Anyone Ever Make an Appointment with the Psychiatrist just for Themselves?

[slw]

Kind of a different question from the therapist.

My son was in the hospital just a couple months ago.
Like always, he came out pretty good with a med adjustment.

He continued to do well until he saw his outpatient doctor. She upped his Invega shot to 234 mg/month, took him off the 4 mg Risperdal daily & increased the Trileptal mood stabilizer from 300 mg/day to 900 mg/day.

About 5 days later (time enough for the Risperdal to clear?), he started to go downhill slowly as he stopped sleeping again. Then, he started sleeping again after about a week and kind of stabilized, but it’s not what I would call stable.

He got his second 234 mg shot about 24 days later, slept a lot for a week, then stopped sleeping like a switch was turned off. His delusions are going up & I’m seeing signs that he’s hearing things.

They tell me he won’t get much better without participating in their therapy. He won’t participate until they can get him less psychotic. So, it’s a catch 22. And, I can’t accept that this is as good as he’ll get on this much Invega with or without therapy. If so, it’s not the right med for him, compliant or not.

If he doesn’t participate, they’ll downgrade him eventually from ICT type case management to traditional case management where he only sees someone every 2 to 3 months. I’m like great - once again, if you aren’t well enough to cooperate to some degree, you get less help.

So, after that ramble, I’m thinking I’m going to see if I can make an appt with the doctor he saw in the hospital to go over what’s happened & what he thinks about the med change. Risperdal is supposed to be the older form of Invega so they tell me the increase in Invega should have more than made up for it, but if that’s so, they could have just given him oral Invega.

And, no matter how it’s supposed to work, it’s obviously not working like that for my son.

Has anyone else ever done this? He did sign a release in the hospital, but do you think I can get around HIPAA by only giving information & then asking for a hypothetical opinion?

As paranoid as my son is with his lack of insight, I don’t want to take him for an appointment if this doctor is just going to say this is the right path for the meds.

[CAAR2016]

Slw,
When my son was n the hospital and took his first shot of 234mg, they were supplementing it with 6mg paliperidone oral pill daily and kept it this way until he took he 2nd shot. but when it started having headache, they stopped paliperdone oral pill. he was also taking 500mg of Depokate.

A year ago, my son was in a good hospital in California ( Stanford) and was not taking shots at that time. they put him on Paliperdone 6m g oral pill & one pill of 450 mg Lithium Carbonate twice daily and also Escitalopan 10mg (3 pills in the morning) and Benztropine 0.5Mg twice daily. Also -Hrdroxyzine HCL 25mg every 6 hours as needed for anxiety and Gabapentin 300Mg Daily 1 Capsule 4 times Daily for side effects.
the meds combinations took off many of his symptoms and he was close to stable but not stable enough at being discharged last year in August and later become non-compliant.

I was always been able to give information and I think you can ask a general/ hypothetical opinion.

I am just curious why would they give him Risperdal pill with the invega shot instead of Paliperdone?

[slw]

When they first put him on the Invega, they gave him the Invega/Paliperidone pills in the hospital.

Then, he would come out & his outpatient doctor would take him off - they didn’t want to give him too much & have him have bad side effects. I get that, but you also have to give him a dose that will work.

The 117 maintenance does wasn’t enough, so he ended up back in the hospital & they upped his shot to 156 mg plus gave him the Invega/Paliperidone pills again to get him stable enough to leave. It worked.

Then, the outpatient doctors took him off them again.

So, round 3, he’s back in the hospital - different one this time - right after his 2nd 156 mg shot because he’s not sleeping. This time, he didn’t sleep for 4 days before the shot - or 4 days after the shot.

The hospital doctor added the Risperdone & it seemed way more effective to me, but they also added a mood stabilizer. So, with 2 changes, it’s hard to see what made the difference. The mood stabilizer is still helping. I think he would be uncontrollable right now without it.

Then, outpatient, when it’s time for the next shot, they take him off the Risperdone since they upped the shot. 5 days later, I see him go downhill. He bounced back some after another week to 10 days, but now he’s having the same pattern on the next shot.

