I just got my daughter's medical records dating back to '00 when all of this started. I can't go back in time, but boy do I wish I could!!
The signs and symptoms were there all along. Even things I didn't remember. I feel so bad for not putting it together sooner.
I know I can't beat myself up, and it's not really my fault. I really trusted that the doctors were more intelligent than me and knew what was best for my child.
Life could be so different right now if I had known the true cause of her many symptoms.
I'm just rambling here. Nobody could understand how I feel except here. So sad!
Posted by aperture (Member # 34822) on :
I hear ya kidsgotlyme!
We cannot go back. Thankfully, you now know and are taking action.
That thought gives me a lot of peace because I know so many kids are out there suffering and their parents have no clue. (I was one of them just a few months ago)
Also, thankfully, your daughter won't have to grow up still sick and have to figure it out for herself. She has you advocating for her!
Posted by poppy (Member # 5355) on :
Yes, I have had that feeling too. If only I had persisted in trying find out the reason for my swollen knee, had seen the tick and associated the red mark with lyme disease. Had access to more info about lyme disease. Accurate info! Then I would not have given up in disgust at the doc who told me my knee wasn't swollen, take a diuretic.
Fast forward almost three years, roof falls in on me....seizures, myriad symptoms.
Posted by randibear (Member # 11290) on :
it's not what you did in the past that counts, it's that you are doing it now, helping her all you can.
some never see the light.
Posted by lpkayak (Member # 5230) on :
i feel that way about my mom...and how she suffered and died...without real dx and tx...but i have to let it go and do the best i can today
its not our fault...hopefully what we all go thru will help those to come
maybe our grand kids and and great grand kids wont have to deal with this
Posted by jackie51 (Member # 14233) on :
I didn't know either. What is so obvious to us on Lymenet now other folks never get or get too late. If I hadn't been sick all those years, my children might not have suffered as long.
Mine are getting better, one is ready to get off meds. The other one is definitely on her way. I felt good today without the weight of their world on my shoulders.
It's a learning journey and we do our best. And, yes, the folks here really understand. My lyme doc understands too, thank God for that.
Posted by kidsgotlyme (Member # 23691) on :
I don't know what we would do without each other Posted by Nicole_Denise (Member # 20620) on :
Oh boy, don't go beating yourself up!!
I can't BELIEVE I took so long to realize something was wrong- I was falling asleep at work, sleeping 18 hours a day, forgetting people I'd known for a year...and I wrote it off as just stress and fatigue from school!!
second-guessing does nothing. Now you know you can fix. Your daughter is lucky you figured this out and are supporting her. I imagine with the lack of info about Lyme disease many children are undiagnosed for many, many years or possibly their whole life.
Posted by kidsgotlyme (Member # 23691) on :
I was just so surprised at a lot of things I had forgotten about. When you read it all at once, it's really shocking!! I had been wanting to get her records for a long time now so I could share it with her LLMD.
Posted by kidsgotlyme (Member # 23691) on :
We really did have a great pediatrician. I'm quite sure that if he had known anything at all about lyme disease, he would have helped us.
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