Home from the Hospital


#1

If you will recall, son had been rapidly spiraling down into the abyss the last few months after he stopped taking his two major ap’s olanzapine and perphenazine. He was supposedly taking only 10 mg Abilify and it was not enough to keep him stable.

The Crisis Team came out on May 7 and as a result son was involuntarily committed. He spent a week in the hospital - I brought him home last Thursday. His pdoc, hospital pdoc and myself all agreed he needed his meds via monthly depot injection, so starting last Tuesday (6 days ago) he received his first shot of Invega Sustenna.

Son is completely on board with the injection – says he never liked taking/digesting the pills and feels the shot is less abusive to his organs and more effective on his brain. And wow, what a difference! He is sweeter, more like his old self, doing a few chores around the house, more talkative, being polite, etc. He thanked me for everything and he even gave my hand a “reiki” massage on the trip home from the hospital! And a few hugs and kisses thrown in too which was very nice.

On his previous hospital stays, son always had what I call a honeymoon period for about a week or two after discharge, then things would revert back to normal, so I have been cautiously optimistic. But I honestly think this time is different. This med is working wonders so far and I think he is really very happy to just be feeling better and really wants to prove himself. There is still work to do and we all went through hell getting him to the hospital, but I feel we are finally on the right path!

As a side note, I was shocked to learn the cost of an Invega Sustenna injection is approximately $1200! I did find a coupon on the mfgr’s (Jensen) website that after insurance brings our total cost for one shot down to $10 at CVS. If not for the coupon insurance would only pay 60% of the $1200. Coupon good for 14 injections, then I’m not sure what will happen after that, especially since son turns 26 in November and will no longer be on my insurance. Will cross that bridge when I come to it I guess.

Hope everyone is doing well.


#2

This sounds like good news! About the insurance–have you thought about him applying for Medicaid. Since he is disabled, he should be able to get it, as long as he is not working. Or maybe you are lucky, and you live in a state where Medicaid is freely available to those living under the poverty line.


#3

This is great news for now. I completely understand being cautiously optimistic, but any window of relief from the stress and negativity is a welcome change.

I’m glad he’s feeling better and I hope he can have access to this shot for many many months to come. Who know what will be happening in 14 months. You might have access to something else that will keep helping.

I’m so glad you have this window of calm and a chance to enjoy your sons company for a while.


#4

Hi Caroline - son is in the process of applying for disability. We have been denied twice and now have an attorney working on the appeal, but it sure is a long drawn out process. We only have six more months before he’s 26, so I’m getting a little nervous about it. I sent our lawyer the information about son’s recent hospitalization, hoping it might speed the gov’t up a little, wishful thinking I know:)


#5

Thank you kidsis – It is nice to have this peaceful time with my sweet boy:)


#6

i sure hope the very best for you…sending hugs and good wishes…


#7

Just wanted to say I’m very happy for you and your son. :purple_heart:


#8

SO glad this is working out! When your son is off your insurance, he should be able to get that medicaid-medicare. Please let me know of side effects ( if any ) your son may get. Maybe something my son can try. He`s been on prolixin injections for years…Great job!!!


#9

Thank you, I will keep you posted!


#10

Good to hear…sounds like he has insight and is compliant…thats the first big step in recovery, being willing to receive treatment. Good news and good luck!


#11

My son (22) is soon to be released from hospital. I don’t want him home right now due to his violent behavior. He was not accepted by the group home so there is no other alternative. My boyfriend wants to press charges and have him go to jail for a short time vs him coming home. My son wants to go to a hotel but I am not sure that’s a good option either. He is also on the envega injections (just had his first one on Tuesday.) He seems less delusional but still quite angry.


#12

I was on invega as well. I switched to risperidone generic. Much cheaper and basically they are the same drug. It is available as a shot also. Just something to consider down the line. I’m doing better on risperidone than I ever was on invega, but everyone is different. I also take the pill form as I don’t like needles.


