Hello everyone. Our son Adam, 36, was diagnosed in February 2024 with OCD. His previous diagnoses were ADHD and GAD in elementary school. He earned a bachelor's in history but never taught. In college he had a panic attack that led to diagnosis of mild Asperger's, which now is termed ASD, but no particular treatment was recommended at that time. His pediatric psychiatrist later said that Adam was past the age of his practice, so we were left, basically, with nothing in our area for adult treatment in these diagnoses.
Adam was working as a grocery clerk, night shift, in November 2023 when he had a panic attack with catatonia. Taken to E.R., tests run, no history of alcohol/drug abuse, finally given Ativan, which relieved his symptoms. Further treatment was recommended so he was seen at a m.h. facility and not deemed ill enough for admission but signed up for outpatient intensive therapy. He was too anxious to drive so for 2 weeks I drove him to these GROUP sessions. After 2 weeks with only escalation of his anxiety and NO meds prescribed, he was worse so we dropped it.
He went to a m.h. clinic for "limited" treatment, seeing a psychiatrist and med nurse every 3 weeks and they've tried numerous meds. He became suicidal and was admitted for a week. We've still got all knives and scissors locked up or well hidden.
Presently he is taking Prozac 40 mg., doxepin 25 mg. for panic attacks, Ambien ER 12.5 mg. for sleep, and this past week Lamictal was added. The past few days have been SO MUCH better, but today his anxiety spiked. He wanted to drive himself to see the psychiatrist this Tuesday, and I agreed if he felt fine to do so. Yet, thinking of it today, he began getting more worried. On Monday his dad will ride passenger while he "practices" driving there, so he'll "know" he can do it.
What does MOM need? How about a week away from it all? I LOVE my son, but I want my life back -- I want HIS life back too! I'm sure there's no magic pill -- bought the book "Breaking the Rules of OCD" -- but a psych you see only every 3 WEEKS is nothing. Adam signed up for NOCD therapy online but after his introductory session, he was told "Too high volume of patients to therapists right now, we'll get back to you." A friend told me to talk to a lawyer about getting him on SSDI -- but my heart says he CAN'T have this forever with no hope -- surely?
Whoever reads this and answers, God or the Universe LOVE ya,
CatBlueLady
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Hey I'm so sorry you and your family and your son are going through this. The hardest thing with OCD is finding the right help or medication. Let's face it therapy is expensive and so is all of the medications. But I think it's good to take every day with OCD as it is. There are things that will trigger OCD l think it's important to know what they are and make people like your family and friends aware of them to. I have struggled with OCD for years. My mother and I have had plenty of rough times. I have started ERP Therapy three times a week with a therapist. Thankfully I found one that I love. They say the best thing to help with OCD is the combination of therapy and medications. That can be the hardest part. Everyone's OCD is different not any form of treatment is going to help everybody. I think for me it's taken a couple of months to really see the huge affect and improvement this therapy has had on my life. My friends and family member's can already see a difference. The thing with OCD is we like to put people in our cycle with us. Like for example if I got to the grocery store with my mom I find myself rushing through the store ready to get in and get out. So I make her rush. But in reality I'ts almost like I'm giving her my OCD because then she get's anxious about me. With OCD alot struggle and we want people to talk to or help us make sure it's going be ok and get better. But the truth is my mother is not a medical professional so her giving me advice is feeding me into my cycle. I think as a mother you care about your son and want best for him. I think that's great he's starting to want to drive and do things for himself. Baby steps is the way to go through this. But everyone needs a break from this. Let's face it OCD is annoying and exhausting for all of us and everyone around us. Not sure if you've heard of the Hiearchy of Fears List. But it's a list of fears you have and your rank them in a category regarding low to high anxiety. I'm currently working through my list and have started to see fears marked off. So I'm not sure but I would recommend trying that and try working on a fear of your son's a day or once a week whatever he's comfortable with. But the more you work on your fear's consistently the better your son will be. We have to learn how to be uncomfortable that's life. But if we learn how to deal with it and conquer it we will all feel so much better in taking the power back away from OCD and back in our lives. But always remember to take care of youself. Your son isn't going to always be receptive of it. But our mom's do so much for us, let's remember that there human to and can use some help to. I really hope your son can get the help he needs. You sound like such a supportive mom and I'm sure he's so lucky to have you and him feeling so much love and support during this time. I wish you and your family and son the best. Please use the forum for advice and help. Take care.
Thank you SO much for your kind reply, LiveOutLove. That gives me a lot of hope. Adam will be losing his insurance coverage at the end of this month, but his sister is going to help us get him on the ACA, Obamacare. Once that's taken care of, I'll see what I can do to get him therapy more often. We've got to.
Something he asked me to write is, What can you do when you wake up at night and the thoughts start coming at you?
My idea was to jot them down in a journal, take another half Ambien, and go back to bed. He is sometimes able to do that. Have you had this happen to you, and how did you cope?
It sounds as though he has fallen through the cracks. I'm not personally familiar with the American health system, but I know that getting treatment without money is difficult. I've heard a bit about Obamacare, and that could be a good option.
It's important to understand that OCD is a fluctuating condition. And that treatment involves a daily regime of management. I suppose it could be compared to weeding a garden - just don't let those weeds get out of control and rampage across your plot!
I can't really comment much on your son's medication, as we're all different and respond differently to different drugs. Prozac is an SSRI antidepressant and SSRIs are the first line in treatment of OCD. I take another called sertraline, at a high dose, and a supplement of an antipsychotic called aripiprazole at a low dose. That helps a lot - I'm not psychotic, but antipsychotics at low doses can be used to boost the effectiveness of an SSRI. (I should add that the antipsychotic sulpiride should NOT be used, as it leads to rapid weight gain.)
