MPatti Posted April 4, 2014 Report Share Posted April 4, 2014 First, let me say that I know I am lucky. My son (age 5) was diagnosed with PANDAS less than 3 weeks after onset of symptoms. He is being treated by Dr. L and we are seeing Dr. B for a consultation next week. He has come a long way, but still is not completely symptom-free. I have spent so much time on this forum reading others’ experiences and stories and my heart breaks for all of our children (and for us parents too). This forum has been the only thing that has kept me sane through all of this. But today I am really mad – I hate PANDAS so much. I hate that I watch every move my son makes and I live in fear that a new symptom is going to appear. Last week when I was taking my son to preschool he told me he was going to miss me while he was in school – I immediately felt panic – this wasn’t like him, he normally does not say he is going to miss me, he just jumps out of the car excited to be at school. He ended up being totally fine about going to school – he jumped out of the car happy and went on his way to his class. I ended up being mad – four months ago I would have thought him telling me that he was going to miss me was so sweet. Now instead of being touched by his sweet words, I felt fear. Today I yelled at him because he didn’t want to eat his food (his applesauce “didn’t taste right” and his turkey was “slimy”). The rational side of my brain knows that I put his Florastor in his applesauce for the first time and didn’t stir it well enough because I was trying to sneak it in without him noticing and I also know that getting him to eat turkey has always been hit or miss. But, my immediate reaction was wondering whether he is having issues with food now and I over-reacted when he wouldn't eat his food. I lost two babies before I had my son (turns out I have a blood clotting disorder). My entire pregnancy with my son (and also when I was pregnant with my daughter) I lived in fear that I was going to lose them. I couldn’t enjoy my pregnancies. Now, today, I feel like I am being robbed of letting my kids be kids. Kids can have quirks, they can be in a good mood or a bad mood, they can decide they dislike the food they loved yesterday, and they can miss their mom when they go to preschool. I know not everything is a PANDAS symptom. I just live in fear that I am again going to wake up one morning and my child will not be the same child that I put to bed. Sorry for the long and depressing post – I just needed to vent to those who would understand what I am trying to say. I am sure tomorrow I will have a better outlook – today has just been a rough day. Link to comment Share on other sites More sharing options...
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