Meds
Ewen: before bed: 4.2 ml Prozac, 500mg Zithromax 3x a week, less than 1/4 Clonidine, 1.5mg melatonin, 3 drops of D3
morning: probiotics
8-year-old sister: 3ml Zithromax, 1mg probiotics, magnesium, 1/2 pill of Oncoplex opened and the powder put in a drink, 1mg melatonin, 3 drops of D3, iron
morning: probiotics
14-year-old sister: (As of today) before bed: 500 mg Zithromax, Prozac 20 mg, Oncoplex (broccoli sprout extract), 5mg Buspar, magnesium, 3 drops of D3, iron
morning: probiotics
Story
Ewen:
He's doing OK. He is a bit down right now and "going through the motions". School is almost over and he is feeling the stress of needing to buckle down and get all A's. But he says he likes school. He does best when he takes 500 mg of Zithromax a day, but we only do that when he is having a regression, otherwise it is too much. But I do wonder if it is hurting him to not take the "right" amount of Zithromax to cut out his PANS symptoms of mild depression (since that is not his normal personality). But I am more worried to give him massive doses of antibiotics on a daily basis. 3x a week feels more than enough.
8-year-old sister:
She had her annual appt a couple of months ago where I once again told our pediatrician that she would call out, "I feel bad!" all though the day. I once again told the pediatrician that my little one complained of leg pain and all over body pain. She didn't want to go to school and quit gymnastics because of fatigue. I have been worried about the leg pain for years. So our pediatrician did blood tests and threw in the test for mycoplasma levels since it is "in the family". All the tests came back OK except for, like Ewen, her mycoplasma past titers were very high. So she has been on the Zithromax for about 5 weeks now and she no longer calls out "I feel bad!" She sleeps through the night for the first time in her life and she no longer complains of all over body pain or leg pain.
14-year-old sister:
She has high to medium functioning autism and is in major teenager mode. She has been on Prozac for a couple of months now and it seems to have stopped the daily sobbing. But she still has been refusing to go to school due to anxiety and depression and "just not feeling well." I know to trust her words because when she is feeling well she is quite happy to go to school. She attends a small private school with awesome teachers and small class sizes. The kids in her class are very kind to her and a couple of them are her friends. She knows how fortunate she is to have an amazing place as her school. But she still can't bring herself to go when she is sick...mentally and/or physically.
I noticed recently that she has been ticking a lot. She has had vocal tics during the day and involuntary movements when she is asleep and during the night too. They often wake her up then she is exhausted during the day. I don't know if the ticking increase is because of the Prozac or if she is crashing from PANS. Ewen's tics got way worse when he started the Prozac but stopped after day 3 of the Zithromax.
Anyway, I took her to our Pediatrician today and we started her on Zithromax too, because of her tics and because it is helping Ewen and our youngest so much. I have so much hope for her.
It is weird to have all 3 of them on daily antibiotics. For my 14-year-old, I am so hopeful that this will help her. Before her appointment she asked me if I had ever wanted to kill myself. I talked to her about how suicide is a permanent solution for a temporary problem. I told her that if she killed herself that she basically would be killing me too (not sure if you are supposed to say that). I told her that we are working diligently on getting her more comfortable and we have options to try and that I will stay with her through all of this. We are on the wait list for her to see a therapist and I will get a call for an appt in 4 weeks. It seems far away.
The thing is that I don't think that she really wants to kill herself. She is not crying every day anymore like she was before the Prozac and it seems to have cleared her head from the fog of Autism in a way that is new. Maybe that is why the stress of being a teenager with social skill issues is suddenly even harder to bare, even though she isn't lost in crying fits and "videos" that play in her head. She wouldn't know how to do it for one. But I think that it is just a reaction to what she is looking at on the internet, talking about this new 13-Things Show (I won't let her watch it) and she is exploring thinking about it. I know she doesn't want to do it but even having that conversation yesterday was hard as fuck.
Finally....I had my Dr check my mycoplasma levels and also check to see if I had Mono a while ago. My past titers for both were very high. She said that past titers don't matter and she had never heard of PANS or PANDAS. I guess it is a pediatric disorder so I don't need to be treated for it. But I worry about the Alzheimers in my family and just now I looked up, "Antibiotics help Alzheimers " This is what I found: https://www.sciencedaily.com/releases/2016/07/160721072559.htm
It does. And the breaking down of brain crap starts 20 years before the Alzheimers is obvious. So I thought, maybe I should get this genetic mycoplasma thing taken care of for myself too so that I don't regret ignoring it for myself 20 years down the road. Our pediatrician gave me the name of a doctor who she said would listen to me and might have an open mind about it.
I, like the kids, suffer from severe anxiety and mild depression. Prozac helps me immensely, and I also take Ritalin and that helps me stay focussed and clear and calm. So I don't just feel fine these days, I feel better than I have in a long time so it would be weird to suddenly start taking daily doses of Zithromax when I'm not sick or even sad or anxious. But I also know that my Prozac and Ritalin could be covering up and masking the symptoms. Also, my symptoms of sudden constant panic attacks came as a very sudden onset at age 27. It was so sudden that I was diagnosed with PTSD. So maybe I need to get this looked at for myself too.
This is such new medical exploration and I feel like we are blindly feeling our way through it, but very carefully and with the guidance of experts. There is so much intuition and observation that goes along with being on the cusp of medical break-throughs and science that has studies that...though compelling, you have to dig to find them. It is a lonely place to be but also interesting. I am so thankful for our pediatrician. I just want my kids to lead relatively-happy (they don't have to be happy all the time, just not clinically depressed and anxious) and healthy lives, and I feel like I have been able to help, which is what keeps me strong and optimistic.