On the whole, I don't think group sessions work for OCD - one-to-one is needed. One alternative is to use self help books with exercises - he can adapt these to his own needs, or perhaps you and his dad can help him do that if it's difficult for him.
CBT, or cognitive behavioural therapy, and ERP, or exposure-response prevention, are essential. I don't know much about autism/Asperger's but I appreciate that it could make it difficult for your son to alter rigid ways of thinking, and it might be worth getting some information from experts in this field.
But it sounds as though he's already using CBT techniques! In deciding to drive himself to appointments, and having a practice run with his dad, he is exposing himself to stress and learning to deal with it. That's CBT and ERP!
I think I should add that frequent appointments with a psychiatrist aren't really necessary. Psychiatrists are qualified as doctors, and they can monitor and prescribe, but what really helps is a psychotherapist that uses CBT and has experience with OCD.
That leaves you - and I know how hard it is for friends and family of OCD sufferers. I've certainly put mine through a lot of stress. I'm sure that you really need a break from it all!
Try not to put your own life on hold - make sure you make room for your own interests and activities, and get out of the house when you can. Keep in touch with friends and family. It's perfectly possible for your son to get his life back - and for you to get yours too!
There are books aimed at carers, too. One particularly helpful book is The OCD Workbook, which explains OCD and has CBT exercises that could help your son, and an extensive chapter at the back for carers.
It also might be worth checking out a substance called Inositol. I haven't tried it myself, and it isn't yet a gold standard treatment for OCD, but there have been some promising studies. It's a natural substance, has few side effects, and can be bought over the counter in some health food stores and drugstores. High doses are needed - about 18 g a day. It has had good results with some particularly stubborn cases of OCD.
Thank you for your kind reply, Sally. I got a copy of "Breaking the Rules of OCD" which has exercises in it, and we have read parts of it together. One problem that Adam has is that he sometimes declares that he doesn't have OCD; "This is all ME being stuck in my own head!" So far as self care for me, I'm now focusing on making each day the best it can be, for my son and for me. I still work part time so that gives me "time away," and I walk on my treadmill for stress relief and fitness. As soon as we get him on insurance coverage under the ACA, we'll look for an OCD specialist therapist who can see him more frequently, even if only by tele-health on laptop. Again, thank you.
OCD is a shitty condition. I take 80 mg prozac, 2mg of klonopin and adding buspar to hopefully cut down on Klonopin. I'm also seeing a therapist for erp. I'm 66 years old and it got way worse after my third child. It came back horribly this time and it took 7 months to start feeling normal again and not obsessing. I have to accept I have a mental illness that will never go away and I require more drugs than is use to when I was younger,
Thank you for your reply, Beth. I'm glad that you're making progress, even after so many months. I'm looking forward to having Adam feel more like himself, more often.
iocdf.org has a provider resource directory you may want to check out. There is also a section on their site that addresses OCD with Autism Spectrum Disorder.
Thank you very much, Natureloverpeace. The clinic where Adam is seen told us of a site NOCD . com, which is where he had an intro therapy session but then they said "Too many patients, not enough therapists, will get back to you." I'd be delighted to find help on Int'l ocd . org.
The IOCDF does livestreams on Tuesdays and Wednesdays that both you and your son may find helpful. They are recorded for later viewing if you can’t catch them live. They also started a new one recently for loved ones of those with OCD. That one is once a month on Thursdays. You can find info for that on the site. There is another group that meets on Zoom the second Saturday of the month. It is led by an OCD specialist who has OCD, and his mother who is an awesome advocate. The group starts out with the OCD specialist interviewing his guests. The guests are a person with OCD and their loved one. Then it opens up for people to ask questions. A couple of days later, you receive an email with the resources that were talked about. The group is geared toward loved ones of OCD. If you’re interested in joining, just reply to this and I can send you the email address of one of the group leaders. She will send you the link to join. The link changes each month. This is a free group.
I work for NOCD.com We are an online therapy platform that only specializes in ERP for OCD, and we have helped thousands of people. We go through an intensive program that trains all therapists to use the gold standard of therapy - ERP. We accept all insurances and for those without insurances we have a payment plan of $95 a week. We do recommend that initially, clients start out twice a week. You can go to NOCD.com and call them and tell them Scott Silver recommended you -- you can get help for your son! I just saw your post above -- please call back and explain that your son is a severe case and that he truly needs help ASAP-- and we will get him on the move up list. If you continue to have problems, reach out to me.
Hello, Mr.Silver, again thanks for your help. We spoke with Aravna for a 15 min. free call. She said that since he has made a suicidal attempt within the past 2 weeks, he is not eligible for therapy at NOCD until APRIL 30 -- unless someone cancels in the meantime. I perhaps should have specified that it was not a very serious attempt since he was trying to strangle himself with a bed sheet using a leg off of an old chair -- obviously not going to work since you'd pass out before it asphyxiated you.
Anyway, that's what she said. So we must wait a month? We told her that you sent us. By April 30 he will be off Cigna insurance, possibly on ACA or if not I will private pay. This is terrifying since we've already had to lock up knives and scissors and now must wait a month. I know there's a high ratio of need to therapists but this is agony.
Another day, another problem. This morning Adam called 911 on himself because he was tempted to cause a fire or explosion with canned air that you use to clean computers, and kill himself? I don't even know if that would work. When my husband woke me, he said Adam had just walked outdoors at 6:30 and called 911 and was outside talking to cops. I got dressed and went out, and they were politely talking, waiting for the ambulance to arrive.
After he spent most of the day at our local E.R. he was transferred to a regional hospital about an hour away. We hope for the best.
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