vocal. So now he has this vocal. I am scared it will not pass like some of his other tics he has had. Everytime he gets a new tic. It's like a punch in the gut for me. I have a hard time dealing with life. I have tried so many things to help my son. He's on supplements, strict diet. He was in the pandas range on Cunningham test but tried antibotics and didn't make a different. I was hoping I could find that one thing to really help my son, like others have on here but I haven't:(

 

I guess I just needed to vent. Why does this have to be so hard??? My oldest daughter has diabetes and that is not as stressful as this. Diabetes can be controlled, way easier for me than my son having tics. I often think in my sons good ticcing days this isn't so bad then BAMMM, new tics- and my aniexty goes up. I pray everyday that my son will someday outgrow most of his tics or will find that one thing that really helps him. How are all you doing and your kids doing with tics? Somedays I wish so hard, I could get off this roller coaster. I look at my friends and their kids are healthy and no tics and I think how nice it must be, not to be on this roller coaster ride. Sorry for the not so happy post. Would love to hear from you all. Char

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Hi Char,

Yep, this was me about two weeks ago! Tics were at an all time low for quite a while and then sudden big increase=tailspin for mom. His ended up being viral and possibly due to full moon, but regardless, I had that fear come creeping back. What if it doesn't wane? What did he have? etc. I guess what's getting me through is that his waning is more obvious and longer lasting and triggers are generally getting easier to find...even after 4 yrs. I find we are still finding the odd one we were unaware of. I would like to think that next time he waxes I will be able to remind myself that he has been doing so well and seems to wane withing a week or so, but that week is usually torture, so I'm sure I won't have any control of the anxiety that follows. So hypocritically, I say remind yourself of how far you've come and expect the bumps but try not to panic (at least for a week or so :) )

 

Take care and good to hear from you again!

 

Megan

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