But, he’s sitting there right now listening to music & laughing to himself. When I ask him what he’s laughing about, he says just funny stuff he’s remembering. That means he’s either forming new delusions or he’s hearing voices & is all involved in his inner world. Sometimes, he cries instead of laughing.

He shouldn’t be like that if the meds were working - I don’t care whether he participates in therapy or not. No kind of therapy, or getting out in public, or engaging his mind is going to be enough to combat what I’m seeing now. If it was, no one would need any meds.

I haven’t seen him sleep in 4 days. I’ll start getting up through the night now to check on him. If he’s not sleeping at all, it’ll only be a matter of time before he’s back inpatient - for the 5th time in 9/10 months. That just doesn’t seem right to me when he’s med compliant.

If he goes back into the hospital, I’m going to ask them to try Clozapine or something else. It’s just not right to leave him lingering in some twilight zone like this.

Edit: the case manager told me that sometimes the meds only make the illness more bearable, it doesn’t eliminate the symptoms. My son has only been with this team for 3 months. I think it keeps going through my mind because I feel like they’ve almost given up on a better recovery for him, mainly because they see so many people who are severe & don’t get better. And, they make me feel like I expect too much, and at the same time, they push my son to do things he’s not ready to do. I’m confused about the whole situation, and they have me second guessing myself and doing things against my better judgement. I think I need to make that therapist appointment I keep talking about as well as making an appointment with the doctor he saw in the hospital.

At least I have the holiday weekend to start making notes so I don’t forget anything.

[Catherine]

I have before, but I have guardianship. If the HIPPA blocks you, at least get a detailed letter to the doctor saying pretty much what you said here.

[slw]

He slept a little last night, but doesn’t seem much better this morning. He did grudgingly take his oral meds, but said he thought he had a hole in his brain & maybe that was why he couldn’t do things that other people do.

I used that as my opening to ask how he liked the last dr he had in the hospital & to suggest he would be someone good to see because he works at a hospital too & might be able to arrange it.

Someone in my support group said they had to move mountains to get it approved, but their family member got a scan done - no idea what it’s called, but I’ve read about them. So, I at least know the equipment & medical staff is local if he wants that done. I’d honestly be curious to see the results myself.

But, I’m so happy I had an opening to suggest he sees another doctor for a second opinion. I still think I want an appointment first if I can get 2 close together to explain what’s been going on - things I can’t really go into in depth in front of my son because I think it would give him the idea of going off his current meds completely, and I think they have helped some. At this point last time, he couldn’t sleep at all & every time I turned my back he was walking off or standing in the middle of our street like he was lost. I was scared to death he was going to get hit by a car - and we just recently had someone on the forum who had that happen to her son.

[Catherine]

I am so sorry that your son is unstable right now, I hope you can get in to see the doctor soon and get them to understand these latest changes in meds haven’t helped.

[slw]

Today was awful - he through a bucket of candy, then yelled at me to pick it up, then tried to keep me from leaving the house. No hitting, just holding, but I don’t like it when anyone does that.

Then, he tried to stand in front of the car - I managed to reverse really quickly out the driveway, but man is he fast when he wants to be. He didn’t exactly get hit, but the car nipped him enough when he tried to grab the door that it knocked him down.

So, I came back around, called 911 & he agreed while they were on the phone to call the hospital. He calmed down on the way, so I gave him the choice of going out to see his dad at our country property. So, we went & I walked him up & down hills as much as I could. He’s taking a bath now, first one in about 10 days, to make sure there are no ticks. He seems more like his normal self.

If all goes well tonight, we’ll repeat it tomorrow. Hopefully, the shot will be kicking in soon. He slept over 12 hours the first 5 days after he got it, then both his sleep & his mood plummeted. It finally evened out, so maybe it’ll do the same this month - but this is just too many ups & downs.

If it was not the middle of a holiday weekend, I’d have followed through with the hospital. Even on regular weekends, the hospitals here are usually full by Sunday.