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

[TheReader]

I'm going to be as brief as possible and maybe a little vague; if you need more info, ask, I'll answer, just in the interest of brevity and not over-explaining....going to try to stick to "just the facts" as well as I can. 

Background:

depression/anxiety; therapy for a year-ish, then also meds for a year-ish/18 months-ish (I'm really fuzzy on the dates/lengths of time on this, at this point)

took himself off meds over the summer (June/July, probably??)

from the onset of the depression, through the time on meds, and now again the biggest/most noticeable symptom has been "zoning out" -- to the extent of "hey, are you there??" even in face-to-face interactions. The psych described it as mild catatonia (the therapist didn't think it really warranted that description). It seemed to be a little bit situational. Meds only seemed to sometimes help, sometimes not. 

Now that he's off meds (and been off for 4 or 5 months), it does seem possibly worse, but possibly also situational again, and it still (always has) waxes & wanes, comes & goes, even within a single afternoon visit. 

So, symptoms: 

"zoning out" as described above

seemingly forgetting conversations that took place (ex: we spent 30 mins probably chatting about having seen Cats, telling him about it, sharing our favorite songs, etc.; at the end of the visit, about maybe an hour or two later, he reaches for something to say and comes up with "So, what did y'all think of Cats?" -- as though we hadn't gushed and gabbed about it for ages when we first picked him up; OR as though he wanted to say *something* to extend the visit, couldn't think of anything, and Cats was the only thing he could come up with)

evidence of nose bleeds (could be from the cold, dry air where he is)

discoloration on his teeth (in the space between the teeth/along the gums; orange-ish colored)

losing weight (and, he's thin....he has no weight to lose)

"freezing up" -- ex, like the zoning out, but also for ex, while eating he'll sit and just hold his food/fork and often needs prompting to keep eating (could be due to social anxiety??) (but this is when it's just our family, or with others as well, at home, at restaurants, etc)

repetitive speech -- when you talk to him, he'll often repeat the start of his sentence(s) 3 or 4 times before continuing (ex: "So I went.." "So I went to the.." "So I went to the advisors yesterday" "Yea, so, I went to the advisors yesterday and they said...." etc....) Sometimes seems like he's "thinking out loud" what to say and may or may not realize he's verbalizing it the first few times (usually the first few times are quieter, and then a more normal speaking voice once he actually kicks in and says the thing....)

Not sure about sleep habits, etc; he's away at college. We see him....sometimes. I don't know if he's like this with his friends as well, or just with us, or what. 

I'm calling his therapist this morning, to see if I can discuss this with her and get her input. But.....what could this be??  Do we need to try and get an appt with our regular doctor for a physical? Is this just a recurrence/worsening of his depression? Drug use? (I really don't think so, but.....???) Eating disorder?? Brain tumor? Sleep deprivation? 

If this were your child, where would you start in checking into this?? He's 22, so an adult, so the other concern is.....if he doesn't feel there's anything wrong, he may or may not agree to be seen. He stopped his meds over the summer on his own (he did seem a little more "himself" during that time; he was *very* busy, getting exercise, fresh air, eating well, etc while working at a summer camp), so I worry he will be resistant to any intervention.  But this seems worrisome enough we should push it, right?? 

So, therapist? Psychiatrist? Regular doctor? Where would you start?

UPDATE 12/17: We're seeing the doctor today; please pray for wisdom, answers, that the doctor will know what to even investigate to get to the bottom of this, etc. He's been home a few days and no real improvement.  Well, the tooth discoloration seems to have gone, maybe he was just snacking on something orange that day before he saw us, and the nose bleeds have stopped/were likely from the cold, dry weather at the time. But the zoning out, freezing up, not really being present/aware.....just as bad as ever, and he doesn't seem to realize that. Which honestly scares me more than the symptoms themselves. 

I'll update again when we're home, the appointment is this afternoon. He's allowing me to go in with him, which is good, as I don't think he is aware enough of the symptoms to be able to describe them. (seriously). I'll of course step out once everything has been explained and she needs to examine him, but I will ask her to explain everything to me as well as him, because again, he's just not aware. He's said this is fine. Please pray she has an idea what to test, where to go from here, what's going on, etc. and that we get answers. 

(copying/pasting this update in a reply as well so people will see it)

UPDATE added at the end, 1/10; basic summary -- blood work was normal, neurologist says not neurological, next appt is in Feb with psychiatry. 

 

 

Edited January 11, 2020 by TheReader
add an update

[EKS]

I'd start with a regular doctor, and I'd talk with the doctor beforehand (the doctor can't talk to you about his condition, but they can listen).  

