Dr. Hive -- With these symptoms/background,....NEW Update added 1/10

[Terabith]

I have known people who had really good responses to both ect and TMS.  

[TheReader]

15 minutes ago, Pen said:

I hope the diagnosis is correct and that the treatment will be beneficial.

I am very wary of a lot of treatments for things designated psychiatric.

I do think sometimes medications can be a huge help.  I have known people for whom that’s true.

But I’ve also known people where it isn’t.

 I’m even more wary of things like electroshock treatment.  

Sending you hugs and praying for you, your family ,  and your son. 

thank you; we are hoping for a conservative approach, mostly as they are not certain the exact diagnosis or underlying condition. Thus far, the medicines do seem to be helping. His (new, but who he will start seeing once out of the hospital) psychiatrist said when we took him to her: Get him in, get him stable/functioning, get him out, and I will take over from there. If I don't like what they prescribed, I can scrap it and start over, he just has to be functional. She seems to be conservative, so we are hoping she'll be able to keep him stable once we get him home. 

[Pen]

5 minutes ago, TheReader said:

thank you; we are hoping for a conservative approach, mostly as they are not certain the exact diagnosis or underlying condition. Thus far, the medicines do seem to be helping. His (new, but who he will start seeing once out of the hospital) psychiatrist said when we took him to her: Get him in, get him stable/functioning, get him out, and I will take over from there. If I don't like what they prescribed, I can scrap it and start over, he just has to be functional. She seems to be conservative, so we are hoping she'll be able to keep him stable once we get him home. 

 

She sounds good.  That’s hopeful. 

[TheReader]

13 minutes ago, Terabith said:

I have known people who had really good responses to both ect and TMS.  

I may pm you, if you don't mind. 

[TheReader]

1 minute ago, Arctic Mama said:

Just caught up!  I’m praying it does better this evening, in patient is very rough emotionally, even if it is the safest choice 😞

yes; Sun and Mon were both a little better; thank you! 

[hippiemamato3]

I read up a bit on the condition your son is experiencing and it sounds like the recommended treatment is likely scary to you. I would like to say that I have known people for whom ECT has been life changing in a very positive way.  It isn't at all what it was in the old days....I think there are a lot of misconceptions. That being said, I am hopeful medication may be helpful for him and you won't need anything more drastic. Hang in there - it's hard being on either side of this situation!

[TheReader]

11 minutes ago, hippiemamato3 said:

I read up a bit on the condition your son is experiencing and it sounds like the recommended treatment is likely scary to you. I would like to say that I have known people for whom ECT has been life changing in a very positive way.  It isn't at all what it was in the old days....I think there are a lot of misconceptions. That being said, I am hopeful medication may be helpful for him and you won't need anything more drastic. Hang in there - it's hard being on either side of this situation!

thank you; I have a friend that had it (the treatment) (recently) and had long-term memory side effects. For 6 to 12 months (maybe more?) after, she was still finding places in her memory that were missing. So we are very nervous about it, yes. 

But again, because of the way the visits and phone calls work -- the doctor sees him in the morning only, we see him that night after the doctor has made any med changes, but we talk to the doctor before that and based on what he saw that morning -- we are hopeful when the doctor sees/saw him this morning, and we talk to him this afternoon, he'll agree that the improvement was enough to stay with meds. 

 

[Harriet Vane]

FWIW, a very dear friend of mine underwent ECT and it was lifechanging and lifesaving. The ECT procedure was not traumatic for her and not painful. She did it during an extended hospital stay (psych ward). Yes, she had memory issues in the immediate aftermath. Those cleared up completely. My friend credits the treatment with not only saving her life but also in re-setting so that, moving forward, she was able to engage in life. It has been years since she did this--she is the same person we loved before but waaaaaay more stable and way more happy. (It also helps that she is fully accepting of her mental health diagnosis and extremely proactive about proper management with meds and therapy.)

