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Advice on waiting


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So true!! But as I sit here and wait for some kind of response from Dr T, with test results from a week and a half ago...Its really hard to be patient. There is no doctor that I can go to here and so try as I might, I still find myself checking the phone, emails!!

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Hi - I think we're somewhat lucky in that our dd6 goes into full remission when not in epsiodes and our probable PANDAS son is seemingly doing well at the moment. This forum has been my therapy and life saver but I think I'm "using" it too much. It's like my got-to ritual! I need to wean and come on much less often than I do.

 

It's as though I can't let go of the fear of an impending episode and instead of just enjoying the reprieve from PANDAS I'm worried that I'll miss something, miss the cure (which I suspect a psychologist might say means that I'll have less control over the PANDAS in "1st degree relative with OCD" kind of way :) ).

 

dcmom - I can remember very clearly (picture it now as I type) thinking "please, don't let it happen to him too, I couldn't bear that", meaning my son. My dd though was comforted by the fact her brother may have it, so she wouldn't be the only one in the family. The thought of having to cope with 2 kids in a full blown episode is scary...

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When I was waiting for acceptance letters into graduate school (18 years ago), I drove myself nuts checking the mailbox, internet, and voicemail....checking the phone..was it still working...something must be wrong, I should have heard by now?

 

Waiting for doctor's appointments that are weeks away can be torture. Waiting for test results or doctor's replies can be torture. Waiting to see how your kid is going to respond to treatment is torture. Waiting for anything important has always been very challenging for me, personally. I'll only speak for myself, but this issue is my mini-version of OCD. This is my child's health, happiness and well-being, I know it is crucially important, but I have to admit; I'm having difficulty getting it out of my head! And I work with school-aged special education children-I'm seeing it all over the place! I'm smart and mature enough to get through work (although that is where I'm typing from right now, shhh) and run my household, ect., but I am clearly preoccupied by this disease and getting my kid the right help. Thank God strep et. al does not throw me into complete dysfunction!

 

I have put myself on a behavior plan and maybe you can to. A great book (NOT about PANDAS) can be a wonderful distraction. Perhaps others can suggest a real page-turner they have read lately? Limiting your "research" time and, yes, time on the forum will help break the cycle, make you happier and help "wait" time go by more quickly. Pick a project around the house you've been meaning to get done, say organizing photo albums, clothing or your "junk/storage" room. Whenever you notice yourself drifting toward the internet, research; redirect yourself to your "go to" project. Limit the number of times you are going to let yourself talk to your spouse, family or friends about PANDAS per day and stick to it.

 

I don't want to offend anyone, but I suspect many of us have a little of our own mild OCD tendencies we've utilized on our children's behalf to not take no for an answer and persist on getting them well; but the flip side of this trait we must actively manage and not let life pass us by while we were busy waiting.

 

We want all the kiddos to get well and healthy. We want peace and some normalcy in our families' lives. Does anyone else have suggestions, strategies, ect. they have utilized to obtain some balance and keep all of this in check?

 

I wish I had some advice for you. What is kind of funny is I am a school counselor. I am just so tired of waiting. For 7 months now I have been waiting. My son has consumed my life. I want him to be healthy but I feel like I am neglecting the rest of the bunch. I keep reassuring them this nightmare will be over soon. My kids ask me why is this happening to our brother. They are very emathetic but worried too.

 

On top of everything else we live in a rural area in NM so labs and exams have to be sent off. I am in the process of looking for a Pandas doctor and the nearest is 9 hours away. I agree with you. I have some ocd tendencies. My husband was watching Dr. Phil one day and he kept saying "hey that's you"

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