Edited November 19, 2019 by EKS

[TheReader]

11 minutes ago, EKS said:

I'd start with a regular doctor, and I'd talk with the doctor beforehand (the doctor can't talk to you about his condition, but they can listen).  

thank you; yea, it sometimes stinks, having adult kids. He did sign the form for the therapist to talk to us, so I'm hopeful she'll see me/talk with me on the phone and at least hear me out and then suggest "make him an appointment with (her, the psychiatrist, or the medical doctor, whatever she feels best fits....)"  I *think* she can say that much to us....I hope. 

[J-rap]

I'd start with a regular doctor, but I'd definitely want to see a neurologist too.  I think a brain MRI would be very fitting.  Bigger, more obvious things I'd want to rule out would be mini-strokes and epilepsy.  (I don't think it's either of those, but I'd want to rule them out.)  I think a full panel of blood work is very important.  That could pick up a lot of physical stuff that might be going on.  (There could be some food/nutrient-absorption problem or a thyroid problem, for example.)

I'd focus on looking for a physical problem first, before thinking it's psychological.  

 

[itsheresomewhere]

Regular doctor and get a neurologist set up.  Some of it reminds me of absence seizures.  And I would highly recommend the genetic testing for meds for depression and anxiety before going back on meds. 

[TheReader]

19 minutes ago, J-rap said:

I'd start with a regular doctor, but I'd definitely want to see a neurologist too.  I think a brain MRI would be very fitting.  Bigger, more obvious things I'd want to rule out would be mini-strokes and epilepsy.  (I don't think it's either of those, but I'd want to rule them out.)  I think a full panel of blood work is very important.  That could pick up a lot of physical stuff that might be going on.  (There could be some food/nutrient-absorption problem or a thyroid problem, for example.)

I'd focus on looking for a physical problem first, before thinking it's psychological.  

 

So even with the history (and we do have family history, too) of mental health problems/psychological, you'd still go medical/physical first? (that would explain why the meds previously worked, or not, with no rhyme or reason....) 

 

10 minutes ago, itsheresomewhere said:

Regular doctor and get a neurologist set up.  Some of it reminds me of absence seizures.  And I would highly recommend the genetic testing for meds for depression and anxiety before going back on meds. 

Who would we ask about genetic testing for meds?? We definitely were not thrilled with the meds previously, and are very hesitant about resuming if suggested, but...how can we find out about that? Our regular doctor? 

[itsheresomewhere]

You can ask your regular doctor or the psychiatrist/psychologist can order it.  There are a few places who do this testing.  This has turned the corner for my niece with treating her depression and anxiety.  Not all know this exists but they should.  

[Pen]

Medical / physical first.

tumor, stroke, inflammation, Parkinson’s, nutrient deficiency (or suboptimal for him). 

Is he self medicating with anything? It could be some drug use, though nothing specific to fit that comes to mind. 

the orange of teeth is odd - does he know what it is?  It’s such an odd symptom, it might be one that could help lead to what a problem is.

Vaping? Could fit some symptoms and weight loss. 

There could also be more than one thing. Deficiencies leading to feeling bad to self medicating with something to more feeling bad... 

[Selkie]

Hugs, Reader. This must be so worrisome for you.

Maybe rule out drug use first, if possible? A lot of what you're describing could be signs of that.

I hope you get some answers soon.

[Pen]

Celiac?

[Pen]

Lyme disease or something like that? 

[TheReader]

4 minutes ago, Pen said:

Medical / physical first.

tumor, stroke, inflammation, Parkinson’s, nutrient deficiency (or suboptimal for him). 

Is he self medicating with anything? It could be some drug use, though nothing specific to fit that comes to mind. 

the orange of teeth is odd - does he know what it is?  It’s such an odd symptom, it might be one that could help lead to what a problem is.

Vaping? Could fit some symptoms and weight loss. 

There could also be more than one thing. Deficiencies leading to feeling bad to self medicating with something to more feeling bad... 

No idea;  we've not yet talked to him about all of this. We just saw him this weekend, and noticed some of this for the first time (the orange teeth, the dried blood in his nose; that part could be weather related).  I did look it up when we got home, and it's a sign of bacteria/food build up on the teeth, due to poor brushing. So....assuming there's depression going on, poor eating, poor hygiene would/could all be part of that. Or something else that presents like depression.

Parkinson's in a 22 yr old??? I hadn't thought about that. 

I really don't think vaping or drugs, but I'm also not flat refusing to consider that. 