[Storygirl]

A man in our Bible study has life-long serious depression. He gets ECT sometimes and says it works wonders for him. Despite being in the same small group, I don't know him well enough to have asked him detailed questions, but I observed that he went from silently crying almost every week during the Bible study, and constantly wiping off tears, to having a positive demeanor, since his last treatment a couple of months ago. It really helps him.

[J-rap]

On 1/12/2020 at 9:55 PM, HeighHo said:

Are you working with a doctor that knows the difference between the norms for survive and for thrive?

I stumbled in to that, and my life is totally different thanks to a knowledgeable Doctor -- he solved a life long fatigue problem simply by using Japanese norms for B12 (thrive) vs US norms (survive). His partner helped me with the genetic variation portion.  

I would encourage consideration of a genetic workup; whatever your insurance will do.

Sort of off-topic, but how would one find a doctor that is knowledgeable about that kind of stuff?  

[Pen]

Whatever the potential therapies being suggested are (ECT, magnetic stimulation, or whatever), I’d recommend using google scholar, or otherwise researching what you can as to studies done that might fit your son’s situation.

 

Try to look for relevance, sample size of study, how well done the study seems to be, bias issues, (to extent you can judge). 

For example, this might or might not fit either a recommended treatment, or your son’s diagnosis, but came up as a study on the after effects of e c t therapy for depression (this turned out to be on bipolar, so might not apply at all, and maybe magnetic stimulation is the therapy you need to look at not e c t — but idea is studies with significant number of participants, rather than a few people accidentally encountered or who happen to be on a forum or Reddit or similar.  

 "Rehospitalization and suicide following electroconvulsive therapy for bipolar depression–A population-based register study": https://www.sciencedirect.com/science/article/pii/S0165032717315835

 

 

 

 

[TheReader]

9 minutes ago, Pen said:

Whatever the potential therapies being suggested are (ECT, magnetic stimulation, or whatever), I’d recommend using google scholar, or otherwise researching what you can as to studies done that might fit your son’s situation.

 

Try to look for relevance, sample size of study, how well done the study seems to be, bias issues, (to extent you can judge). 

For example, this might or might not fit either a recommended treatment, or your son’s diagnosis, but came up as a study on the after effects of e c t therapy for depression (this turned out to be on bipolar, so might not apply at all, and maybe magnetic stimulation is the therapy you need to look at not e c t — but idea is studies with significant number of participants, rather than a few people accidentally encountered or who happen to be on a forum or Reddit or similar.  

 "Rehospitalization and suicide following electroconvulsive therapy for bipolar depression–A population-based register study": https://www.sciencedirect.com/science/article/pii/S0165032717315835

 

 

 

 

thanks; I've been reading articles of that nature as well. You are very correct it is more accurate and will give us a clearer picture.  DH is not so willing to entertain the idea; depending on how DS is doing today and what the doctor says I will either push the issue or not. I am a little concerned in that the doctor who was assigned to him does not, in his normal practice, treat patients of DS's age, so may not be factoring in a still developing brain into his equations/considerations/thoughts/etc. just b/c he's not used to having to do so. 

I need to find articles on the treatment used on people of his age, as well. 

[Pen]

6 minutes ago, TheReader said:

thanks; I've been reading articles of that nature as well. You are very correct it is more accurate and will give us a clearer picture.  DH is not so willing to entertain the idea; depending on how DS is doing today and what the doctor says I will either push the issue or not. I am a little concerned in that the doctor who was assigned to him does not, in his normal practice, treat patients of DS's age, so may not be factoring in a still developing brain into his equations/considerations/thoughts/etc. just b/c he's not used to having to do so. 

I need to find articles on the treatment used on people of his age, as well. 

 

Yes. Studies where his age group is studied would be important. 

 

It might also help to go to sources that are extremely in favor and extremely against a procedure for additional information .

For extremely against, for example, Peter Breggin MD is someone I respect.

I don’t know what source to go to for extremely in favor.  

[ktgrok]

Although I'm not against ECT as an option for things, before I would do that I'd trial antiinflammatories, just because there is SO MUCH we don't know about inflammation and the brain. And it would sure be worth a few days of ibuprofen just to make sure it doesn't help some underlying cause before going for something more radical. 

