4pm -4ml prozac and 1 Zithromax, 8:30pm-1/8 Clonidine & probiotics
Today Ewen told me he had a "legit" good day at school. He barely huffed all day and he went to sleep by himself tonight. I didn't even go in his room to sit with him, and I didn't hear any huffing coming from in there. When I peaked in I saw him kind of banging his leg against the bed so I don't think he is completely tic free. But it is so nice for things to not be in emergency mode for the first time in ages.
I have been sleeping a lot. I feel like I must have months of sleep to catch up on and I keep taking mid morning naps when I am supposed to be editing. But they are the most glorious naps...heavy, relaxed sleep with no dreams and no worries and I wake up rested and happy. Then I go to bed at normal time and sleep a good 8 hours. So I am getting about 10 hours a sleep a day now instead of 6 fitful hours. I'm just going to just go with it and recover along with Ewen. It feels like we are ET and Elliot sometimes with how connected I am emotionally with my kids...so close that it affects my health. I suppose that is normal though really. We are all sick with worry when our kids are terribly sick and happy when everyone is healthy.
I wonder who is reading this blog? Is anyone else going through this? Has anyone else had a child who suddenly started having panic attacks and tourrets and think it may be PANS or PANDAS? I very much hope that doctors and health professionals are reading this too.
Speaking of doctors, my 7-year-old daughter is not on the spectrum. She is a smart cookie too but she doesn't have a brain like her older brother and sister...full of brilliance and weirdness. She is loving and intelligent and witty. But she has been sick recently too and put on the back burner because of all of this with Ewen. She has chronic constipation and recently she even vomited she was so constipated. I went to go and buy her some Mirilax because that is what Ewen took when he was a baby...age 1-2 and he had terrible constipation. Back in 2006 the specialist told me to give Mirilax to Ewen and it really helped to get him back on track and keep him comfortable when it seemed that nothing else could. I gave it to him for a year.
But when I bought the Mirilax a few days ago I came home and read that it was for people age 17 and up. I thought that was very strange that it didn't say it was for kids when I had given it to my baby boy all those years ago. So I googled the Mirilax side effects and to my dismay I found that the FDA is conducting a study looking into Mirilax causing psychiatric abnormalities and tourrets syndrome. I looked at that with horror and remembered Ewen's headaches and night terrors when he was just a little guy. We even got him an MRI to make sure he didn't have a brain tumor. He was fine by the way but they didn't use die. Anyway, I wonder if the Mirilax did that to him as a baby and nudged him in the direction of PANS as an adolescent. Who knows. But I was sure now that my youngest was not going to follow in Ewen's footsteps and take Mirilax too.
We went to see the gastroenterologist 2 days ago and she of course told us to use Mirilax. I told her about the FDA study and she had no idea. She said she prescribed Mirilax every day and had never heard about this. I told her that there are Yahoo and Facebook groups out there of parents talking about it. She said that she didn't take much stock in those parent groups so I told her that 10 years ago it was the parents suggesting gut issues and GF diets for kids on autism while it was the University Psychiatrists at this very establishment telling me that was BS and misinformed ignorant parents grasping for cures. And now most pediatricians, when they learn that a child is on the spectrum they will suggest gut issues, probiotics and the GFCF diet to the parents as a routine treatment option.
It is the parents who lead the way with noticing what is going on with their children and demanding the studies and the science to be put into action so that we can all understand what the heck is going on.
Anyway, I thought that was unsettling to say the least that the specialist didn't know about the FDA study. And I find it unsettling that Ewen's CBT therapist didn't know what PANS was, when I bet that quite a few of her patients probably unknowingly have it. The top child psychiatrist at the University didn't notice that all of Ewen's symptoms checked off every box on the PANS check list and he didn't ask for blood work to check for it. It was our pediatrician who works mostly with children who have auto-immune issues...lots of spectrum kids...who knew what the heck was going on. She was the only one and she was the one who prescribed the Zithromax that is actually helping with all these tics and helping to bring back his enthusiasm and his old self. These damn specialists need to google their own profession and learn what is new and cutting edge and controversial and have up-to-date knowledge and a conscience about what they are prescribing to small children.
My youngest is now taking pedia-lax chewables and they are helping her constipation a lot. The warning on the bottle is for age 2 and up. I can live with that age group warning. Also there is nothing on there that warns you to stop taking them after a couple of days...which is good since she is supposed to take them for 6 weeks to shrink her colon back to normal size again. Perhaps we will find out in a few years that pedia-lax does something awful. But for now it seems like the right option, the best and the least scary option.
What a crazy few months these have been. I feel like things are at resting point now...no more emergency mode. I can sleep now, for a little while.