 

Just now, Selkie said:

Hugs, Reader. This must be so worrisome for you.

Maybe rule out drug use first, if possible? A lot of what you're describing could be signs of that.

I hope you get some answers soon.

 

My mind goes to drugs.....but it's so out of character for him. He's a kid who hates even taking a tylenol. Won't (or heavily resists) taking a Monster drink when he's driving back to school late at night, even to sip on for the drive. Rarely drinks caffeine. I know this could all/mostly be evidence of that......but it seems the least likely. Unless that's just me being in denial. 

 

[TheReader]

4 minutes ago, Pen said:

Celiac?

I don't think so; can it just pop up suddenly like that? Or go undiagnosed for so long? I have never noticed any kind of correlation to wheat and symptoms, but.....

Just now, Pen said:

Lyme disease or something like that? 

He did work at a summer camp all summer; I hadn't even considered tick  borne diseases as an option. I'll look into that. Thank you. 

[TheReader]

I have to step out for a while, but I'll come back and read any more comments later today and answer any more questions if there are any. Thanks, all; I appreciate all the input. 

[klmama]

I strongly suspect his sleep patterns are a wreck; lack of sleep could explain much of what you listed.

 

 

 

 

 

[gardenmom5]

zoning out is also typical of some asd.   dudeling does it.

orange gums - I'd have him checked for nutritional deficiencies.   I would prefer to have an ND check those, and I'd get my child into one.  

[Pen]

1 hour ago, TheReader said:

I don't think so; can it just pop up suddenly like that? Or go undiagnosed for so long? I have never noticed any kind of correlation to wheat and symptoms, but.....

 

It definitely can go undiagnosed for a long time.  Especially if it doesn’t have the classic GI presence.  Gluten / wheat are ubiquitous in western eating and it takes a long time to fully clear the system.  So symptoms won’t necessarily be clear cut like: He eats bread, and an hour later seems depressed or spacey or whatever.  They could be much more general.  Other than testing it could take a 30 day elimination to see if he’d be better without it. 

As an autoimmune condition it can possibly also start part way through life ...  

Possibly the William Walsh (on Brain and Biochemistry healing) book I linked on Learning Challenges area would help. 

and/or Mark Hyman’s Ultramind

and/or Datis (can’t recall last name) book on brain and nutrition would be helpful

unless an illness is responsible for weight loss or unless he was overweight and needing to lose weight, it sounds like his nutrition is off...      well, it’s probably off even if there were a tumor or other illness  or nicotine as the cause of weight loss...

[Pen]

Toxins or allergens in his environment? Mold? Formaldehyde? VOCs? 

[J-rap]

2 hours ago, TheReader said:

So even with the history (and we do have family history, too) of mental health problems/psychological, you'd still go medical/physical first? (that would explain why the meds previously worked, or not, with no rhyme or reason....) 

 

Who would we ask about genetic testing for meds?? We definitely were not thrilled with the meds previously, and are very hesitant about resuming if suggested, but...how can we find out about that? Our regular doctor? 

I would!  You'd hate to be missing something that could be very treatable.   And physical stuff is often much more easily treatable than psychological stuff.  Or, it could be that something physical is going on that is aggravating the psychological stuff.

[ktgrok]

I'd want at minimum labs for anemia including B12, D, and thyroid  - particularly thyroid. Personally I'd also ALWAYS add on a celiac panel for any new psychiatric symptoms as in a not small percentage of celiac patients the first symptoms are psychiatric, not gastrointestinal and in some those are the only symptoms. Malnourishment from damaged intestines due to celiac would also explain weight loss. A1C and glucose would also be a good idea as diabetes can cause weight loss and brain fog and mood changes. 

I'd also want a consult with a neurologist to rule out absence seizures. 

I know all that sounds crazy, but my kid was just having melt downs and had some circles under his eyes that I'd attributed to some seasonal allergies. Turned out to be celiac - we never would have known if I hadn't pressed for that lab work. 

[ktgrok]

2 hours ago, TheReader said:

So even with the history (and we do have family history, too) of mental health problems/psychological, you'd still go medical/physical first? (that would explain why the meds previously worked, or not, with no rhyme or reason....) 

 

 

ALWAYS ALWAYS ALWAYS go medical first! 

When I did dog training and worked with behavior issues it was considered best practices to always have the dog get a full physical with lab work first. Too many physical problems can be expressed via behavior. And it makes no sense to bang your head against a wall with therapist visits and such when the problem is actually something physical. 