I know you said the doctor checked for autoimmune disease, but there are so many, not all have tests, the ones that do don't always show positive, etc etc. Things like NMDAR encephalitis, etc are so frequently missed or misdiagnosed....I'd just need to know this wasn't something that would respond to NSAIDS or steroids before going more radical. Or at least have him checked by someone who sees and deals with things like NMDAR encephalitis, autoimmune diseases of the central nervous system, etc. If a regular neurologist rules something out but it turns out they have never diagnosed someone with that kind of thing, well...I won't trust that. BTDT with my kid.  . Only a doctor who does diagnose and treat these kinds of things can rule them out, if that makes sense. 

Again, it may not be anything like that, but given how this came on and the whole thing...I'd personally need to be sure. I had plenty of people ready to say my kid had OCD but was fine neurologically, including a neurologist, before finally having him diagnosed with PANDAS. (and celiac, it turned out, as well - why have one autoimmune disease when you have have two, lol)

Since the proper treatment he is now, for the moment anyway, OCD free. He still has some symptoms when he flares after exposure to illness, and from allergies, but has never returned to the shrieking, panicking, miserable state he was in. All from run of the mill antibiotic treatment and ibuprofen as needed. So yeah....knowing how easy it is for doctors to suggest mental health meds/treatments when the problem needs something else entirely, i'd say dmake sure. 

I did find this which mentions psychomotor retardation as part of the spectrum of catatonia and autoimmune issues. https://www.thelancet.com/pdfs/journals/lanpsy/PIIS2215-0366(19)30190-7.pdf

 

Edited January 29, 2020 by Ktgrok

[fairfarmhand]

Also, it can take weeks for many of those meds to reach full effectiveness. So keep that in mind..

[ktgrok]

53 minutes ago, fairfarmhand said:

Also, it can take weeks for many of those meds to reach full effectiveness. So keep that in mind..

True!

Things like benzodiazepines work fairly quickly, but any kind of antidepressant usually takes up to 6 weeks for full effect. In vet medicine we were taught that SSRIs and such take 4 weeks to fully change brain chemistry, but then another 2 weeks for the thinking patterns to really start to change. Sort of like how you might have an arm injury, and guard that arm for weeks because it hurts, and then it heals and doesn't hurt but you keep guarding it out of habit. So even when the brain chemistry is better, some thinking patterns are so set in that it takes a while for the brain to realize things are better and shift perspective.  (sorry....not meaning to compare your son to a dog - it's just all I know)

 

[ktgrok]

And if you want to share what the doctor tested for, regarding autoimmune stuff I'm happy to see if I see anything obvious missed. Also, did the neurologist ACTUAlLLY do a full neuro workup, having the person hold hands out straight for a period of time, walk, had hands over head, etc etc? That's the stuff that can show brain inflammation, versus just checking hand strength on each side and reflexes, which are standard tests but won't show things like Autoimmune encephalitis, pandas, etc. 

I ask because our neurologist did NOT do those things. Said it wasn't PANDAS. When I pressed him he admitted he had never seen a case of PANDAS so therefore wasn't actually qualified to say. 

A neuropsychiatrist we saw was the one that did the full neurologist exam and it absolutely showed brain inflammation!!! 

Which brings up - how about seeing a neuropsychiatrist? Not a neuropsychologist, but a neuropsychiatrist. They are harder to find, but might be who you need given that even if the diagnosis is correct, it's a hard thing to treat, and you are not comfortable with the proposed treatment anyway. 

Neuropsychiatrists deal with the neurological reasons for psychiatric conditions. 

Edited January 29, 2020 by Ktgrok

[hippiemamato3]

Now that he's been in-patient for a few days, how is he doing?

[TheReader]

On 1/29/2020 at 9:41 AM, Ktgrok said:

And if you want to share what the doctor tested for, regarding autoimmune stuff I'm happy to see if I see anything obvious missed. Also, did the neurologist ACTUAlLLY do a full neuro workup, having the person hold hands out straight for a period of time, walk, had hands over head, etc etc? That's the stuff that can show brain inflammation, versus just checking hand strength on each side and reflexes, which are standard tests but won't show things like Autoimmune encephalitis, pandas, etc. 

