I've tried to write an update three times this year. It's just been too hard to put things into words. And I haven't been able to.
First, no one has died, to put that to rest.
But both my kids are seriously depressed and Luke hasn't been in school since mid January. He's on homebound instruction.
About Luke. Last time I posted I explained he had trouble with 6th grade middle school and had developed TMJ. We treated the TMJ with 25 sessions of physical therapy and after he stopped going to school, his pain is mostly gone.
He went through testing with a psychologist in December. She diagnosed him with anxiety and depression and slow processing speed (and a high IQ otherwise). Not on the autism spectrum at all. She confirmed ADHD.
He's been seeing a therapist, and a nurse practitioner for meds since around October. In November we put him on lexapro. He's also on buspar for anxiety.
He was basically off school with TMJ from October through November, then went back to school on half days (8-11:30) after Thanksgiving.
In mid January, I caught him one night while we were watching TV holding his breath. I asked what he was doing. He said he was trying to make himself black out--he didn't want to live, and if he could push a button to make himself die and it wouldn't hurt me or his dad, he would do it.
Mark and I went to see his therapist the next day and talked to him about this. The therapist agreed that Luke's primary stress was coming from school, even on half days--Luke was still having TMJ pain around 6-7 (on a scale of 10) every day, and some mornings he didn't want to wake up.
So we all agreed to pull him from school and put him on homebound the rest of the year. I also started weaning him off lexapro very slowly--there's a black box warning for kids on SSRIs, that they can cause suicidal thoughts. Luke says he had these thoughts before lexapro, but he never expressed them or did anything like hold his breath. He just took his last 2.5 mg dose yesterday.
We did a genetic test for him (and Sophie and me) to see which drugs work best, and we all three have a short gene allele that is incompatible with SSRIs (meaning serotonin from the drugs do squat in our brains). The SNRIs are supposed to work, but I've had terrible experiences with those (so has Sophie--more on that).
I asked to have Luke start wellbutrin last week, and he's on a very low dose, bc it's in his "red" column, meaning he could have side effects at higher doses. Wellbutrin is the only thing that works for me, and his and my gene profiles are very similar. Also he craves things that increase dopamine (like video games) and I think it may be what works. We will see and only time will tell.
But he is not out of the woods. My sweet son does not want to live a long life--he does not want to live to be a teenager or a grown up or live after Mark or I die. He just told us this last week. It is terrifying and heartbreaking.
He has severe social anxiety and is highly sensitive to sounds and smells and light. I have no idea what we are going to do for 7th grade. We are taking with two of the private schools in town, but not sure if he'll even be able to handle either of them. He may have to be homeschooled.
I have called a friend of Mark's who is a psychiatrist who does TMS (magnet therapy) and also does ECT. I went to high school with his office manager and told her everything. They are checking if they can do TMS on a 12 year old. Honestly I don't know if Luke could handle it--it is loud and thumps the head.
I'm also going to get an ECS device from Alph a Stim and try that on myself, and if it helps me, then see if Luke will try it.
Luke sees his therapist every 2-3 weeks, but he won't talk about serious issues. He clams up. Which from what I've read of other parents with kids like him is the usual way with them. We are looking at possibly switching therapists but I don't know if it will help.
He has sworn he has no plans to hurt himself, and my therapist says kids his age can have feelings of suicide but no actions. My concern is that we have to help him now, bc the longer he's depressed and the older he gets, he could figure out a way to act. I check his phone and search history all the time for if he's looking for ways to hurt himself. And he hasn't. He doesn't know I'm checking his phone.
He does have happy moments and does laugh. He has had a friend over to spend the night a few times this year--but it's just exhausting for him. And he's spent the night at my sister's with his cousin once and had a great time. So he has some fun. I think though that in the background there is the black dog of depression always there.
Now for Sophie: She has been depressed since last May. We took her off her migraine med amitriptyline, which is what I thought was her issue. It took from May to October to wean her off it. She started seeing a therapist last fall and also a nurse practitioner for meds.
The therapist hasn't helped her. She wasn't a good fit. In March we tried an SNRI antidepressant, Pristiq, based on the genetic testing results. It was a disaster (Pristiq was awful for me, as well). She was exhausted and lethargic to the point she couldn't function or do any homework for almost a month. She was only on Pristiq for 5 weeks, and 2 of those were at 25 mg (other 3 weeks at 50mg).
The NP had her try trintellix next. Another disaster. She took it for two days, and both days threw up 20 min after she took it. Not a side effect we were willing to deal with. Those two days were the start of her spring break. And she was coming off Pristiq. So she had to deal with withdrawals that week as well.
Now she's just back to being depressed and sad. We aren't willing to try another medication while she's in school. She's going to see the NP in June. And she's seeing a new therapist in June, also.
She does better when she's with her friends. But she can't be with them 24/7. She also has times when she's fine, but she has weeks when she's just down and struggles to smile or have any joy at all.
Her grades have slipped this quarter. She'll probably get a couple of Bs and maybe a C+, she said. I told her it's ok, she's doing the best she can, and her semester grades will average out better and she can still get into a good college even if she doesn't get straight As. She puts so much pressure on herself. She's in the #1 school in our state, and they put a lot of pressure on the kids, too. But there's no where else she wants to go. So she's sticking it out.
But she keeps going because she has a strong work ethic. And she and I talk openly and I stay on top of how she's doing. I worry about her, but I know she'll be ok. I'm getting her help it's just going to be a little longer until we can get there.
We are going on a family vacation to Florida at the end of May. Hopefully it will be a fun trip for us all, a "vacation from our problems." We're driving to Daytona Beach, staying for a few days, then going to Orlando and doing the parks.
I started seeing my therapist Julie again in January. She's a miracle worker. She has helped me a lot these past months.
I'm taking the same drug cocktail as ever. I miss Vyvanse though, but it made my blood pressure go up.
I've gained a ton of weight. I weighed 204 this morning. I'm freaking miserable and I hate it.
And for the past week I've had a constant, horrible headache. So I've been checking my blood pressure and it's sky high (even off Vyvanse). So I'm going to the doctor tomorrow and will probably have to go on BP medicine. Oh joy. I'm sure I'll get a lecture about my fatness. I haven't seen him in 3 years and I'm at least 40-50 pounds heavier now than I was then.
Mark started eating vegan months ago and goes to the gym all the time. So he's doing his part to stay healthy. Which is awesome. I need him to stay around for the long haul.
So that's the drama and the insanity that is my life. It's not ok and it's not happy and I cry all the time in the car and wonder what the f*** I did to screw everyone up so badly. Now I'm just doing everything I know how to do to fix it.
