Yes, I responded to it, for sure. I wonder how long it will be researched or deliberated before a decision is made. I really hope it changes for families of those with SMI.
I tried reading through the comments…there are about 1300 and I got so mad I had to stop reading.
People who have no loved one that suffers from an illness are commenting. Like I give rat’s behind what a insurance processor has to say regarding HIPAA. Let that insurance processor give up their life, income and time to help my loved one.
Haven’t but look like we’re going a different direction. I’m in western MA on the VT border. We got a lead on a psychiatrist in Boston so we’re headed out… he’s good and Christina was evaluated by another Dr at McLean – they work together… going back to see a specialist at McLean Tuesday… for TMS and ECT… She is on Invega – but she has a deep depression going on…Docs agree she is not psychotic and doesn’t need this monthly shot right now…She’s at 117 mg down from 156 I t hink it was… plus lithium, depakote…Too much.
So we’ll see…Glad to have great hospitals in the state but wish they weren’t so far away. So will be interesting… quite a journey. I have the name of an excellent Dr in NYC area… who put us on to the Drs at McLean and Brighams…
He specializes in anti-psychotic meds…so we’ll see how this goes… expecting we’re looking at six months of changing everything… I feel so bad for these kids.
One of our forum member has a daughter who has had excellent results with ECT.
My gf struggled with Parksonian Side Effects where her eyes would twitch and go straight up unless she was reading something until her doctor prescribed Cogentin. Not sure which meds your son is on but Cogentin apparently is the go to to off set the side effects at least for abilify. She does struggle still with appetite loss. She has insomnia sometimes so sleep and exercise are a must to stay in good health for her -her exercise program has even been beneficial for me. Hope you get some answers and your son finds some peace, apparently according to my gf most anti-psychotics have side effects that patients struggle with until another med like cogentin is prescribed.
Here’s an update…Eval at McLean’s shows deep level of depression. Also that she’s very bright. Recommendation is inpatient at McLean for ECT and to transition her off her Ivega, Depakote etc… probably keep the lithium… but they’ll figure it out. Call them on Monday for a bed. Fingers crossed… She really has not recovered from hospitalization last August… even she says it’s like she’s in a fog.
Good luck with this plan, and I hope the bed comes available quickly. As you know, she’ll be In great hands at McLean’s. ECT can work wonders for some.
Would love to hear from anyone who has any loved ones with good ECT results. When in crisis ECT worked miracles for Christina… Unreal … She does respond to it. I also know a woman my age who went from crisis treatment with inpatient ECT to maintenance ECT with amazing results. I do have a feeling it may also be where it’s done. I don’t know. We’re not there yet… she is waffling a bit… She has had serious trauma when hospitalized as she goes or is fully manic… Fortunately she doesn’t remember exactly what happens but sadly she feels the trauma. Really feel we have gone so backwards with mental health. Years ago it was the norm to hospitalize someone when transitioning medications. If they had done that five years ago I don’t think we’d be in this place. My concern is that she will back out at the last minute…
Hi @SueML , I was wondering how things have gone for your and your daughter at McLean’s?
I see you haven’t had many answers to your questions on ECT, perhaps you could post your own thread on the subject to get a bit more response.
I was on the schizophrenia sub forum on Reddit for a while and there was a woman who posted there who had very good results from ECT and kept everyone there appraised of her treatment path. I personally know nothing about it.
Wishing you and your daughter success.
She was just discharged. It could have gone better. She was there over 7 weeks. Became manic after 4 sessions… we kept telling them… did not have her on any reg meds… then tried just meds…finally court ordered to finish --did but they should have kept her longer to be sure she was stable enough on meds… as they dropped the 1 mg Ativan that helped her sleep at night… She getting maintenance ECT once a week… some staff were not kind to her… really expected more… not much empathy for her …
I’m sorry to hear that the staff in the hospital were not all kind. It was different here, the staff had kindness and respect for the patients and most of the patients cooperated at least while in the hospital. Here too they aren’t really kept in until they are stable.
Lack of sleep was a problem for my daughter too. We try a nightly walk and chamomile tea as usual remedy for sleeplessness. I sure hope things get better and that she stays on her meds.