I ask because our neurologist did NOT do those things. Said it wasn't PANDAS. When I pressed him he admitted he had never seen a case of PANDAS so therefore wasn't actually qualified to say. 

A neuropsychiatrist we saw was the one that did the full neurologist exam and it absolutely showed brain inflammation!!! 

Which brings up - how about seeing a neuropsychiatrist? Not a neuropsychologist, but a neuropsychiatrist. They are harder to find, but might be who you need given that even if the diagnosis is correct, it's a hard thing to treat, and you are not comfortable with the proposed treatment anyway. 

Neuropsychiatrists deal with the neurological reasons for psychiatric conditions. 

Yes they did a full work-up with all that you mentioned and more. 

Yes the current psych has suggested that we get a neuropsych evalutation, but I am not clear on what exactly to ask for; the doctor hasn't gotten back to us yet so that I can ask. I have *found* a neuropsych, but they seem more geared towards educational type testing, not the sort of thing that I think DS needs (although, I could be wrong). 

23 hours ago, hippiemamato3 said:

Now that he's been in-patient for a few days, how is he doing?

This is a fairly complex question to answer, honestly. Bit by bit, he is incrementally better than he was the first night he went in, in some ways. In other ways, he is still not yet back to the level of well that he was up to the moment that we actually left him. So, amongst ourselves, we say "he's less worse..." He is finally less worse enough that we are taking his brothers in to see him when we go for tonight's visit.

He remains better with us than with them (so, we are seeing progress, and the group therapist is seeing progress, but our measures of this are very different from each other and she/they are not yet seeing the level of functioning that he exhibits in his hour with us each night). He is very tired/drowsy/groggy from all of the medicine. It takes us a fairly good deal of effort to draw him to the surface, but he does surface and we are seeing his true personality start to show through a tiny bit. 

The doctor is not calling us back to either answer our questions OR hear from us how DS is doing at night. Tomorrow will be one week. I do think that the previously mentioned procedure, which we will not consent to, is off the table (at least, the doctor has not yet called to insist on it, so....). I was given tips on how to get the doctor to call, so am stalking their phone line today to try and make that happen. 

We would covet any prayers people may have, for us, for him, for the powers that be to start seeing the functioning that we see, because then they'll let him come home, and that would mean he's actually improving not just getting less worse. 

[mmasc]

I will pray for you all.

[plansrme]

I appreciate your posting so much of your (his) story here.  Who knows how many other families you are helping by being so forthcoming?  

Have you read the book Brain on Fire?  It reminds me of your experience, not necessarily that the symptoms are the same, but my big take-away from the book is that the author would have been toast if her family had not advocated for her when she couldn't.  You're doing that for your son, and I am sure he will appreciate it when he is on the other side.

[Pen]

1 hour ago, TheReader said:

Yes they did a full work-up with all that you mentioned and more. 

Yes the current psych has suggested that we get a neuropsych evalutation, but I am not clear on what exactly to ask for; the doctor hasn't gotten back to us yet so that I can ask. I have *found* a neuropsych, but they seem more geared towards educational type testing, not the sort of thing that I think DS needs (although, I could be wrong). 

This is a fairly complex question to answer, honestly. Bit by bit, he is incrementally better than he was the first night he went in, in some ways. In other ways, he is still not yet back to the level of well that he was up to the moment that we actually left him. So, amongst ourselves, we say "he's less worse..." He is finally less worse enough that we are taking his brothers in to see him when we go for tonight's visit.

He remains better with us than with them (so, we are seeing progress, and the group therapist is seeing progress, but our measures of this are very different from each other and she/they are not yet seeing the level of functioning that he exhibits in his hour with us each night). He is very tired/drowsy/groggy from all of the medicine. It takes us a fairly good deal of effort to draw him to the surface, but he does surface and we are seeing his true personality start to show through a tiny bit. 

