Skip to main content

Still Not OK

(Week 12 of Prozac, 3.7 ml's given at 4pm)

Ewen is still dealing with agonizing tics while trying to fall asleep. I am slowly bringing his prozac down from 4ml's. We are at 3.7 now. We stopped giving him the guanfacine at night 2 days ago and it helped a little. But watching him tonight, stick his butt in the air and bury his face in his hands in his pillow and huff and huff, then kick around and ask me to sit on his legs so they stop moving then kick the air over and over while flexing his foot muscles repeatedly... huffing every second or more...for me is is exhausting to watch but he wants me there, in the comfy chair next to his bed. And I feel like if he is suffering through all this then I need to suffer through it with him since I am responsible, and must not turn a blind eye to what is going on. When he is finally asleep I feel a rage that I don't know what to do about this. It is all still better than when he couldn't go to sleep because he was so anxious because now at least he is not in pain. But the discomfort is outrageous. I finally had to leave the room tonight because I couldn't bare to look at it anymore. He went to sleep shortly afterwards.

During the day he huffs and tics but he is in good spirits. He does well at school then comes home to his safe place, his computer where he plays agar.io and talks to kids from all over the world  on Skype. I hearing him ordering everyone around...go left, top right! Pop split, 3...2....1...go!!
So my despair at his condition is dissipated during the day because he can go to school and laugh and smile and do his homework. Then I'm shocked again at night at how bad it is when he tries to actually relax.

If we try the guanfacine again, maybe it will work again but what is the point if we are doing prozac to get him out of his anxiety and depression, then the medicine designed to cover up the tics from the prozac makes him depressed?

So the plan now is to keep brining down the prozac and to possibly start him on the guanfacine again and see if the depression goes away after a couple of weeks...which sounds bad. But if it does, and if we have a happy kid with no tics, that would be wonderful. Hopes keep getting dashed though.

I wish we could just stop the prozac but I don't want to go back to where we were in the beginning. Even though these tics are horrible they are still better than the hell he went through before the prozac started working. BTW, I've gone off the Buspar idea because I read something else that like other serotonin drugs, it can cause involuntary movements as a rare side effect.

On  side note, my therapist keeps cancelling our appointments and I started to get the message that she doesn't want to see me anymore. I think that I stress her out too much with this stuff! So I just told her that I wasn't going to be coming weekly anymore and I would call her if I need a random appt. She said that her heart was with me and Ewen. (This was all done through text).

Mike finds it hard to see me struggle as well as Ewen. He tends to shut down when it all gets a bit much. But he is our rock and I am so grateful for his steady calmness. Our 13-year-old with autism is doing fantastic on Buspar. It has been about 7 weeks now and I am so grateful that one of my kids is doing really well. She is no longer anxious all the time and goes to sleep much better at night.

sigh.

Comments

Popular posts from this blog

PANDAS Flare - My Oldest, Phenibut and Hydroxyzine

 We joined an online doctors group out of Colorado that specialized in PANS/PANDAS. My youngest is doing great with their protocol and she is the reason we joined. My 18-year-old with autism joined and after we got rid of her gut parasites she got very anxious. Then they gave her prednisone and she lost her mind. Now almost 3 weeks post-prednisone we are still sludging through a frightening mess of anxiety, depression and OCD the wasn't there before. I have it too now since it has been so awful with my oldest. I have to take anxiety meds to cope and I can't sleep at night after the hydroxyzine wears off. I'm in worse shape than she is, but mine is situational where hers is medical. To keep her comfortable I give her  8am 50 mg hydroxyzine and 500 mg phenibut 1pm 25 mg hydroxyzine and 250 mg phenibut 6pm 25 mg hydroxyzine and 250 mg phenibut I intersperse valerian calm drops and cortisol manager supplements between the doses. And then I pray it holds until bed time since tha...

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...

11-Year-Old Daughter Now Struggling

 Now my 11-year-old daughter has PANS. My son, Ewen, who I started this blog about a few years ago is doing great. He still has Zithromax when he has flares but does amazing on Zithromax and is back to baseline while taking that. He's happy and social with lots of friends, and doing very well with his online schooling.  My youngest though, she is 11 and she is suffering badly. This is what I gave her today: Morning Valtrex (for mono.. Epstein Barr) Vitamin C Fish oil lipothiamene Evening Zithromax 250 1/2 a Zyrtec 1.5mg melatonin disolvable 7 mg fluoxetine (She was on 5 and I'm working on moving her up to 10mg) She had been taking another antibiotic, I'm blanking on the name. It wasn't augmentin because she is allergic to that. Maybe Cefalexin? But anyway, I took her off that and put her back on Zithromax tonight because she is tanking and I'm scared. I'll call her pediatrician tomorrow and make sure she is on board with the switch. My DD is feeling stuck and wa...