Sorry, didn't mean to yell, but in traveling this path with both my husband and my son, it drives me NUTS that doctors/society jump to therapy and anti-depressants rather than ruling out physical causes first. My husband's depression ended up being due to a massive vitamin D deficiency - like nearly rickets levels. He had classic symptoms and was at risk due to a desk job where he never gets outside, but I'm the one that pressed for testing. Then with my son I went in ready to push for medical, and thankfully pediatrician agreed and after many appointments, lab draws, and specialists we now know he has Celiac and PANDAS.  But first everyone wanted to jump to ASD. Um, you don't get that at age 6 as a general rule, all of a sudden. So maybe there is an underlying issue there, but that isn't why I'm here. This is new. Oh, and ibuprofen doesn't fix ASD!

 

[catz]

I'd most certainly follow up medically with blood tests for nutritional deficiencies, thyroid, etc.  Honestly, I might push for drug testing too, maybe he is self medicating. 

That said sleep deprivation, poor diet, anxiety/depression really could account for quite a bit of that.  I have a young adult son that is just prone to winter nose bleeds.  

I think it's possible to follow both roads.  Maybe I'd do basic physical blood work first and then continue follow up with psych, doing further medical follow up if recommended.  The other thing I was going to say is it can be BOTH and unfortunately I know from experience.  Auto immune responses and mental health can be tightly coupled.  It doesn't necessarily mean one or the other.  He really may need help both medically and psychologically.  

[Chris in VA]

Orange gums--could there be liver involvement? 

[mmasc]

The teeth and weight loss, along with being distracted makes me think of possible drug (meth) use, but I’d definitely want to do as other posters have suggested and get labs/check up with a doctor. I’m sorry you’re dealing with this and hope he is better soon. 

[TheReader]

4 hours ago, gardenmom5 said:

zoning out is also typical of some asd.   dudeling does it.

orange gums - I'd have him checked for nutritional deficiencies.   I would prefer to have an ND check those, and I'd get my child into one.  

 

2 hours ago, Chris in VA said:

Orange gums--could there be liver involvement? 

Not orange gums per se, more like build up/staining on the teeth along the gumline and between where the teeth touch.....like he's not been flossing/brushing well, but the build up is orange for whatever reason. 

I did look that part up and found info that a certain bacteria in the mouth will cause orange tooth staining, usually from poor hygiene. And, could also be partially just him overdue for a dental visit (although, orange, so......weird.)

But not orange gums, just on the teeth, near the gums. 

[TheReader]

2 hours ago, mmasc said:

The teeth and weight loss, along with being distracted makes me think of possible drug (meth) use, but I’d definitely want to do as other posters have suggested and get labs/check up with a doctor. I’m sorry you’re dealing with this and hope he is better soon. 

 

2 hours ago, happysmileylady said:

Young person, away at college, previously on depression/anxiety medications...I would be really concerned about drugs and given that he took himself off meds, he could now be self medicating.  And he could be self medicating with drugs that could be tainted.  

 

 

2 hours ago, FuzzyCatz said:

I'd most certainly follow up medically with blood tests for nutritional deficiencies, thyroid, etc.  Honestly, I might push for drug testing too, maybe he is self medicating. 

That said sleep deprivation, poor diet, anxiety/depression really could account for quite a bit of that.  I have a young adult son that is just prone to winter nose bleeds.  

I think it's possible to follow both roads.  Maybe I'd do basic physical blood work first and then continue follow up with psych, doing further medical follow up if recommended.  The other thing I was going to say is it can be BOTH and unfortunately I know from experience.  Auto immune responses and mental health can be tightly coupled.  It doesn't necessarily mean one or the other.  He really may need help both medically and psychologically.  

 

We're really not ignoring that this may be a possibility.....truly. We'll check it out; all of our pharmacies sell home testing kits, if we need to, and at least on e of the various labs around us does the testing as well. But it's truly so far outside this kids personality......I just don't see him going that route. I mean, he may. I guess no parent ever says "oh, yea, I could see my kid turning to drugs....." but......he doesn't even like to take tylenol, strongly limits his caffeine intake, doesn't drink.....the tooth discoloration isn't what "meth mouth" looks like (I did definitely look up pics of that, though, because......maybe??), and it's not really like nicotine stains, either (mainly it's all in the wrong place) and......I mean, it *could* be this. But I really don't think so.

