Skip to main content

Today, Tuesday June 21st, Another Good Day

(Prozac 3.8 ml,  Zithromax 250mg, probiotics, melatonin 1mg)

Mike didn't want to give Ewen his zithromax yesterday because he wants to back off on how much he is getting...but he starting huffing again last night and was huffing again today. So I gave him the 250 mg today and we will see if he is huffing in the morning or not. That will suck though if he has to have the full 250 every day to keep the PANS at bay.

I went to the dr today because I have a swollen lymph node in the back of my neck that has been there for kind of a long time. I told her about what happened with Ewen and she had never heard of PANS or PANDAS. I was surprised that she didn't know anything about it. She said that there were two types of mycoplasma titers...one of them showed that there has been an infection in the past and one of them shows that the infection has been recent. If it shows it was in the past then it doesn't matter she said. I wonder which one Ewen had. I will ask his pediatrician next time we go.

I actually asked her to check my titers for mycoplasma since we were already doing blood work and she agreed.

But overall things are really good with Ewen. His tics are minimal and he can go to sleep ok at night. He has a new tick of twitching his nose and I wonder if it has to do with Prozac since I read about how that can cause facial tics. So I started to very, very, very slowly bring down the Prozac again.

He is very, very happy at camp and having a great time with his friends there. They are sword fighting every day with pool noodle swords, and playing D&D. It is a nerd dream camp.

My youngest is having melt downs every day out of the blue. Wish me luck with that one.


Comments

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...

Still Chugging Along

It has been almost a month now since the terrible effects of the prednisone.   This morning I gave 50 mg hydroxyzine and 500mg of phenibut and she still said she wasn't feeling great at 11:30am. So I gave her 3 droppers of Valerian Calm, which seems to offer a small boost of happiness sometimes.   I stopped her 5HTP and replaced it with 10mg of fluoxatine. But yesterday she said she was having a hard time peeing. So if that happens again we will have to re-evaluate.   After she is comfortable on an SSRI I want to start the minocycline antibiotic, but I don't want to do that until I get her SSRI support up incase the antibiotic makes her feel worse I read minocylcine can have negative psychiatric effects for some people). I have maxed out her supports with the phenibut and the hydroxyzine and have nothing left to give if the minocycline does something weird neurological too.  So to support myself, I took 20mg of fluoxatine (prozac) last night and feel w...

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 o...