Wednesday, April 19, 2017
We have lift-off! The last two weeks have been a period of steady progress and my heart is full. I made some big changes to our treatment plan and something is working. She has color in her cheeks, her eyes are sparkly, she's happier, tantrums don't last forever, she's gotten dressed by herself for several days now! I am so happy I want to shout from the rooftop! And once again, I am reminded that parenting healthy children is infinitely easier than parenting sick children.
I stopped a lot of supplements and two of her three prescriptions, removing one thing at a time and watching for negative reactions. There were no improvements but nothing got worse either. I added a b complex supplement at a very low dose, and some other supplements and therapies. I also started managing flaring symptoms with a new protocol which worked beautifully against agitation and anxiety. After a week or so I was able to stop the flare protocol and she's been great!
I have been around long enough to know that this may be a short-lived phase, but I have also learned a lot about PANS, the immune system, exotoxicity, and the inflammation process in the body. I feel better armed to handle future flares.
I'm going to just throw caution to the wind and let myself be excited. I'm going to revel in the knowledge that I did something to help my daughter. I'm going to take advantage of this opportunity to breath, relax, and enrich our lives. Focus on enjoying the simple things again and appreciate that we aren't living in a constant state of being on guard.
Strenth. Love. Hope. Resilience. NEVER give up because the end game is priceless.
No Catchy Name...just more of the same
Saturday, March 11, 2017
I don't have much to report. We are still struggling. It is not the worst flare because at least she is...wait, never mind. I've learned not to jinx myself so I don't dare say it. But it is not the worst.
The mornings are just awful and as bad as I remember they were in those early months of crisis when she was five years old. I am trying so hard but I can't help her. I've grown more stressed and reactive. I keep picking myself up and creating all this optimism - I can't help myself - it's what I do. I think, "This afternoon will be different. We will just relax and hang out, have pizza and watch a movie", and before I know it all hell has broken loose. I pick myself up and then come crashing down. Hard. My daughter is screaming because I've asked her to take a break from something, and after 20 minutes of being really calm and patient I am suddenly not. I seem to have a lower level of tolerance and I am crying more.
I am so tired. I am so sad. I feel like this is defining our life and our family and their childhood. Her younger sister just watches all of this go on day after day. After a fun morning of playing outside before school it is time to go and my kindergartner is all buckled in when it starts. "MY PART DOESN'T FEEL RIGHT!" and we're off but standing still. She's been fixating on the part in her hair lately. An OCD fit begins and I feel helpless and hopeless. I sit, emotionless, knowing nothing I do or say will do anything but make it worse. "YOU HAVE TO FIX IT! FIX MY HAIR...NOW!!!" If I try to fix it, the rage will go on, get louder, and it may never ever end and we will be stuck in this car with the screaming for the REST OF OUR LIVES. That's how it feels in that very moment. So I either drive to school with her screaming and risk that she won't get out of the car when we get there, or I bring them inside and hope the change of scenery helps me to snap her out of it. We have only 10 minutes wiggle room to get to school on time. We unbuckle, she screams at me, we head inside, I close the door to the outside world again. What is my little kindergartner feeling at that moment; all ready to go to school and out of the blue we are in the midst of chaos, again. It breaks my heart in to a million pieces.
Very quickly I realize this isn't going to be over in 10 minutes, I can't get them to school on time, by little one starts crying because she just wanted to go to school, and I can not seem to hold myself together. I begin to unravel. I go to my room to focus and get myself pulled together. Pulled together for my kindergartner, pulled together enough to walk in to that school, and pulled together enough to try again and calm her down.
What is going through my little ones head now? Minutes ago, sitting in her car seat, happy; her shining eyes and that smile are etched in to my memory by the familiar look of fear that replaced it in an unforeseeable instant. To be driven because it is a fun change from taking the bus. This happy morning has turned in to a disaster and now instead of being at school before the buses arrive, she'll be 30 minutes late. Instead of chatting on our way to school she has to listen to her sister screaming and crying and carrying on. I can not seem to hold myself together for the pain and fury of it all. I quiet my voice and tell her it will be okay; that her sister will feel better soon, and that I will not yell. I'm sorry she has to experience this every day.
When they play they yell at each other now. Little arguments become screams - echoing the words shouted during meltdowns and ripping my heart to pieces. They are replaying it all, probably in an effort to work it all out. I want to do so so so much better for them. I want to help them cope and manage all these emotions. I want it so bad I can taste it and feel it but there are days I just don't have anything left to give. I sit and listen to their play and I can not go to them. Every failure on my part depletes my resolve and strips away just a little bit of my optimism. I hope this flare passes and gives us all some relief in time for me to regroup. I want to set a good example for how to handle big emotions and frustrations. I try so hard. Every single day I wake up and go through my plan in my head. Every night I vow to do better the next day. And in between I have wonderful moments and horrible moments and the beat goes on.