He's the kid who has obedience hardwired into every fiber of his being. He was the kid on the playground telling me all the rules all the other kids were breaking. He still today texts me "ugh, you're going to hate me, but...." when he even remotely thinks he did something wrong (he has a ridiculously insane guilt complex); he texted me yesterday "I have really sucky news, you're going to hate me, but I didn't make it by the advisor's office because I was focusing on getting homework done."  I mean....he just I don't think is even remotely capable of such a huge violation of what have been his principles all his life. Plus we'd see the spending, and the kid never spends money. (I checked his bank account yesterday b/c we were literally afraid he's not eating; he is buying groceries regularly, though, so I think he's getting food, just maybe not great food). 

Anyway....I'm not saying it's definitely not, because....who the heck really knows. But pretty much I think drug use would be unlikely. 

[TheReader]

4 hours ago, Pen said:

Toxins or allergens in his environment? Mold? Formaldehyde? VOCs? 

This I hadn't considered; he's in an apartment this year, off campus, so different living space. I haven't seen similar symptoms in his roommate (and the roommate has come with us for meals when we go up, so honestly we see as much of him as our son), but there could perhaps be something in my son's space that isn't in the roommate's (they have individual bedrooms and bathrooms). 

Hmmm. I'll look into this/mention it to the doctor when we get him in. 

[Terabith]

This sounds physical, not psychological.  There might ALSO be psychological, but this really, really, really sounds physical.  I'd want a full physical, with blood work.  I'd want a neurological exam for sure, almost certainly with imaging and an EEG.  The zoning out sounds very much like absence seizures, and if he's doing it while brushing his teeth, his dental hygiene may have deteriorated without his realizing it.  If he's needing to be prompted to eat, I would imagine he needs prompting while brushing, too.  

I don't think this sounds like drug use.  I REALLY would push for a neurologist.  

ETA:  And sooner rather than later.  Like, emergency appointment.  I'd be very alarmed.  

Edited November 19, 2019 by Terabith

[TheReader]

2 hours ago, FuzzyCatz said:

I'd most certainly follow up medically with blood tests for nutritional deficiencies, thyroid, etc.  Honestly, I might push for drug testing too, maybe he is self medicating. 

That said sleep deprivation, poor diet, anxiety/depression really could account for quite a bit of that.  I have a young adult son that is just prone to winter nose bleeds.  

I think it's possible to follow both roads.  Maybe I'd do basic physical blood work first and then continue follow up with psych, doing further medical follow up if recommended.  The other thing I was going to say is it can be BOTH and unfortunately I know from experience.  Auto immune responses and mental health can be tightly coupled.  It doesn't necessarily mean one or the other.  He really may need help both medically and psychologically.  

Yea, the winter nose bleed part isn't alarming on its own, at all. He's had them before. And he's had nighttime nose bleeds before over the years. So, not insanely unusual for him, and maybe just its own thing and separate from everything else. BUT when we do get him seen, assuming the doctors will let me talk first, I will be mentioning all of the things and letting them sort it out. 

What I think we'll probably do is schedule him for a regular physical, and perhaps when I make the appointment I can put in a note for the doctor to call me so I can explain all that's going on, so they know to be thorough/what to check for. Then we'll also call his recent therapist (we did not like the psychiatrist, but the therapist has all the history of the meds and all too) and fill her in on how he's doing (she invited me to do so once he returned to school), and ask her opinion on if she feels he needs to be seen, and hopefully get him in with her and go from there. 

And probably a dentist appt if we can squeeze one in. 

For sure his sleep is all messed up and judging from the fact he's not eating at the on campus places much, and doesn't cook much, he's likely not getting nutritious food even if he is "eating." And if he's losing as much weight as I think (which he really can't afford to do), he's probably not eating much either, so I'm sure his nutrition has taken a dive. 

Now....could vitamin deficiencies and such crop up this quickly?? Because for sure over the summer he was eating well/healthily. He worked at a summer camp, was getting tons of exercise, eating well, etc. (I mean, it was all very controlled) and was doing great. Could Sep to Nov be enough of a drop in nutrition to cause symptoms like this, this fast??? It seems like one semester of eating "like a college student' (his favorites are Panda Express and a burger/chicken sandwich joint, and I have no idea what he's buying at the grocery store....) wouldn't be enough of a drop in nutrition to cause what seem to me like fairly severe symptoms.....would it???

3 hours ago, Ktgrok said:

ALWAYS ALWAYS ALWAYS go medical first! 

When I did dog training and worked with behavior issues it was considered best practices to always have the dog get a full physical with lab work first. Too many physical problems can be expressed via behavior. And it makes no sense to bang your head against a wall with therapist visits and such when the problem is actually something physical. 

