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my mom says I'm "obsessed" with this....aren't we all?


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My mom and husband are worried about me because they think I am obsessed with all this pandas stuff. Well, I AM!!!! Wondering if anyone else thinks about this from the minute they get up till the minute they go to bed. And every time they see their kid tic, or touch evenly, or even just wondering if every little thing is a tic or compulsion. There are so many rabbit trails to go down with this disease. I have been paralyzed and spinning with which one to take. Lyme? Well, which LLMD? Allergies? Well, allergist? DAN!? Scratch test? RAST test? Integrative docs IgG blood tests? Everything is so controversial, and not without flaw. And the reason I don't just go down every rabbit trail is because the more docs I take my dd to, the more she will think "something's wrong with me." I have managed to always talk to the docs in private about all her issues, without her being there, and then just bring her in for a quick exam. This is with the pediatrician, Dr. L (although because she only sees dd for 2 minutes, I think that's worked against us), second opinion neurologist, infectious disease docs. So at least I can say that while she must know that she has tics, she doesn't think she's "sick" and worry about THAT every time she tics. I may be wrong here doing it that way, but that's kept me from running her all over the place to see numerous docs. I do realize that this has also limited me in getting anywhere with this. OH, Dr. L also said that allergies (I asked specifically) would NOT be a player in pandas. That they truly just cause a little "blip" in the immune response, and would not impact pandas. Also, as far as testing my dh and I for strep carriage, that "it's never the adults...don't bother."

 

So yes, I am OBSESSED with this. Just wondering if I am alone in this....maybe I should check myself into a treatment center. But as a momma bear, I know when I get out, pandas will still be there, affecting my baby. No, she's not non-functional. But she is NOT who she was over a year ago.

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To some extent, yes, we all are obsessed with this, but not just because it's PANDAS. It's because we're parents, and we'll do anything to protect our children and keep them from harm.

 

Next time your mother or husband question your dedication, I would ask if they would feel the same way if it was Cancer (heaven forbid) that your daughter was fighting as opposed to something "invisible" like PANDAS? I'm sure their answer would be different.

 

With that being said - I think that we ALL need to learn to take some time for ourselves to try and recharge from the fight. The longer I look for answers and options, the more I find myself questioning every step we take. Once my husband saw how this was running me down - he insisted on "girls night" at least once every other week. Most times it's just me and a book at Starbucks for a couple of hours, but it has worked. It's kept me in perspective and kept my "crazy" to a minimum.

 

I know it's easier said than done, but I firmly believe that each of us taking our own "me time" if we can is actually in the best interest of our children - especially if we don't have spouses/support network that are as passionate about our crusade against PANDAS.

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I will admit I can get caught up in things so I do take long breaks from here unless I really need to figure out something. I do try to give feedback too, but I can't come daily and read about it all the time because I KNOW I can become obsessed. when I get that way I tend to develop a lot of anxiety, and the stress gets to me and I start losing sleep. So I have to stay away sometimes and not constantly dig into research and treatments. I feel I am treating my son, and trying my best to heal him, but I can't spend the whole day focusing on it because it isn't healthy for me and in turn not good for my son either. I do try to keep our lives as normal as possible and not freak out about germs etc. I feel I will do him more harm keeping him out of school or out of situations because I am nervous he will be exposed. So we deal with the flairs, I read once or twice a week, and try not to think about it all the time. I could easily get sucked in and I know that would be bad. Some may say that means I am not as dedicated to healing my son, but I do think I am doing all I can. I want him well more than anything but I can't let it rule our lives either. It is hard to find that balance and during flairs it is even harder. I am sure you are not alone! I just consciously have to avoid getting overwhelmed by it all. ((hugs))

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Thanks ladies......I find that even when I am not on the computer, I am still thinking about it. I think it's better when I am taking steps/action to do something. But do you find that you think about it all the time?

 

Again, I can get in the mode pretty easily, so I have to consciously make myself think about and do other things. Quite a few years back I used to have panic attacks and anxiety issues, but I really learned to change my way of thinking and take more control of my thoughts. I slip sometimes, but I think this helps me know when I am getting in too deep and get myself back out. A change of scene and some time for myself is a HUGE help. heck, I will even go to a movie by myself. It is SO important. So if you are thinking about it all the time, I think you might want to try and get some time for yourself and change your focus occasionally. It does help the kids, too! I think being a caregiver of someone with special issues can be very exhausting. But taking it one day at a time and not forgetting to take time for yourself, and have fun, is very important.