Today Ewen told me he had a "legit" good day at school. He barely huffed all day and he went to sleep by himself tonight. I didn't even go in his room to sit with him, and I didn't hear any huffing coming from in there. When I peaked in I saw him kind of banging his leg against the bed so I don't think he is completely tic free. But it is so nice for things to not be in emergency mode for the first time in ages.
I have been sleeping a lot. I feel like I must have months of sleep to catch up on and I keep taking mid morning naps when I am supposed to be editing. But they are the most glorious naps...heavy, relaxed sleep with no dreams and no worries and I wake up rested and happy. Then I go to bed at normal time and sleep a good 8 hours. So I am getting about 10 hours a sleep a day now instead of 6 fitful hours. I'm just going to just go with it and recover along with Ewen. It feels like we are ET and Elliot sometimes with how connected I am emotionally with my kids...so close that it affects my health. I suppose that is normal though really. We are all sick with worry when our kids are terribly sick and happy when everyone is healthy.
I wonder who is reading this blog? Is anyone else going through this? Has anyone else had a child who suddenly started having panic attacks and tourrets and think it may be PANS or PANDAS? I very much hope that doctors and health professionals are reading this too.
Speaking of doctors, my 7-year-old daughter is not on the spectrum. She is a smart cookie too but she doesn't have a brain like her older brother and sister...full of brilliance and weirdness. She is loving and intelligent and witty. But she has been sick recently too and put on the back burner because of all of this with Ewen. She has chronic constipation and recently she even vomited she was so constipated. I went to go and buy her some Mirilax because that is what Ewen took when he was a baby...age 1-2 and he had terrible constipation. Back in 2006 the specialist told me to give Mirilax to Ewen and it really helped to get him back on track and keep him comfortable when it seemed that nothing else could. I gave it to him for a year.
But when I bought the Mirilax a few days ago I came home and read that it was for people age 17 and up. I thought that was very strange that it didn't say it was for kids when I had given it to my baby boy all those years ago. So I googled the Mirilax side effects and to my dismay I found that the FDA is conducting a study looking into Mirilax causing psychiatric abnormalities and tourrets syndrome. I looked at that with horror and remembered Ewen's headaches and night terrors when he was just a little guy. We even got him an MRI to make sure he didn't have a brain tumor. He was fine by the way but they didn't use die. Anyway, I wonder if the Mirilax did that to him as a baby and nudged him in the direction of PANS as an adolescent. Who knows. But I was sure now that my youngest was not going to follow in Ewen's footsteps and take Mirilax too.
We went to see the gastroenterologist 2 days ago and she of course told us to use Mirilax. I told her about the FDA study and she had no idea. She said she prescribed Mirilax every day and had never heard about this. I told her that there are Yahoo and Facebook groups out there of parents talking about it. She said that she didn't take much stock in those parent groups so I told her that 10 years ago it was the parents suggesting gut issues and GF diets for kids on autism while it was the University Psychiatrists at this very establishment telling me that was BS and misinformed ignorant parents grasping for cures. And now most pediatricians, when they learn that a child is on the spectrum they will suggest gut issues, probiotics and the GFCF diet to the parents as a routine treatment option.
It is the parents who lead the way with noticing what is going on with their children and demanding the studies and the science to be put into action so that we can all understand what the heck is going on.
Anyway, I thought that was unsettling to say the least that the specialist didn't know about the FDA study. And I find it unsettling that Ewen's CBT therapist didn't know what PANS was, when I bet that quite a few of her patients probably unknowingly have it. The top child psychiatrist at the University didn't notice that all of Ewen's symptoms checked off every box on the PANS check list and he didn't ask for blood work to check for it. It was our pediatrician who works mostly with children who have auto-immune issues...lots of spectrum kids...who knew what the heck was going on. She was the only one and she was the one who prescribed the Zithromax that is actually helping with all these tics and helping to bring back his enthusiasm and his old self. These damn specialists need to google their own profession and learn what is new and cutting edge and controversial and have up-to-date knowledge and a conscience about what they are prescribing to small children.
My youngest is now taking pedia-lax chewables and they are helping her constipation a lot. The warning on the bottle is for age 2 and up. I can live with that age group warning. Also there is nothing on there that warns you to stop taking them after a couple of days...which is good since she is supposed to take them for 6 weeks to shrink her colon back to normal size again. Perhaps we will find out in a few years that pedia-lax does something awful. But for now it seems like the right option, the best and the least scary option.
What a crazy few months these have been. I feel like things are at resting point now...no more emergency mode. I can sleep now, for a little while.
Comments
Post a Comment