My 16 yr old is seeing a therapist & is on meds, but still won't go to school, & won't talk abt it

[VBMom]

It's been about 10 weeks since he started on medication. It seemed to help within the 1st month, but then he spiraled and now he seems to be in an even worse funk. He's normally a very bright and diligent student who is well liked by his teachers. Now he feels like he has no friends and there's no point to living. He's lost his resilience in dealing with day to day stuff. We finally informed the school and they will be very supportive. But my son will rarely engage in conversation about it and has missed 7 days of school in the last 2 1/2 months. We are at a loss as to how best help him.

[Nick-RO]

Hi there @VBMom and welcome to the ReachOut forums.  

Before going into your post, just wanted to make you aware of a couple of things.  First-off, I had to make a small change to your post to make sure that it is in line with our community guidelines - I hope you don't mind.  

Also, just wanted to let you know that it appears that you are not in Australia, where we are based so we can't point you in the direction of any practical resources or services.  In saying that, the pain and issues that you describe are really universal and I am sure that our community can offer you support and inspiration during this really challenging time in your family's life.  You are so welcome to join us and I am super happy that you found these forums!

With all of that out of the way, I just wanted to let you know how moved I was by your description of the situation that you and your son are in at the moment - I can only imagine how tough times are for you right now and you must feel drained by everything that your son is experiencing.  The feeling of 'one step forward and two steps back' is such an emotionally confronting situation to be in as a carer - especially given the levels of empathy and compassion that shine through in your post.  It is only natural that you should feel at a loss right now.

There is a member here @Schooner who has spoken so amazingly and informatively in the past about their experiences with some of the issues you describe (such as starting out on medication) and I hope neither of you mind, but I have tagged them here because I think that their take on this would be really useful.

I was really heartened to read that your son is getting support from a therapist.  Have you talked to them about the recent changes that your son is experiencing?  Do you think that talking contacting them and asking about these issues could help?

[Schooner]

Hi @VBMom,

It took 12 months for us to get my 15 year old stable on medication. That's scary but I think it is better you know it up front, and maybe that your son knows it too.

My son (and we did too) thought when he started meds "Right, now we will see improvements". Usually there would be some good signs at the start, so our hopes would be dashed when the side-effects kicked in. Well, the side effects from these meds can be significant, and unpredictable. What works for one person is a disaster for another. We had meds that turned him from depressed to manic; that made him more depressed; that made him so sleepy he fell asleep on the kitchen floor while I was trying to get him ready for school; and that dried up his intestine so much he bled when he went to the toilet (a LOT of blood). Hopefully your experience is better. Some kids get lucky with their first meds. Yes, for our son the effects did not kick in until about a month.

Each time we stopped one and started another took months. You have to wean the kids off, and then start slowly on the next meds. Worse than that was the emotional cost of starting again (on all of us).  My son lost faith in his psychiatrist and in the meds, it was a real effort to keep him taking them. If I were doing it again I'd make it clear to him: this is a trial, it might work, but maybe it is not right for you.

Another thing I'd do is be clear with the medical team about what is going on. They will continue with a medication until it is clear it is not working, so if you think it is not working tell them. They don't see your son everyday and night like you, keep a diary, watch his behaviour, and tell them. People on meds say lots of odd things (frankly, they lie about some stuff too), so the medical people discount some of what they hear. You need to be the backup for your son. 

My son avoided school too, effectively missing most of one year. I was determined that he should stay in touch with the school, and except on really bad days I would take him. There were plenty of days when I thought getting him up, dressed, and into the carpark at school was a success. He didn't get out of the car, but that's OK. There were slightly betters days when I'd get him into the school counsellors office, and he would spend a couple of hours sitting in reception there, just playing video games or whatever kids do - no school work. I refused to let him play on his computer at home during school hours, so he knew if he wanted to do that he had to go to the school counsellors office. It was a powerful incentive for him.

Gradually we got his meds right. Eventually we got the product right I think, but the dosage too high. That means his mood was OK, but he was too sleepy to function properly. Since then we have been tapering off, and he is getting better and better. He has not had a day off school since 11 August Yes, I remember the date! He is on a mix of 3 meds now, but 2 of those are very low doses. Probably we will drop down to just 2 sometime this year. 

My son lost touch with most of his friends too. We did our best to keep him in touch, but when he is depressed he does not want to be around them. It is a delight these days to see him reconnect with his friends, and make new friends too.

Hang in there VBMom, it is hard work. Try to get some backup for yourself. My son really likes his Aunt (my big sis!) so she provided some valuable time out for us.

Cheers

[Treadwell]

Just for some background: My son is 17 and has been living with Major Depressive Disorder and Anxiety for the past 3 years. He self harms every month or so, and has tried to end his life twice.

We changed doctors a few times until we found a good fit of psychiatrist/psychologist. He doesn't want to see the school counsellor, which is fine. He has been on many different combinations of medication, none of which seem to be correct; yet.  We even tried a DNA test to try and get it right..Still waiting to see if that medication works.

We reduced his subjects at school from 6 to 4, but still there are days when he just cant make it out of bed because he is so sad/scared. He spends all weekends at home; in bed, mostly on the computer/xbox, sometimes reading or playing ukelele (bought when he was in the psych ward-best $10 investment ever), communicating with friends on social media but never in person.