The doctor is not calling us back to either answer our questions OR hear from us how DS is doing at night. Tomorrow will be one week. I do think that the previously mentioned procedure, which we will not consent to, is off the table (at least, the doctor has not yet called to insist on it, so....). I was given tips on how to get the doctor to call, so am stalking their phone line today to try and make that happen. 

We would covet any prayers people may have, for us, for him, for the powers that be to start seeing the functioning that we see, because then they'll let him come home, and that would mean he's actually improving not just getting less worse. 

 

Prayers!!!  For sure!!!

 

I think maybe you need a neuropsychiatrist not neuropsychologist?   (Neuropsychiatry would be a medical , MD, subspecialty. )

Maybe a neuropsychiatrist with a holistic, functional medicine leaning.  ? 

 

To me it still keeps sounding like there’s a physical problem going on the way you describe it.  

I recommend you Listen for free to the Audible “sample” of this book as the author describes his “broken brain”

The UltraMind Solution: Fix Your Broken Brain by Healing Your Body First https://www.amazon.com/dp/B001OR747K/ref=cm_sw_r_cp_api_i_iefnEbQBPNA55

 

[TheReader]

15 minutes ago, Pen said:

 

Prayers!!!  For sure!!!

 

I think maybe you need a neuropsychiatrist not neuropsychologist?   (Neuropsychiatry would be a medical , MD, subspecialty. )

Maybe a neuropsychiatrist with a holistic, functional medicine leaning.  ? 

 

To me it still keeps sounding like there’s a physical problem going on the way you describe it.  

I recommend you Listen for free to the Audible “sample” of this book as the author describes his “broken brain”

The UltraMind Solution: Fix Your Broken Brain by Healing Your Body First https://www.amazon.com/dp/B001OR747K/ref=cm_sw_r_cp_api_i_iefnEbQBPNA55

 

Oh, hmm, re the bolded. I think I found the right one, but maybe not. I'll double check. I still can't really call them to set up an appt b/c I'm not super sure what to ask for, until/unless the doctor ever calls us back.

The therapist thinks, and I agree, and DS agrees, it's primarily social anxiety causing the disconnect/difference between how he reacts with us vs others. The doctor on the other hand seems to still be treating it like basic catatonia based in depression with possible other psychological factors (he hasn't communicated with us his diagnosis or thoughts, so I'm guessing based on the meds). He hasn't talked to us, so I don't know that he's even *aware* that DS does so differently with us, still, even now. 

The meds *are* helping DS get to a point of his original personality starting to shine through. So I don't think the doctor is *entirely* off base. But I wish he would call so I could discuss with him -- not just to ask him things, but also to be sure he's aware of what we're seeing and is taking that aspect into consideration in his treatment plan, also. 

 

[TheReader]

36 minutes ago, plansrme said:

I appreciate your posting so much of your (his) story here.  Who knows how many other families you are helping by being so forthcoming?  

Have you read the book Brain on Fire?  It reminds me of your experience, not necessarily that the symptoms are the same, but my big take-away from the book is that the author would have been toast if her family had not advocated for her when she couldn't.  You're doing that for your son, and I am sure he will appreciate it when he is on the other side.

thank you so very, very, very, very much. 

I hope so. 

I hope we make it to the other side; it still feels so helpless. 

[EKS]

19 minutes ago, TheReader said:

But I wish he would call so I could discuss with him

Maybe this has already been discussed, but has your son given written authorization for the doctor to talk to you?

[TheReader]

5 minutes ago, CuriousMomof3 said:

 

It's possible, but more likely that they need a neuropsychologist to do a neuropsych eval, which looks at IQ and all the subscores of that, various academic skills, and skills such as processing speed, attention, working memory, etc . . .  Given that all of these skills can be impacted by both mental illness and by medications that treat it, either negatively or positively, they may want this evaluation to determine which skills are now below level (e.g. processing speed and attention can both be impacted by mental illness, and improve with intervention), and need to be addressed, and to have a baseline by which to measure improvement or other changes down the road.  