Sorry, didn't mean to yell, but in traveling this path with both my husband and my son, it drives me NUTS that doctors/society jump to therapy and anti-depressants rather than ruling out physical causes first. My husband's depression ended up being due to a massive vitamin D deficiency - like nearly rickets levels. He had classic symptoms and was at risk due to a desk job where he never gets outside, but I'm the one that pressed for testing. Then with my son I went in ready to push for medical, and thankfully pediatrician agreed and after many appointments, lab draws, and specialists we now know he has Celiac and PANDAS.  But first everyone wanted to jump to ASD. Um, you don't get that at age 6 as a general rule, all of a sudden. So maybe there is an underlying issue there, but that isn't why I'm here. This is new. Oh, and ibuprofen doesn't fix ASD!

 

No, I appreciate it. When he was first dx'ed with depression, we had spent a lot of time checking other stuff. He did have pneumonia during that time, but not pneumonia then suddenly depressed. But he was sleeping all the time, and then he complained of his back hurting, and when we took him in for that, turns out, it was pneumonia. But he'd been withdrawn and sleeping a lot for a lot longer than just "oh, huh, he has pneumonia" But the blood work that was done then, although I guess just basic maybe, didn't indicate anything else going on. And we talked to his doctor about everything after he recovered from the pneumonia, and I think (I"m pretty sure??) she did more blood work, and then he started having (passive, but there) suicidal thoughts, and so....therapist. And then after at least a year with her, maybe more, and he was getting more and more "zoned out" all the time (she gave him some screening, a Q & A test, and most people take about 30 mins for it.....he took over 2 hrs, she sent him home with it, and a few weeks later he finally took it back to her......)...anyway, around then she sent us to a psychiatrist to consider meds. 

So, definitely we are considering all routes, for sure, because really, it's not like when he was on the meds, he was completely better, and he's now off them (on his own) and he's worse.....he wasn't ever totally better really and the doctor he had just kept tweaking and adding things, and they did get him....I guess more functional? But then....not really. The best he was doing, when we saw him, was over the summer once we got him home from camp (I think from all the exercise and sunshine).

But I think this time, we jumped to at least checking with the therapist, because she best knows his history and can point us in the right direction. Anyway, thank you. I don't at all mind you jumping in and "yelling at me" 🙂 It's appreciated. Truly. And I had no idea about celiac and psychological symptoms.....I'll read up on that. 

[TheReader]

15 minutes ago, happysmileylady said:

Drug dealers don't take debit cards (well, generally speaking, I suppose in today's world, they might take like Venmo or something lol.)  It's entirely possible that he's pulling cash out when he goes to the grocery store and using that to buy drugs.  In fact, because he knows that you can check his bank account, that's really the most likely way for him to be taking the cash out, because there's no way you would know.  

 

LOL! Well, true. I guess I was thinking I'd see ATM w/drawals. Ha. I don't think his grocery amount is high enough to be buying food *and* getting cash back but.....who the heck knows. 

I don't know though....I mean....I'm not 100% confident it's not drugs, obviously, because the thought crossed my mind, too. But I'd be seriously shocked if it ended up being that. 

Now.....LEGAL substances he might be using???? Maybe I'll start a spin off thread on that, because seriously, there is basically no way this kid is doing something illegal (y'all will just really truly have to believe me) BUT if there's some legal, "healthy" something out there......vitamins? "all natural" energy drinks?? I don't even know what it might would be....??? Something like that could be a possibility. 

[TheReader]

5 minutes ago, Terabith said:

This sounds physical, not psychological.  There might ALSO be psychological, but this really, really, really sounds physical.  I'd want a full physical, with blood work.  I'd want a neurological exam for sure, almost certainly with imaging and an EEG.  The zoning out sounds very much like absence seizures, and if he's doing it while brushing his teeth, his dental hygiene may have deteriorated without his realizing it.  If he's needing to be prompted to eat, I would imagine he needs prompting while brushing, too.  

I don't think this sounds like drug use.  I REALLY would push for a neurologist.  

Well that's a good point; I hadn't thought of that. 

And I do wonder....when we aren't there, and he's eating alone in his apartment, or alone at Panda Express or wherever......does it happen then, too, or is it just a social anxiety thing and only when there are people? So if it's happening then, too, does he just eventually throw away his food because he's sat there so long it gets cold? Or does he eat more quickly so this doesn't happen? Or......??? I mean, that would account for the weight loss, if he's freezing up while eating even when he eats alone.....because then no one's there to say "hey, eat, take a bite" and then.....does he??? 

I really wish he'd agree to come home and get *well* before returning to school. I cannot put into words, at all, how much I hate that he's so far from home. 