Like your son, mine also wont talk about anything to do with his illness. What has helped me is:

• Looking after myself. MOST important thing. If I'm not well and strong I'm no use to him at all. For me that's exercise, yoga, meditation, gardening, walking. Having short breaks when possible (husband and I tag team). Reaching out to support networks; friends, family, Carers.org.
• Education. Podcasts work for me. When I am exhausted its tiring to read, so I just listen. RN: All in the Mind, and No Feeling is Final give awesome insights to what its like being inside someone's head who is dealing with a mental illness.The somewhat grimly titled Procrastinators Guide to Killing Yourself; most useful book I've read on the subject. 
• Humour. TV shows. Funny podcasts. Its like going out with a group of really fun friends when you cant really leave the house (sad I know!). 
• Having a nice home. We are home a lot because he cant go out. Having dinner together is non negotiable. We each try and have an anecdote or a story to tell at dinner time. 
• Communication. My husband and I were initially on very different paths with my son's illness. He was all for getting angry and forcing him out the door to go running. I made him go to all the psych sessions with my son. Now my husband goes to the school counsellor in lieu of my son! Now we are more of a team its much better. We talk often about how hard it is, how tired we are, how sad we are. We try and recognise when the other is getting stressed out and remind each other to breathe. But it took time and patience and acceptance, and its still by no means smooth sailing all the time.
• Accepting that this is how my son is at this point in time. If I try to 'fix' him, its not unconditional love; or trust that he can find a way to live with this. It devalues his unseen daily effort to just get out of bed. Understanding that we don't need to talk. He talks to his psychologist about all that stuff. A lot.  Its enough. Its fine just to lie in bed and hold him. Or lie and read a book while he plays games. I think this is what he needs the most when he is really really sad. I cant fix him, he needs to do that. I just need to be there. Trust and hope that he will take that first step one day, but it has to be his step. Very hard. Lots of patience required. Bucketloads.
• Identifying who owns the problem. Letting go of our expectations for school. Panicking about him failing school is actually our problem. He may not finish year 12, but he needs to get better-first and foremost. School can happen later. This has been hardest for my husband. Having said that; on bad days I take him up breakfast-blood sugar makes a big difference. We celebrate each step; eating breakfast, drinking tea, getting dressed. "How about we just start with eating? Then if you can get dressed, do it. If not, its ok" If he gets halfway down the road and has to come back we celebrate that he got that far. If he gets to school 3 days in a row we acknowledge what an achievement is, how hard it must have been to do that, what demons he had to overcome in his head to get through the day; the negative self talk, public transport, the strangers, the students. etc. Subtly and minimally though, as like we said-he doesn't like to talk about it.
• Words to use: I say "Are you safe?" "How do you know?" "What will you do if you are having thoughts that are not safe?" "What will you do today that will help with the sadness/fear?" "Be kind to yourself" "Im sorry that it got so bad you had to hurt yourself, it must have been a bad one". Active Listening: " I feel... when I see you...because..."
• His younger sister. She is on her own journey with this one but she shares a common language with him. She drives him crazy much of the time but can make him laugh when no one else can.

We are not very good with the Xbox. We let him play when he doesn't go to school. Hats off to the writer who doesn't let their son play on school days (!). We wanted to do that but never felt strong enough because he seemed to need to play games to stay...  Sometimes it feels like emotional blackmail; he needs the games to give himself a break from the negative thoughts in his head, so if we stopped them-then we risk the elephant in the room-The thing we are all terrified of. He finally does it- the end. I cant even write it. Sometimes I wonder if we are too passive, too accepting, but none of the alternatives seem to stack up when I think about that ending.

I hope some of this helps you. I think writing it down has helped me! 

BTW administrator; we are an Australian family who has been living overseas for the past 5 years-returning  next year. Hoping that the son can finish the routine of school in body only if not in marks. Hope that qualifies me for a post!

[Schooner]

Good post @Treadwell,

I'm going to look up some of those RN podcasts. Actually, I've never listened to a podcast before (I've never podded?) It's about time.

Full marks for your formatting - dot points and bold highlights Thanks for putting the effort in!

Writing it down helps me a lot too. One of the lovely RO's will no doubt confirm you are welcome shortly, but I found your post worthwhile.

Can I ask if the DNA testing helped? I haven't heard that approach before. 

Cheers

[Jay-RO]

Hey there @Treadwell and welcome! You are more than welcome to post and share, it's more that we can't offer Australian-based supports to those outside of Australia, but our many amazing users absolutely have some wonderful advice that can be helpful to anyone
It seems like @Schooner beat me to the welcome with their fantastic post.

I wanted to thank you both for sharing your stories. It can be a real struggle finding the right person and the right meds to help but as the saying goes, there's always a light at the end of the tunnel, even if you can't see it

Thank you again for sharing your wonderful advice! I'm sure it will be helpful to any parents going through similar things

[Treadwell]

Hi Schooner

Im glad my post was helpful. I have been trying to find a group of people to talk to who are in a similar situation to me, so this seems like the next best thing! Seems like a good place to share some insights, resources and ideas...

I can really say if the DNA test recommendations work as its not 7 weeks yet since we changed the meds accordingly..And still phasing out the previous med (Cymbalta)

Basically it told us that our son does not metabolise many of the depression medications available, which figures. He is apparently an 'intermediate metaboliser' for the latest (Agomelatine).  If you are interested; the site is mydna. It costs $99, you take a cheek swab, send it off and you get a report in the mail saying all the medications that can or cant be metabolised by your loved one. Worth a try we thought! Our current psychiatrist's plan is to work his way methodically through the list.. so fingers crossed.. As you said in an earlier post; it takes so long to phase the old meds out and the new ones in, and even then you never quite know..! We went too quickly phasing out the last one and he took a huge dive down into the pit which was pretty scary, so now we take it nice and slow...

I found a really good website today from NZ; Mental, which has stories written by people suffering from mental illness. One of the stories again reminded me of the importance of celebrating small things-and appreciating the effort it takes for my son to just get out of bed..!

Hang in there everyone!

[Treadwell]

Thanks Jay-RO! Wonderful to find you guys...