This is harder than anything I have ever endured in my life. This feeling that I am absolutely letting my children down. I can not make her better. I can not fix this. I can not heal her. Failing them. Failing myself. Just failing. What my daughter is going through is horrid. It is a monster that is taking over our lives and I hate it. i have to figure something out. figure out how to keep myself whole and keep my children whole. i have to do better. tomorrow i have to do better.
strength love hope
I don't have much to report. We are still struggling. It is not the worst flare because at least she is...wait, never mind. I've learned not to jinx myself so I don't dare say it. But it is not the worst.
The mornings are just awful and as bad as I remember they were in those early months of crisis when she was five years old. I am trying so hard but I can't help her. I've grown more stressed and reactive. I keep picking myself up and creating all this optimism - I can't help myself - it's what I do. I think, "This afternoon will be different. We will just relax and hang out, have pizza and watch a movie", and before I know it all hell has broken loose. I pick myself up and then come crashing down. Hard. My daughter is screaming because I've asked her to take a break from something, and after 20 minutes of being really calm and patient I am suddenly not. I seem to have a lower level of tolerance and I am crying more.
I am so tired. I am so sad. I feel like this is defining our life and our family and their childhood. Her younger sister just watches all of this go on day after day. After a fun morning of playing outside before school it is time to go and my kindergartner is all buckled in when it starts. "MY PART DOESN'T FEEL RIGHT!" and we're off but standing still. She's been fixating on the part in her hair lately. An OCD fit begins and I feel helpless and hopeless. I sit, emotionless, knowing nothing I do or say will do anything but make it worse. "YOU HAVE TO FIX IT! FIX MY HAIR...NOW!!!" If I try to fix it, the rage will go on, get louder, and it may never ever end and we will be stuck in this car with the screaming for the REST OF OUR LIVES. That's how it feels in that very moment. So I either drive to school with her screaming and risk that she won't get out of the car when we get there, or I bring them inside and hope the change of scenery helps me to snap her out of it. We have only 10 minutes wiggle room to get to school on time. We unbuckle, she screams at me, we head inside, I close the door to the outside world again. What is my little kindergartner feeling at that moment; all ready to go to school and out of the blue we are in the midst of chaos, again. It breaks my heart in to a million pieces.
Very quickly I realize this isn't going to be over in 10 minutes, I can't get them to school on time, by little one starts crying because she just wanted to go to school, and I can not seem to hold myself together. I begin to unravel. I go to my room to focus and get myself pulled together. Pulled together for my kindergartner, pulled together enough to walk in to that school, and pulled together enough to try again and calm her down.
What is going through my little ones head now? Minutes ago, sitting in her car seat, happy; her shining eyes and that smile are etched in to my memory by the familiar look of fear that replaced it in an unforeseeable instant. To be driven because it is a fun change from taking the bus. This happy morning has turned in to a disaster and now instead of being at school before the buses arrive, she'll be 30 minutes late. Instead of chatting on our way to school she has to listen to her sister screaming and crying and carrying on. I can not seem to hold myself together for the pain and fury of it all. I quiet my voice and tell her it will be okay; that her sister will feel better soon, and that I will not yell. I'm sorry she has to experience this every day.
When they play they yell at each other now. Little arguments become screams - echoing the words shouted during meltdowns and ripping my heart to pieces. They are replaying it all, probably in an effort to work it all out. I want to do so so so much better for them. I want to help them cope and manage all these emotions. I want it so bad I can taste it and feel it but there are days I just don't have anything left to give. I sit and listen to their play and I can not go to them. Every failure on my part depletes my resolve and strips away just a little bit of my optimism. I hope this flare passes and gives us all some relief in time for me to regroup. I want to set a good example for how to handle big emotions and frustrations. I try so hard. Every single day I wake up and go through my plan in my head. Every night I vow to do better the next day. And in between I have wonderful moments and horrible moments and the beat goes on.
This is harder than anything I have ever endured in my life. This feeling that I am absolutely letting my children down. I can not make her better. I can not fix this. I can not heal her. Failing them. Failing myself. Just failing. What my daughter is going through is horrid. It is a monster that is taking over our lives and I hate it. i have to figure something out. figure out how to keep myself whole and keep my children whole. i have to do better. tomorrow i have to do better.
strength love hope
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