4.1 ML Prozac, small quarter of Clonidine (very small) 1st day of Zithromax (antibiotics)
To catch you up, we got the blood work results back on Friday (4 days ago) and the strep titers were fine but it DID show that he was fighting something off hard core because his mycoplasma pneumoniae were supposed to be .9 but are 3.09, which I'm told is very, very high. So we have an answer and the answer is yes, he has PANS. We talked about that in the beginning with his pediatrician since the symptoms fit the diagnosis, but I didn't realize that the flu and pneumonia he had in May could affect him in December. But if I would have thought about it more I would have remembered how I was concerned about him all summer long with his "abnormal behavior". So I think he has been dealing with the PANS for moths, then he had a flair up on December 15th.
Today we started Zithromax for 3 week trail to see if that helps. He was very nauseous after the first dose since you give 2 pills on the first day. We gave it with food also. I gave him some probiotics 2 hours afterwards and then he was alright for dinner.
I gave him a very small amount of Clonidine because he has been so depressed lately. He played a soccer tournament this past weekend and his team won and he still wasn't genuinely happy. It sucks that he is depressed. We are giving him Prozac for the anxiety and depression, but the Prozac gives him awful tics so we give him Clonodine for the tics which makes him depressed.
So I'm phasing out the Clonodine and we are going to bring down the Prozac more. I'm hoping the Zithromax will start working soon. I keep having these visions of my old Ewen, the one who is motivated and happy and up for anything. I miss that Ewen with all my heart. I warn myself not to let myself think too much about getting that Ewen back. But the nurse said that some kids with levels as high as Ewen's do amazing with treatment for PANS. Please let him be one of those children.
He went to bed at 9pm tonight since he has been so tired in the morning and I had to rub his feet and back and head for half an hour until he fell asleep. He has been so depressed and negative that it breaks my heart and I hate sending him to school like this. I want to keep him home and make sure he is OK, but then I would also never get any work done. His teacher texted me today that Ewen was feeling down today and didn't play at recess.
To catch you up, we got the blood work results back on Friday (4 days ago) and the strep titers were fine but it DID show that he was fighting something off hard core because his mycoplasma pneumoniae were supposed to be .9 but are 3.09, which I'm told is very, very high. So we have an answer and the answer is yes, he has PANS. We talked about that in the beginning with his pediatrician since the symptoms fit the diagnosis, but I didn't realize that the flu and pneumonia he had in May could affect him in December. But if I would have thought about it more I would have remembered how I was concerned about him all summer long with his "abnormal behavior". So I think he has been dealing with the PANS for moths, then he had a flair up on December 15th.
Today we started Zithromax for 3 week trail to see if that helps. He was very nauseous after the first dose since you give 2 pills on the first day. We gave it with food also. I gave him some probiotics 2 hours afterwards and then he was alright for dinner.
I gave him a very small amount of Clonidine because he has been so depressed lately. He played a soccer tournament this past weekend and his team won and he still wasn't genuinely happy. It sucks that he is depressed. We are giving him Prozac for the anxiety and depression, but the Prozac gives him awful tics so we give him Clonodine for the tics which makes him depressed.
So I'm phasing out the Clonodine and we are going to bring down the Prozac more. I'm hoping the Zithromax will start working soon. I keep having these visions of my old Ewen, the one who is motivated and happy and up for anything. I miss that Ewen with all my heart. I warn myself not to let myself think too much about getting that Ewen back. But the nurse said that some kids with levels as high as Ewen's do amazing with treatment for PANS. Please let him be one of those children.
He went to bed at 9pm tonight since he has been so tired in the morning and I had to rub his feet and back and head for half an hour until he fell asleep. He has been so depressed and negative that it breaks my heart and I hate sending him to school like this. I want to keep him home and make sure he is OK, but then I would also never get any work done. His teacher texted me today that Ewen was feeling down today and didn't play at recess.
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