@TheReader I'm glad you're seeing improvement, although I'm sure you wish it was faster.  The fact that they've found medication that he's responding to at least means that you're heading in the right direction.  

One thing I wanted to mention, and hopefully I'm just being overly anxious, is that legally he's the one who consents to treatment.  When you say that it's a good thing that they haven't called you to advocate for the treatment you don't want, I'd just want to caution you that he can consent to a treatment without them mentioning it to you.  Sometimes, people with depression, and of course other issues too, can be vulnerable to pressure to please people, and so I'd think about whether your son would be able to decline the treatment if he was asked outside of your presence (assuming that he also doesn't want it).  If not, I'd want to ask to make sure that you know if the treatment is being considered.  

I'll keep praying for him and for you.

 

I think, based on what the doctor seems to think is his condition, it would be unethical for them to gain consent for such a treatment w/o talking to us. We're pursuing, probably, a medical power of attorney just in case. I do think DS would say no to the treatment if it were asked to him w/o us there, I do think he's capable of that. And if he were presented with the info, and wanted to say yes, we'd listen. But as far as I know it's not been brought up since the first phone call, and we expressed our extreme objections to the doctor, who did say at that time he would gain consent from DS and us before proceeding. 

I do call and speak to the nurse daily, who updates us on what meds/treatments. I speak to his therapist at the facility daily to get her input and to share ours (i.e,, we compare notes on what we're seeing, because his level of function is so different w/them vs w/us still). I have left messages daily for the doctor so that we can ask these questions, but as of yet he's not returned our calls. Should I get ahold of him, I will absolutely be asking those questions and more. 

[TheReader]

7 minutes ago, EKS said:

Maybe this has already been discussed, but has your son given written authorization for the doctor to talk to you?

yes, we have a written/signed ROI for all aspects of his care. 

[hippiemamato3]

10 minutes ago, CuriousMomof3 said:

 

That is good that you got that agreement.  

I agree that it would be unethical for them to gain consent, but unfortunately, unethical behavior happens so I'm relieved that you have that safeguard in place.  

The standards of 'competency' are pretty low, and even with a form signed that they can speak to you - you don't have authority to refuse treatment. I doubt they would do ECT without a discussion though...

[TheReader]

Finally some semi-good news. 

Talked with a friend who's a nurse in a facility like this, and she gave me some good info on how to get them to document the difference in DS's behavior with us vs. with them, so that it gets back to the doctor since he's not taking our calls/returning our calls. We'll go up early tonight (and I'll probably call up and ask them about it ahead of time as well) and see about doing that (she suggested we get his particular nurse/the charge nurse/whatever nurse has a good rapport with his doctor to be present at visitation and witness his interactions with us, chart it/document it, and pass it on to the doctor next time he rounds). 

We've been trying to figure out how to get that info to the doctor since he wont' talk to us (even though we do have the ROI), and I know the PCAs who are there have sat by us and watched at times, but it never dawned on me ask for the nurse to come watch. Hopefully we can make that happen. I'm going to call and ask about it, and we'll go early tonight to try and get that done. 

My friend also did reassure me that the meds he's on at the moment, even if for the wrong thing, won't hurt him (and they are helping a little, we can see that), and that yes, switching to PHP is a good plan, and hopefully by getting the nurse to come observe, we can get that communicated to the doctor and actually get him to see the reality of things. 

[Pen]

Maybe both neuropsychologist and neuropsychiatrist could be helpful

[ktgrok]

7 hours ago, Pen said:

 

Prayers!!!  For sure!!!

 

I think maybe you need a neuropsychiatrist not neuropsychologist?   (Neuropsychiatry would be a medical , MD, subspecialty. )

Maybe a neuropsychiatrist with a holistic, functional medicine leaning.  ? 

 

To me it still keeps sounding like there’s a physical problem going on the way you describe it.  