[Terabith]

I would bet small sums of money that the weight loss is due to him not eating because people aren't prompting him to.  I don't think he's freezing because he's having social anxiety.  That would be a really unusual presentation of social anxiety.  I really think this is a physical thing and he's freezing for some reason.  Maybe seizures.  Maybe catatonia.  But I'm guessing it's neurological, not psychiatric.  I suspect eventually enough time has passed that he just....stops eating.  Food is cold, or he's lost the mood, or something.  But I don't think he's getting the nutrition and I dont' think he's taking care of his teeth.  I also don't think he's using illegal drugs or vaping.  

Celiac is a real possibility.  But I'd want a neurologist to do a real exam first.  If these are happening enough that both the therapist and psychiatrist saw them, that sounds like they're happening a LOT.  And if he's having seizures, he's probably having them at night, too, which would mess up his sleep, for sure.  

[Pen]

If he has a roommate, maybe the roommate has an idea about eating and so on.

I think it’s possible to get into nutrition trouble very quickly. 

I may or may not succeed but am trying to link a mild scurvy teeth/gums image:

 

Nope. Can’t link it.  But you can google.  Sometimes it can look like orange ish discoloring , or brown or yellow...    

 

 

[TheReader]

1 minute ago, happysmileylady said:

Is pot legal in the state he is in?  

The reasons I ask are 

-sometimes because it's legal, the whole buying from a guy at school thing gets a little blurry.  

-if that's the case, and he's not buying from a legal shop (or even if he's buying from a sketchy but legal place) then it's possible he's getting more than just pot.

 

Also, if he's vaping and sharing vape products with friends, it's possible that he's getting THC products with our without knowing it.

 

And, it's possible that he's getting something "all natural" and "legal" from his friends to "help" like some kind of "vitamin" or something.....and not even know he's getting something dangerous or illegal.  

Pot is not legal in our state/his state. 

It is certainly possible he's getting what he thinks is a legal substance, that is laced with a not legal substance. Or that the legal substance is sketchy. It is something I will ask his therapist when I talk to her; the current plan is: call the therapist, set an appt for me to explain ALL of this to her, see what she says. He signed the release so she can talk to me, so I think she will. She has in the past. 

Also, call our doctor; explain as much as possible either over the phone or set up a consultation appt so I can explain this to her and ask her to schedule him for whatever she feels is needed (blood draws, MRIs, EEGs, whatever). I don't *think* we have a current release form there, but I think I can explain to her what's going on, she can listen w/o commenting, and then she can know what kind of appt to make for him to come to and then all they have to tell me is when the appt is so he can show up. 

Look up the neurologist we used for our middle son and see if he sees grown-ups too or just kids, and find a neurologist who will see grown-ups if he won't, and see about getting seizures ruled out if the doctor can't do that there. 

I think that covers all the bases....right? (anyone can chime in on that.....)

[TheReader]

8 minutes ago, Terabith said:

I would bet small sums of money that the weight loss is due to him not eating because people aren't prompting him to.  I don't think he's freezing because he's having social anxiety.  That would be a really unusual presentation of social anxiety.  I really think this is a physical thing and he's freezing for some reason.  Maybe seizures.  Maybe catatonia.  But I'm guessing it's neurological, not psychiatric.  I suspect eventually enough time has passed that he just....stops eating.  Food is cold, or he's lost the mood, or something.  But I don't think he's getting the nutrition and I dont' think he's taking care of his teeth.  I also don't think he's using illegal drugs or vaping.  

Celiac is a real possibility.  But I'd want a neurologist to do a real exam first.  If these are happening enough that both the therapist and psychiatrist saw them, that sounds like they're happening a LOT.  And if he's having seizures, he's probably having them at night, too, which would mess up his sleep, for sure.  

Thanks; I laid out above but I think the plan is: consult with the therapist; get her take on this. Consult with our doctor, explain what's going on with him, and have her make an appt for whatever all testing she thinks he needs based on what I describe to her (b/c he won't be thorough/can't be relied on to convey all of this). Find a neurologist to rule out seizures. I think that covers all the bases....?? 

And thank you. I do think sleep deprivation + not really eating could account for most of this. And I think you're probably right, if he's freezing up while eating....probably it's always, and probably he then doesn't finish the meal. 

Just now, Pen said:

If he has a roommate, maybe the roommate has an idea about eating and so on.

I think it’s possible to get into nutrition trouble very quickly. 

I may or may not succeed but am trying to link a mild scurvy teeth/gums image:

 

Nope. Can’t link it.  But you can google.  Sometimes it can look like orange ish discoloring , or brown or yellow...    

