My 10-year-old with panic is now my 12-year-old with no panic. He still has PANS and still needs Zithromax. But he sometimes tells me how happy and comfortable he is when he falls asleep.
My 14-year-old daughter with autism is also doing well since the Zithromax. She no longer says things that scare me about how she doesn't want to live. She is able to keep her strong emotions better managed and she too has found happiness this summer. In fact, she is currently at a sleepover at her friends house! Her friend is also an Aspie which is good, because it means that there is no judgement or offense taken if my my girl wants to go off on her own to regroup.
And my 8-year-old daughter is also doing much better on Zithromax. I haven't heard one complaint of pain or fatigue this summer (after 5 years of these constant complaints). She has a new tic where she blinks her eyes repeatedly. But she isn't bothered by it and she is loud and silly and runs around like a maniac. I am giving her a supplement recommended to me by her pediatrician to address the tic so we will see if that helps.
I love that they are all doing well but worried about the effects of long term antibiotics as they are children, not even adults. It really scares me. But it scares me less than them being plagued by autoimmune-induced pain, anxiety, depression and OCD.
Something that I have been thinking about has to do with me.
In 2000, when I was 28 years old and Mike and I were living in California, I suddenly woke up in the middle of the night with a panic attack. I didn't know it was a panic attack. I though I was having a stroke or dying or something. So Mike took me to the ER. They knew right away it was a panic attack and gave me an Ativan. It helped quite quickly and I was relieved I was better.
The main problem was that when I woke up the next morning, the panic came back and it didn't go away. So I went for a run to try and turn the fast heart beat into a reason...and then hoped that as I relaxed from my run that my heartbeat would slow. But it didn't. I went to see a doctor in desperation and she prescribed me Paxil. I went home and took one right away, hoping to feel better immediately. Mike was out when I started to feel the effects of it. I thought I was loosing my mind. I thought about calling 911 I was in so much agony. I thought I would be treated badly though and taken to some horrible mental hospital by people who didn't understand. I thought to myself that if I killed myself that this pain would stop. But I knew that wasn't what I really wanted to do. I don't remember how long it took to feel better but the effects wore off. And when I got in touch with a psychiatrist that my doctor recommended, I told her over the phone what was going on...that I had constant panic, not just a panic attack that went away. She said that I was very sick and to take one of the Ativan they gave me at the hospital right now, and she would see me on Monday.
This psychiatrist got me through that horrible month. I took Ativan 2 times a day and large doses of Zoloft that gave me horrible side effects. But after about 4 weeks I finally could go a day without taking the Ativan and my heartbeat would be at a normal rate.
Now fast forward to 2016. After we saw the high levels of mycoplasma in Ewen's blood test, I asked my doctor if she would test my levels. She did, even though she had never heard of PANS or PANDAS. I also have high (past) levels of mycoplasma. Not as crazy-high as Ewen's but way, way above normal. She told me that all the test revealed was that I had developed titers to fight a mycoplasma infection that happens in the past...and that it had no relevance now. I didn't argue with her because she is a nice person and a good doctor but no where near ready to learn from the beginning about PANS and treat it accordingly. She is going to retire very soon too. Anyway, I figured at the time of our conversation about the results, that PANS is a pediatric thing anyway, and so I must not have it.
And fast forward to today...I looked up "adults with PANS" and guess what I found? Adults do get it, except it is called autoimmune encephalitis. So I realize now that I most likely suffer from it too. I take Prozac to calm my anxiety too but maybe I should be taking Zithromax to stop inflammation causing the symptoms? I don't know. I'm going to see a new doctor on Friday who maybe will be willing to learn and to listen. But there you go. I guess my poor kiddos got it from me. But my first hand knowledge how serious panic and mental pain truly is, has helped me in my quest to find them treatment and get them well.
I'd like to finish this post by acknowledging that I know that people don't have to be happy all the time. A complete person has a range of emotions that include anxiety, extreme sadness and despair at times. What needs to be treated is when these things don't go away and rip a person apart for a long time. We have such short lives that they must be lived with a little meaning, and the most accessible way to live and feel that, is to be able to come up from under the water and breathe the air.
I told Ewen last night that there are so many treatments out there for anxiety and depression. I told him that researchers are discovering new ones all the time. Then I said, "if you are ever struggling with depression when you are older, come to me. Know that there is always a way to feel better and I will help you."