Ewen: before bed: 4.2 ml Prozac, 500mg Zithromax 3x a week, less than 1/4 Clonidine, 1.5mg melatonin, 3 drops of D3
morning: probiotics
8-year-old sister: 3ml Zithromax, 1mg probiotics, magnesium, 1/2 pill of Oncoplex opened and the powder put in a drink, 1mg melatonin, 3 drops of D3, iron
morning: probiotics
14-year-old sister: (As of today) before bed: 500 mg Zithromax, Prozac 20 mg, Oncoplex (broccoli sprout extract), 5mg Buspar, magnesium, 3 drops of D3, iron
morning: probiotics
Story
Ewen:
He's doing OK. He is a bit down right now and "going through the motions". School is almost over and he is feeling the stress of needing to buckle down and get all A's. But he says he likes school. He does best when he takes 500 mg of Zithromax a day, but we only do that when he is having a regression, otherwise it is too much. But I do wonder if it is hurting him to not take the "right" amount of Zithromax to cut out his PANS symptoms of mild depression (since that is not his normal personality). But I am more worried to give him massive doses of antibiotics on a daily basis. 3x a week feels more than enough.
8-year-old sister:
She had her annual appt a couple of months ago where I once again told our pediatrician that she would call out, "I feel bad!" all though the day. I once again told the pediatrician that my little one complained of leg pain and all over body pain. She didn't want to go to school and quit gymnastics because of fatigue. I have been worried about the leg pain for years. So our pediatrician did blood tests and threw in the test for mycoplasma levels since it is "in the family". All the tests came back OK except for, like Ewen, her mycoplasma past titers were very high. So she has been on the Zithromax for about 5 weeks now and she no longer calls out "I feel bad!" She sleeps through the night for the first time in her life and she no longer complains of all over body pain or leg pain.
14-year-old sister:
She has high to medium functioning autism and is in major teenager mode. She has been on Prozac for a couple of months now and it seems to have stopped the daily sobbing. But she still has been refusing to go to school due to anxiety and depression and "just not feeling well." I know to trust her words because when she is feeling well she is quite happy to go to school. She attends a small private school with awesome teachers and small class sizes. The kids in her class are very kind to her and a couple of them are her friends. She knows how fortunate she is to have an amazing place as her school. But she still can't bring herself to go when she is sick...mentally and/or physically.
I noticed recently that she has been ticking a lot. She has had vocal tics during the day and involuntary movements when she is asleep and during the night too. They often wake her up then she is exhausted during the day. I don't know if the ticking increase is because of the Prozac or if she is crashing from PANS. Ewen's tics got way worse when he started the Prozac but stopped after day 3 of the Zithromax.
Anyway, I took her to our Pediatrician today and we started her on Zithromax too, because of her tics and because it is helping Ewen and our youngest so much. I have so much hope for her.
It is weird to have all 3 of them on daily antibiotics. For my 14-year-old, I am so hopeful that this will help her. Before her appointment she asked me if I had ever wanted to kill myself. I talked to her about how suicide is a permanent solution for a temporary problem. I told her that if she killed herself that she basically would be killing me too (not sure if you are supposed to say that). I told her that we are working diligently on getting her more comfortable and we have options to try and that I will stay with her through all of this. We are on the wait list for her to see a therapist and I will get a call for an appt in 4 weeks. It seems far away.
The thing is that I don't think that she really wants to kill herself. She is not crying every day anymore like she was before the Prozac and it seems to have cleared her head from the fog of Autism in a way that is new. Maybe that is why the stress of being a teenager with social skill issues is suddenly even harder to bare, even though she isn't lost in crying fits and "videos" that play in her head. She wouldn't know how to do it for one. But I think that it is just a reaction to what she is looking at on the internet, talking about this new 13-Things Show (I won't let her watch it) and she is exploring thinking about it. I know she doesn't want to do it but even having that conversation yesterday was hard as fuck.
Finally....I had my Dr check my mycoplasma levels and also check to see if I had Mono a while ago. My past titers for both were very high. She said that past titers don't matter and she had never heard of PANS or PANDAS. I guess it is a pediatric disorder so I don't need to be treated for it. But I worry about the Alzheimers in my family and just now I looked up, "Antibiotics help Alzheimers " This is what I found: https://www.sciencedaily.com/releases/2016/07/160721072559.htm
It does. And the breaking down of brain crap starts 20 years before the Alzheimers is obvious. So I thought, maybe I should get this genetic mycoplasma thing taken care of for myself too so that I don't regret ignoring it for myself 20 years down the road. Our pediatrician gave me the name of a doctor who she said would listen to me and might have an open mind about it.
I, like the kids, suffer from severe anxiety and mild depression. Prozac helps me immensely, and I also take Ritalin and that helps me stay focussed and clear and calm. So I don't just feel fine these days, I feel better than I have in a long time so it would be weird to suddenly start taking daily doses of Zithromax when I'm not sick or even sad or anxious. But I also know that my Prozac and Ritalin could be covering up and masking the symptoms. Also, my symptoms of sudden constant panic attacks came as a very sudden onset at age 27. It was so sudden that I was diagnosed with PTSD. So maybe I need to get this looked at for myself too.
This is such new medical exploration and I feel like we are blindly feeling our way through it, but very carefully and with the guidance of experts. There is so much intuition and observation that goes along with being on the cusp of medical break-throughs and science that has studies that...though compelling, you have to dig to find them. It is a lonely place to be but also interesting. I am so thankful for our pediatrician. I just want my kids to lead relatively-happy (they don't have to be happy all the time, just not clinically depressed and anxious) and healthy lives, and I feel like I have been able to help, which is what keeps me strong and optimistic.
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