#13

Is it possible to talk to the doc at the hospital to hold him until he`s more stable? Istead of going to jail-he might be able to go through mental health court. They will assign a case manager and require that he stay med-compliant. The judge may have him attend some sort of therapy or classes. He would have to check in with the judge once a month or so. If he does not show up-there will be a consequence. One of them MIGHT be jail, or detention center. However, he will be watched and the folks there know what the deal is.
Staying in a motel might be a good option for the moment. I would stay supportive as possible with him-visit him every day. Does he have a case manager?


#14

Hi Bryan, is the risperidone generic a monthly or weekly injection – seems like I read somewhere that it was weekly (?)


#15

idk about pressing charges - seems like every time we got the law involved involved with our son, it ended up worse. I agree with @bridgecomet about possibly getting him into the mental health court. Give the Invega Sustenna shot a little bit of time. We have seen a definite improvement with our son. Things are still going pretty good with him, we are on day nine since receiving his first shot - he has since had his second “booster” shot yesterday.

I do understand about needing the break from your son’s violent behaviors. We have been there. You just need a break and time to somewhat heal.

Is your son on board with the shots and wanting to do better?


#16

Thanks for all the replies. My son is back in the hospital (was out for about 2 weeks) after another aggressive incident followed by ingesting a large amount of unprescribed substances he ordered off the Internet. He is still on the monthly Invega. Of course, he wants to come home but his Drs. are worried about the hospitalizations that were so close together, and both involved being admitted to the ER and then the med ICU. Although he feels he doesn’t get “better” in the hospital, I think coming home he gets back into an unhealthy routine of ordering meds off the Internet (unbeknownst to me) and not sleeping, drinking large amounts of coffee, etc. In the hospital at least he is on a more regulated schedule of eating, sleeping, some group therapy, and taking only prescribed meds. I certainly see a change in his behaviors and moods, though he doesn’t. He has a hearing next week and I’m hoping they may keep him longer, though he’s begging me to let him come home. It’s very conflicting for a mother – I do want him home, but don’t think it’s the best for him. Thanks for listening.


#17

Certainly sounds like being at home isn’t the best place right now.

“I don’t want him home right now due to his violent behavior. He was not accepted by the group home so there is no other alternative.”

A few weeks ago you made it sound like they were trying to force you to take him home. If you had said, “No.”, would they have kept him longer (and better for him???) I’m guessing they can’t just put him out on the street. If he’s too dangerous for a group home, it sounds like he’s too dangerous for you. I can understand if he was 15, you’d have to take him home, but he’s 22. I seem to think they would have to keep him longer until he was stabilized, I don’t have personal experience; maybe someone else on the boards does.


#18

@hopeforson How did your son’s hearing go?


#19

Hi @lovemyson I was on both Invega and am now on Risperdal - They are similar drugs, but Risperdal is now of course generic (lower cost) - I find that Risperdal is a bit more effective-potent for me, it also seems to be more calming than Invega. I do realize everyone is different and reacts to meds differently, but for me Risperdal was more effective - I agree with @BryanAshley. Risperdal Consta the injected form of Risperdal is given out every 2 weeks as opposed to Invega Sustenna - once a month. I really dont know if Risperdal Consta comes in Generic, but I do know that there are Generic tablets available - I wish you and your son all the best :sunny:


#20

Thank you Wave. I have read similar approval stories of Risperdal. Depending on how benefit issues turn out with the shots, we may have to consider switching to Risperdal Consta even though it is every two weeks.

I took my son out to lunch yesterday to discuss the possibility of his injection being supplemented with a pill with the same properties. He really put his foot down on that one, saying he can’t stand taking pills. He says the pills bother his internal organs and his stomach:( Things did get a little tense as we were bantering back and forth about it, but calmed down in the end as I had to acquiesce.

So I’m very curious how his pdoc is going to increase his dosage mid-term of his 117 mg shot. His appt is at 1:30 tomorrow, so we’ll find out then what pdoc’s recommendation is.