He smiled and said with complete trust, "ok mom."
My 14-year-old daughter with autism is also doing well since the Zithromax. She no longer says things that scare me about how she doesn't want to live. She is able to keep her strong emotions better managed and she too has found happiness this summer. In fact, she is currently at a sleepover at her friends house! Her friend is also an Aspie which is good, because it means that there is no judgement or offense taken if my my girl wants to go off on her own to regroup.
And my 8-year-old daughter is also doing much better on Zithromax. I haven't heard one complaint of pain or fatigue this summer (after 5 years of these constant complaints). She has a new tic where she blinks her eyes repeatedly. But she isn't bothered by it and she is loud and silly and runs around like a maniac. I am giving her a supplement recommended to me by her pediatrician to address the tic so we will see if that helps.
I love that they are all doing well but worried about the effects of long term antibiotics as they are children, not even adults. It really scares me. But it scares me less than them being plagued by autoimmune-induced pain, anxiety, depression and OCD.
Something that I have been thinking about has to do with me.
In 2000, when I was 28 years old and Mike and I were living in California, I suddenly woke up in the middle of the night with a panic attack. I didn't know it was a panic attack. I though I was having a stroke or dying or something. So Mike took me to the ER. They knew right away it was a panic attack and gave me an Ativan. It helped quite quickly and I was relieved I was better.
The main problem was that when I woke up the next morning, the panic came back and it didn't go away. So I went for a run to try and turn the fast heart beat into a reason...and then hoped that as I relaxed from my run that my heartbeat would slow. But it didn't. I went to see a doctor in desperation and she prescribed me Paxil. I went home and took one right away, hoping to feel better immediately. Mike was out when I started to feel the effects of it. I thought I was loosing my mind. I thought about calling 911 I was in so much agony. I thought I would be treated badly though and taken to some horrible mental hospital by people who didn't understand. I thought to myself that if I killed myself that this pain would stop. But I knew that wasn't what I really wanted to do. I don't remember how long it took to feel better but the effects wore off. And when I got in touch with a psychiatrist that my doctor recommended, I told her over the phone what was going on...that I had constant panic, not just a panic attack that went away. She said that I was very sick and to take one of the Ativan they gave me at the hospital right now, and she would see me on Monday.
This psychiatrist got me through that horrible month. I took Ativan 2 times a day and large doses of Zoloft that gave me horrible side effects. But after about 4 weeks I finally could go a day without taking the Ativan and my heartbeat would be at a normal rate.
Now fast forward to 2016. After we saw the high levels of mycoplasma in Ewen's blood test, I asked my doctor if she would test my levels. She did, even though she had never heard of PANS or PANDAS. I also have high (past) levels of mycoplasma. Not as crazy-high as Ewen's but way, way above normal. She told me that all the test revealed was that I had developed titers to fight a mycoplasma infection that happens in the past...and that it had no relevance now. I didn't argue with her because she is a nice person and a good doctor but no where near ready to learn from the beginning about PANS and treat it accordingly. She is going to retire very soon too. Anyway, I figured at the time of our conversation about the results, that PANS is a pediatric thing anyway, and so I must not have it.
And fast forward to today...I looked up "adults with PANS" and guess what I found? Adults do get it, except it is called autoimmune encephalitis. So I realize now that I most likely suffer from it too. I take Prozac to calm my anxiety too but maybe I should be taking Zithromax to stop inflammation causing the symptoms? I don't know. I'm going to see a new doctor on Friday who maybe will be willing to learn and to listen. But there you go. I guess my poor kiddos got it from me. But my first hand knowledge how serious panic and mental pain truly is, has helped me in my quest to find them treatment and get them well.
I'd like to finish this post by acknowledging that I know that people don't have to be happy all the time. A complete person has a range of emotions that include anxiety, extreme sadness and despair at times. What needs to be treated is when these things don't go away and rip a person apart for a long time. We have such short lives that they must be lived with a little meaning, and the most accessible way to live and feel that, is to be able to come up from under the water and breathe the air.
I told Ewen last night that there are so many treatments out there for anxiety and depression. I told him that researchers are discovering new ones all the time. Then I said, "if you are ever struggling with depression when you are older, come to me. Know that there is always a way to feel better and I will help you."
He smiled and said with complete trust, "ok mom."
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