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I think it's easy to allow this to consume your life, but I also hear your family telling you that they're worried about you and that this may be crossing the line between commitment to finding answers and into a degree that could be effecting important areas of your life. I am all for not stopping until you get the riddle solved. I am extremely guilty of having insomnia at 2am and being on this PC. I have lost balance more than once. I also paid dearly emotionally. My family and friends were telling me they were worried about me - and they were right. So I'm not criticizing. But addicts often don't see what everyone else around them sees. They feel they are "managing" when they are not. You may need to take some time to soul search and even if you feel they are wrong, they are telling you things have gotten out of balance. That at least a few hours of the day needs to be focused on the joys of "now" or you will miss - and maybe lose - what you cherish the most - time with family and small joys of childhood. Even in dark Pandas days, it's important to remind yourself of the gifts your child has and to find happiness in little moments.

 

I totally get the mamma bear thing. But having been here far far too long, I've seen marriages and families torn apart by losing balance and not listening when the spouse tries to communicate. Your family is giving you a message. Whether you agree with it or not, you may need to listen and nurture non-Pandas aspects of life - or what you end up with may not be the thing you've been fighting for.

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OK then, call me obsessed also. There is NOTHING more important to me than getting my little boy thru this and PANDAS free. Yes, I lose lots of sleep when he has a flare-up and I have had many broken hearts over the last year. It has become an all-encompassing part of my life to help my son because I am his mother and it is my job. There is no way that we would have gotten this far if I had not become strategically dedicated to finding answers, finding help and wiping this illness out. Certainly no medical professionals were going to help me here! And you know what? We fall back often, but in the overall picture, starting from his acute episode last Fall, we are winning. Big.

 

Take care of yourself, try to rest and find personal time and do what you have to do to fight the good fight. I will continue to maintain that my son will be fully recovered, sooner, rather than later. I wish this for all of our beautiful kids.

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It is very easy to get caught up in all this in this in the name of helping our children. I give myself PC free days, read fiction novels, go to the beach, spend time with my children plus work is a distraction.

 

The following site just had a very recent valid blog on this very topic- about the disease becoming the idol.

 

Take a look at her site- can be very uplifting to see things from her perspective.

 

dhttp://pandasvaccinesandmore.blogspot.com/

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My mom told me that at first too, until she noticed the huge behavioral changes in my son when he was on treatment of abx, etc. I think most of us have been told that by someone or another along the way. This used to bug me a lot,and still does once in awhile, but I just have to tell myself that I am a mom and have to be an advocate for myself and my children. Hang in there and follow your instincts! It is super hard when a loved one is going against us or our instincts as moms. Maybe if you feel you are doing this too much, take a step back and try to conserve your energies for the most important at the time. I find limiting myself to the computer to once a day on this stuff and changing my thought pattern if I get too "obsessed" with it. It is hard though, when you are watching your child suffer, to not want to focus on it all the time because it is your child!

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I am obsessed, too. How can you not be? Every time my son coughs, I freeze. Every time his pupils seem unnaturally dilated or he walks around stomping/clapping a pattern, I freeze. In early March, my son suddenly started coughing...a dry, racking, unproductive cough...all day long, for two months, every 10-20 seconds. Our pediatrician seemed to think I was suffering from Münchausen syndrome by proxy or hysteria. So does my husband, friends and family. During one visit to the pediatrician, she told my son to "just stop coughing", prescribed muscle relaxers and suggested that "mom might benefit from these, too." I was shocked. Then, I thought maybe she is right. I took one. It didn't help because then I was worrying about whether I would miss some new symptom that would help us figure this thing out. I guess that was obsessive, too.

 

By early May, the pediatrician finally allowed that my ds cough could be a tic and that he might have PANDAS. The good news is that he is doing fine, now. No cough. Was I obsessed enough at the time, I think not. But, on the other hand, we all need a break. Whether it's a girls night out, or a good book. Actually, I just remembered, I did take a break in early April. How could I forget. I went for a girls weekend at a spa to celebrate a dear friend's birthday and upcoming wedding. My friend is a young widow engaged to a young widower, both with young children. It was a miracle that they both found each other. There was a whole crew of us and we couldn't wait to celebrate! I arrived at the spa on Saturday, we had a great time on Saturday night, and then as we were sitting down to breakfast on Sunday morning, my mother called with the news that my father (who is the picture of health) had suffered a major heart attack. The good news is that he survived and is as spry as ever. Life is full of twists. A great night at a spa with friends, a near death experience for my father, that was enough of break for me. I couldn't wait to get back to my son!

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A thought just occurred to me, we hear alot on here that our own mothers are often the ones telling us we're obsessed, or overreacting, or in our case, it's "the terrible twos" and "boys are just harder than girls".

 

But could this be their defensive reaction as well? No matter how old we get, we are their babies still, and they don't want to see us suffer any more than we want to see our children suffer. Could it be they're downplaying what we're so worried about as a mechanism to try to keep us - their babies - from hurting?

 

It just came to my mind as I was reading through this thread...it may make me react a bit differently next time my mom forgets to give him his meds or says "boys will be that way" (although, probably not :P )

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