browneyesmom Posted July 19, 2011 Report Share Posted July 19, 2011 I haven't posted here in a long time. Most of the last several months, I have been in the fight of my life to save my daughter, who just turned 12 years old, end of May. Many of you who have been here a while will remember that she was diagnosed about 2.5 years ago, remitted for several months after T/A, then crashed again when she caught strep again in Spring 2010. By Christmas 2010, I had to call 911 five times in 2 weeks. Had to call? Yes, had to call. Why? She was having daily rage episodes lasting up to about 3 hours (attacking me (hitting, kicking, biting, spitting, scratching, pulling hair... you name it, she did it... and yes, sometimes with that guttural "I'm going to kill you." voice) the entire time and strong as an ox - I honestly thought this petite 70 pound girl might actually overpower me, the adult - paramedics who arrived on the scene were shocked at her strength and it took 3 of them to restrain her, to give an idea). Frightening thrashing followed the rages, then she would go limp for a while before coming out of it... sort of - she often had hallucinations after and sometimes went into another episode. In other episodes, she did not seem to hear us as she repeated one word over and over again, sometimes grabbing at wires or staring out the window or crawling under furniture, seemingly unaware of our presence. Another time, after a rage episode where she did not seem to hear me, she laid down on the floor and silently wept. So many painful images are burned in my memory... thankfully, not in hers. She does not remember most episodes. I see that as a blessing. It was very scary to see what had been a previously healthy, intelligent, happy and loving child in this condition and it has been the fight of my life to save her. Around Christmas, I honestly did not know if we'd get her back. I would have to describe her condition at that time as psychotic much of the time and I did start to wonder if this disease had claimed my beautiful, precious child. Would it be bragging to share that as sick as she was, I didn't think there was any way she would complete the school year; however, she not only finished (core classes only - we had to exempt her from the electives), she made straight A's the final quarter, completing the year with a 3.7 GPA... I'm still trying to get my head around that. She pushed through so many times when she wanted so much to go back to bed, but worked hard to complete her work and she did it. In many ways, I think I'm just starting to feel the brunt of it and sometimes when she is not clinging to me now as she did constantly for so many months, falling apart in tears now that she is finally improving; yet, I am bracing for another school year and dreading more strep. I'm sure many of you can relate to that... getting some things in order here before that strikes again. I wish I could say she is 100% now. I can't. She is probably about 85% now though and for that, I am deeply thankful and feel hopeful again as her brain takes it's time to heal. I haven't seen one of those rages or psychotic episodes in several weeks. Sensory issues remain, as do physical stamina issues, contamination fears and a few others. We'll be attending the IOCDF Conference that I hope will give her some tools for those things and she remains in counseling and under the care of doctors. God has been so good to us on numerous levels through this and I believe He will use this for good, in some way. I want to encourage others who are just coming into this battle and are still in so much shock, especially when you read about those of us who have been off the cliff, back again and off the cliff some more with new strep infections. I remember those early days and endless nights, days when I was so certain antibiotics would be all my child would ever need, that we would NEVER get to the point of needing IVIG (she's had 6 high dose infusions at this point), that we never wind up in the hospital for this (haha... so naive, I was - 5 times to ER and a hospital admission of nearly a week at Christmas), that we would never have to pull her out of school (she was on Home-bound Ed from mid-December through the end of the year). I remember... my denial. I don't write that to discourage you... but to encourage you to be aggressive in seeking treatment early whenever possible. For those who are fighting insurance, doubting doctors and other monsters, hold on. We've been there. There is hope. Your child is still in there and your efforts to save them are not in vain, even if you don't see it yet. Don't ever forget that. Link to comment Share on other sites More sharing options...
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