Skip to main content

Up and Down

4ml prozac at 4pm, 1 zithromax, 9pm 1/6 clonodine

Well it has been up and down. We met with Ewen's pediatrician yesterday and told her about how he was joyful now and up for anything. But he also said a couple of nights ago that he felt a bit anxious and had an OCD thought that the itchy part on his leg might be poison. That made me a bit dismayed because the Zithromax is supposed to be curing this stuff.  Today he has been complaining about a twitchiness in his leg. I would start coming down on the Prozac to try and help the weird leg twitchy feelings if he hadn't complained of anxiety 2 nights ago.

But overall since he has been taking the Zithromax, he has been happy and healthy and having fun. He has been more social and when he went swimming 2 days ago he talked to his sister the whole time and was very sociable and happy.  It's just these past couple of days he has been more dissatisfied and needing to be entertained every second and craving sugar like a mad man... like before. I thought we were on the road to steady recovery but I suppose it is typical of recovery from neurological issues to take two steps forward and one step back.

His huffing is much much better but I'm concerned about this leg discomfort. He said he feels like it needs to be massaged 24/7
I just gave him his Clonodine and we will see if that helps his leg.

I was shocked at his doctor appointment when she said that he may have to take antibiotics until he has an adult immune system and the newest literature was until he was 22. That is 11 more years, double his age now. I don't like to think of him as having a long term illness. But at least it isn't a degenerative one if it is treated.

So today was a bit sad. I am taking Prozac too and I was glad of it today. I didn't sink into a funk like I have previously when he has had set backs.


Comments

Post a Comment

Popular posts from this blog

Spring Break 2017 Update

4ml Prozac, 500mg Zithromax 3x a week, 1.5 mg melatonin, less than a quarter of Clonidine Ewen is doing well. Right now he is vacuuming and mopping the whole house (all 850 square fee lol) To earn an hour of screen time playing Overwatch. We have had a few hiccups. He got in major trouble in school for hacking into the computer and writing silly things on a class web page. He said he didn't realize he would get a referral and get in so much trouble since he wasn't hurting anyone and would never bully. He also dropped his grades because he was too busy having fun with his friends. So Mike and I had a meeting with his teachers. He now has a 504 plan since he has had lots of absences.  We are paying close attention so that we can make sure he completes his assignments. Last month he was having trouble with tics (mostly huffing) and anxiety and so his pediatrician put his Zithromax up to 500 mg every day for a full week. That completely helped and was amazing to get him back
4 comments
Read more

The Chair of the Pediatric ER Wrote Back!!!!!

Ms. ....... Thank you very much for bringing your son’s case and experience to our attention. First of all, I hope that Owen is still doing much better. I absolutely understand how devastating this could be in terms of a missed opportunity to appropriately diagnose. I have to say that in reading your email and updating my knowledge about the condition, I could see how it may be quite difficult to make a diagnosis accurately in an Emergency Department setting and I could see why things occurred in the manner in which they did. That said, I am very sorry that we let you and your family and your son down in this way. Our Pediatric Emergency Department are staffed by a group of very expert pediatric emergency medicine specialists trained in some of our nation’s leading teaching institutions who I was able to recruit here to ...........  to take care of our community. I know that the fact that we were not able to expeditiously diagnose your son’s condition caused a great deal of an
2 comments
Read more

Thursday, May 5th, We Have Our Ewen Back

4ml Prozac (16 weeks today), 1/8 Clonidine, probiotics, antibiotics (Zithromax) day 10. Today I saw our old Ewen again. He was happy and silly and energetic. He barely huffed  all day and he fell asleep calmly with no huffing. When the cat was making dough on his bed he said, is that her tic? I laughed and said, yes. I can't even describe properly how amazing this recovery is. He wasn't trying to constantly distract himself with video games today. He could hang out and talk and laugh and relax. It was amazing. I am so scared to write this incase it all changes back again tomorrow. But today, at least, he was like the old Ewen again.
Post a Comment
Read more