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I NEED to let my guard down, but scared to......


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Hi everyone,

 

I am reaching out for my own sake this time. DD6 is doing great :D . 2012 at age 4 major onset of overnight tourettes, scared of everything with huge separation anxiety: diagnosis probably TS+. 2013 prophylaxis erythromycin started and doing better with a few minor flares. 2014 - 95% good throughout the year with only some break through minor abnormal movements, anxiety and a bit of OCD (no more than me!) but very manageable.

 

I know this sounds good. The real scary stuff is 2 years behind us. DD has made so much progress and is getting quite the social butterfly. Me on the other hand....... overweight, shopaholic who can't seem to enjoy life like I used to. Constantly worried of a major relapse. Looking for it, still googling and when I'm not doing that I'm eating food when I'm not hungry and buying things I don't need and can't afford. I know I've got to sort myself out.

 

What I'm looking for is a 'meaningful' affirmation that DD really could have the worst behind her. Is this possible? Could this now be my little girl who will grow up a happy and 'normal' child? Friends and family are supportive but don't really understand the true unpredictable possibilities of this terrible disorder, nor the effects it has on the parents' state of mind. I want to be free of the horrible dread of seeing my daughter not able to function but I am struggling to do it. Maybe its the thought of letting my guard down only to have to fall even further next time.

Edited by lydiasmum
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Hi lydia. Been there done that! What worked best for me was switching my perspective. What you dont know is, will she have another flare; you dont have any control over that to some degree unfortunately. What you DO know is that if she does flare, you can and you will handle it. If you think about it, that knowledge is very empowering. It seems that your dd is moving forward and maintaining health. That is great news. Focus on that as well. Pandas has the capacity to take hostage of ones peace of mind...dont give it that much power...all the worry in the world will have no influence on what is yet to be.

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This sounds like Post Traumatic Stress. Many parents on this board can relate, including myself. I think it is the idea that we are always waiting for the "other shoe to drop" and thinking that things are going to go bad very, very quickly. We clench up in anticipation of that incident that may or may not happen. Therapy can be very helpful, as can a supportive spouse, a new or rediscovered hobby/passion.

 

I still struggle with this, but I am trying to take better care of myself. Talk to your personal physician and make sure that all of your health needs are being met as well. My being in better health and sleeping better has been a huge bonus for my kids and spouse.

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My heart goes out to you. My DD is doing so well too, but still has minor flares and sleep problems. I have eaten sooooo many chocolate chip cookies in our journey :) I imagine all that you have done for your DD has helped strengthen her immune system, and she is on her way to being completely healed. Have faith! Say some prayers and try to substitute a long walk or some other type of exercise for your shopping or binging. Exercise makes you feel better. Better yet, if you live near the water, go for a walk on the beach and get the healthy fresh sea air. That seems to make all of us feel better.

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I ditto last two comments as well...ptsd seems to be other ugly side to this disorder...did not mean to sound overly pragmatic....and trust me, it can get me down/overwhelmed as well....I just know that when I have let this disorder get the best of me, I am no good to myself or others....

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