Well, I never wanted to be part of this group, but here I am! My son is 19, diagnosed schizoaffective at 16 years old. It has been quite a WILD ride as you all know. As an advocate, I have to tell you that I demanded Clozaril to be given to my son (with MUCH resistance) and it has been the BEST experience so far. My son was not manageable and spent the last 3 years in psych hospitals and treatment centers. His case is severe and he was not very functional and every. single. medication. was tried to no avail. I read a NAMI article https://www.nami.org/Blogs/NAMI-Blog/March-2017/Taking-Another-Look-a-Too-Often-Forgotten-Treatmen and was intregued with this ‘hug trend.’ It is quite early to give a in depth outlook on my son’t future, but I need to find this man to give him a hug! I hope everyone is a having a beautiful day and I know everyone’s journey is difficult as mine has been such a battle, but please give Clozaril/Clozapine a second look. Peace and love, Jen
I’m so glad that you are having a better outcome with clozaril. The same for my son. Nothing was working, or at least there was nothing he would stick to, until they hospitalized him for the 7th time, and put him under a court order to take his meds. After 3 weeks in hospital to let it work in his system, we finally saw some results. For some of our loved one’s it is a life saver!
I’m so happy for you and your son! My son has been to the hospital 11 times (all were long stays), so I understand your pain. Clozaril was never mentioned by anyone in over 3 years, but I always do my homework - I just wish I would’ve demanded it sooner. Clozaril is such a miracle and I pray that all his labs come back clean. So far, so good! Have an awesome day Leiann! Thank you for your comment and support - it means the world!
I’m so glad Clozaril is working for your son. My son is 39 and I’ve tried every medication on earth and nothing has worked - basically since his teens. With Clozaril/Clozapine, he started laughing like a hyena for hours on end - when there is nothing laughable. I researched the uncontrolled laughter and found that there is no cure for it - it comes and goes. At the same time, I ran across an article that mentioned the possibility of Clozaril leading to pancreatitis, so just a “heads up”. There is no way of describing the “angst” that this disorder causes to the family and I’m a single Mom with no other help. He sits in the garage, smoking cigarettes continuously - as many mentally ill do - but I noticed that it threw his white cell count w-a-y high (from his lab work) and he dropped a lot of weight. He may stay awake for 40 hours at a time and then sleep for 7. He was weaned off of Clozaril and is now on Geodon and other stabilizers. I wish you all the best - since each situation is different, most outcomes are different. I’d just love some peace and quiet for at least a little while. Good night all!
Thank you pookey52! I’ll keep an eye on his labs! Yes, the amount of stress I’ve endured has been beyond imaginable. We live in southern cali and actually have a pretty good county system in place and he’s currently receiving valuable help, more than we received with private insurance. More importantly, he wants to receive this help, thank god! I feel for you and so understand needing some peace and I pray that you receive some soon. It’s going to be a long, wild ride and I’m as prepared as can be. Hope you got some sleep, Jen
So glad to hear that your son actually wants help. That is a major blessing! My son has been back and forth as far as accepting help. The only place he will go with me is to the doctor because he knows he has to have new prescriptions but he won’t even carry on a conversation with the doctor. We’re in Florida and my son is on Medicare but still carried on my private insurance as an adult disabled child. That has helped tremendously but many people don’t realize that in most states, if the diagnosis/disorder occurred before a certain age, they can continue to carry their children on family plans (with documentation and approval through HR). I hope all continues to go well with the meds - me, I just power nap when I can and plunge onward. Take care,
He actually never wanted help before the clozaril stabilized him and he became clear. He now knows that his mind is playing tricks on him - he never knew that before. I didn’t know about the private insurance, so that is awesome to know. I thought nothing would help my son and was desperate before I demanded the clozaril and I was and I am still nervous about his labs and the med not working. He’s only 19, so we have a long road as you know so well. Thank you for your words of wisdom - lived experience is most valuable to me! Take care! Feel free to give me advice any time! <3
Been a long time since I have been on here but wanted to check in on you @skyler.hayden and see how you and your son are doing?
Oh, your so sweet! Hanging in there with the ups and downs of this illness, but my son is still stable and living in our small Seal Beach, Ca. community and thriving best he can! He’s made some friends on his own and his brother, Skyler takes him out skateboarding and for adventures every weekend with tons of friends - they all love and support him. The beach is such good therapy and he’s learning how to skim board and loves swimming in the ocean. We got a dog, Ollie Rose and wow, what therapy she is - amazing! Still no hospital visits for 14 months with the Clozaril. He presents with socially odd behavior and odd off topic comments, but I think this will always be the case. People are thrown off by this behavior and chalk it up to him ‘tweaking’ (being a meth user) which can cause confusion and arguments as he thinks he’s engaging perfectly normal. I’m working on his social skills, but I think I’m going to see if he’s willing to tell people that this is due to a disability. I’ve asked his team to please help him with social skills as well, so hopefully this will be reinforced. I tell him everyday that if he is stopped by the police to ask for the MET team immediately because we know many SMI individuals end up dead by the hands of the police and this scares me to death. He is not mean or aggressive at all, but I never push or instigate any argumentative behavior. He tells me he loves me about 100x a day which I love. My BF says that he is lovable and he is. I filed for IHSS services and we have an appointment on Monday. Hopefully he will be approved, then I will be paid $13.50/hour for services that I provide for him to remain safely in our home. I’ll take whatever I can get as I spend all day, every day advocating for him care and providing care (although I was told advocating is a mom job and IHSS will not pay me any hours for this). I do know that without Clozaril my son would sadly probably be in a group home or a lock-down as his illness is severe. I pray every single day that he doesn’t become immune to this medication or that it stops working - I do still hold my breath! My son is living his best life and Skyler often says he wants his life, LOL, but he really is spoiled!
Please tell me how you have been!
Oh and NO weight gain, but he has coughing at night which is a common side effect.
Oh I’m so happy to hear that all of you are doing so well and if I’m understanding this right, it sounds like he is being open to help. Our sons sound so similar which is maybe why I kept wondering how you were all doing. We are doing well. Mathew had been on Clozaril for 4 (?) Years now. It’s a blur so not positive. He has come so far and I see improvements even now. I hear ’ I love you often too and he is able to touch/hug again, though not the same as pre-illness. Still no friends so just me. Has his sense of humor back and most importantly is happy with this life he has now. We are in Ontario Canada and there is pretty good support for people with disabilities financially. My biggest worry is a run in with police as I fear it wouldn’t go well as alot of his previous delusions were around police/government. I am honestly not worrying about things that haven’t happened though. I am just soaking up the peace we have in this moment We have all on here lived through hell so we know how to appreciate the good times. Well, you made my night knowing that you all are well! Will keep all fingers and toes crossed that we all stay that way! Big hugs!