I recommend you Listen for free to the Audible “sample” of this book as the author describes his “broken brain”

The UltraMind Solution: Fix Your Broken Brain by Healing Your Body First https://www.amazon.com/dp/B001OR747K/ref=cm_sw_r_cp_api_i_iefnEbQBPNA55

 

Yes, you need a neuropsychiatrist not neuropsychologist. And you just want a full evaluation.

[TheReader]

Y'all!!!! According to the patient care tech person on his floor, who has been on his floor all week, he did "really well!" today!!! This is the first person I've talked to who has sounded *positive* (legitimately positive, not putting on "for the family" optimism) about him. Said that he ate really well, went to all his groups, and watched movies with the other patients. And the way she said it sounded like "watched movies" as in, she could tell he was actively watching the  movies and not just sitting in the same room, if that makes sense. Which is HUGE because as recent as....yesterday?....the most improvement we were told of was things like "Oh, he thanked me after group today..." 

So *maybe* just maybe he's starting to relax/improve in his functioning even with them, which is awesome!

[ktgrok]

So glad!

[ktgrok]

Also, not to beat a dead horse, but some things like autoimmune encephalitis can require a spinal tap to diagnose. There are cases with normal bloodwork but antibodies in the spinal fluid. 

[Pen]

26 minutes ago, TheReader said:

Y'all!!!! According to the patient care tech person on his floor, who has been on his floor all week, he did "really well!" today!!! This is the first person I've talked to who has sounded *positive* (legitimately positive, not putting on "for the family" optimism) about him. Said that he ate really well, went to all his groups, and watched movies with the other patients. And the way she said it sounded like "watched movies" as in, she could tell he was actively watching the  movies and not just sitting in the same room, if that makes sense. Which is HUGE because as recent as....yesterday?....the most improvement we were told of was things like "Oh, he thanked me after group today..." 

So *maybe* just maybe he's starting to relax/improve in his functioning even with them, which is awesome!

 

I hope he will continue to improve and can go home soon!!!

[catz]

What a great update and I hope this is the start of his turnaround!  Sending hugs!

[TheReader]

(probably final) UPDATE -- he is HOME. 

The med combo that the doctor has him on seems to be phenomenal. Last night was an hour of the best we've seen him in a very, very, very long time. Pre-hospitalization good. Pre-illness good. Pre-leaving and going to college the *first* time good. 

Now, in the interest of all honesty, this was a one-hour glimpse. But it is the best one hour we've had in a very long time. My DH said "it's like he's 90% back to his real, old self" -- his pre-depression in the first place, pre-the pneumonia time period that first started us wondering what was going on. Which was Jan 2017. 

Now, more full disclosure. He's still slowed down some of the time. He's still unsure some of the time. (I mean, we've only *just* got him home, shared one meal, and took naps, so....I'm still waiting to see). He'll be doing some intensive outpatient stuff for a while. I'm sure there will maybe be med tweaks. We still don't have a definitive diagnosis, but did find a neuropsych to do the kind of testing they want, assuming I can get an appointment (but I found a location/facility, at one of the big hospitals here) (I am once again very grateful we live in a mecca of medical everything). 
 

But. He is HOME. He is very improved, some of the time. As the meds keep working, and the therapy keeps working, it is our hope and prayer that the glimpses become the always. But even at glimpses.....this is huge. 

So, I'll probably stop updating and let the thread die. I'm ok answering PMs if you guys want more info. Or feel free to PM me if you think of stuff we need to know. After a reasonable time, I'll likely come back and delete as I can just because....there's a lot of info here. But I wanted to let you all know the latest, and thank you, because I couldn't have really processed all of this w/o y'all. 

[mmasc]

Wonderful update! I’m so glad to hear he’s home and improving. You did (Are doing!) an awesome job advocating for him and helping him through this. 

[Terabith]

Oh, this is wonderful news!!!  I'm so happy for all of you!!!

[catz]

Great update - I hope the outpatient and continued follow up gets him back up to 100% and back to his real life.  Wonderful - very glad for your family!  ❤️   

[matrips]

I am really glad to see he’s home. 💕.  And I hope he continues improving.  What a difference that week or so much in patient made!  You made a difficult decision, and it turned out well.  🤗