 

 

I will google that; thank you. 

I'll have dh text the roommate, maybe. 

[Pen]

Nosebleeds could be dry air, but also has a low vitamin C correlation. 

Some other vitamins also relate to bleeding and clotting.  K, for example. 

It may be only one thing happening , but he’s likely deficient or suboptimal in a number of vitamins and minerals... 

 

[TheReader]

8 minutes ago, Pen said:

Nosebleeds could be dry air, but also has a low vitamin C correlation. 

Some other vitamins also relate to bleeding and clotting.  K, for example. 

It may be only one thing happening , but he’s likely deficient or suboptimal in a number of vitamins and minerals... 

 

that's also true; thanks. 

googled the teeth; I think from various googling, it's just bad tartar build up honestly. That's the closest image I can find, anyway. Slightly more orangey- than yellow, but that's the pattern/placement of the build up and more what it looked like. So, poor hygiene, plus overdue for the dentist anyway because school/being away from home, plus probably eating more starchy foods/sugary foods leading to faster/more tartar created in the first place.......that sums up that, probably. 

We'll get him into the dentist as soon as he's home long enough, but at least that relaxes me about that part of things. 

I appreciate you chiming in and being patient with me; thanks. 

ETA: The teeth at the pic in this link are pretty much what his look like. https://wmsmile.com/what-is-tartar/

Edited November 19, 2019 by TheReader

[Pen]

Btw, Did you ask you son himself about it?

like say you notice him spacing out in the middle of eating or seeming to forget that you all just talked about Cats?

 

maybe he knows that his mind is on ...   ? Girlfriend trouble, school situation...  something that distinguishes between wandering mind and seizure, for example.  

 

I’d also maybe ask directly about weight loss and nutrition. 

And maybe even ask if he has ever tried a vape or joint-or anything else like that. .  (The reason I thought maybe vape is it’s so common now, not illegal at his age afaik, goes with weight loss—more than pot.  ,lAnd might feel subjectively like it is enhancing focus or lifting mood.  regular cigarettes for that matter could be a factor, but if he had been health conscious he might have known to stay away from those.  Whereas vape was promoted as a healthy alternative?) 

 

[Pen]

You could enter the food he eats on an app like Cronometer and see what common nutrients he might be low in, or what might be excessive. 

[TheReader]

40 minutes ago, Pen said:

Btw, Did you ask you son himself about it?

like say you notice him spacing out in the middle of eating or seeming to forget that you all just talked about Cats?

 

maybe he knows that his mind is on ...   ? Girlfriend trouble, school situation...  something that distinguishes between wandering mind and seizure, for example.  

 

I’d also maybe ask directly about weight loss and nutrition. 

And maybe even ask if he has ever tried a vape or joint-or anything else like that. .  (The reason I thought maybe vape is it’s so common now, not illegal at his age afaik, goes with weight loss—more than pot.  ,lAnd might feel subjectively like it is enhancing focus or lifting mood.  regular cigarettes for that matter could be a factor, but if he had been health conscious he might have known to stay away from those.  Whereas vape was promoted as a healthy alternative?) 

 

We have not asked him directly this time, specifically. We have asked him in the past  -- the zoning out, and a little the freezing up while eating, have been ongoing symptoms of the anxiety/depression/whatever he was on meds for that wasn't really totally working, for a very long time now. It ebbs & flows, comes & goes, etc. Many many many many times over the past.....two years? Possibly more? I really don't remember anymore but could figure it out..... we've interrupted him mid conversation to ask "Hey, you there?" because he's zoned out. When we catch him not eating, we prompt him to eat, and we ask "You okay? What's on your mind?" (generally we get blank stares, reassurances he's fine, or, "huh? oh, umm, nothing..." in response). 

It is often enough, across different enough scenarios, that I *really* don't think it's just mind wandering/thinking about school/thinking about a girl/thinking about whatever. 

He is, usually, as best we can tell, aware enough to pick up/continue the conversation after he zones out. More or less. 

He is not, as best the therapist and psych can tell, hearing voices (one of the things the psych I think considered, whether he was freezing up with us/people b/c he was listening to an internal voice; I am relatively certain, though she never said, that schizophrenia was one of the things she considered). 

We haven't yet asked about the weight loss.  Well, I commented on it the day I noticed I could feel his...whatever bone that is at the top of your shoulder? shoulder blade? collar bone? I don't know my anatomy enough to know, but I put my hands on his shoulders in an affectionate gesture (standing behind him) and they were so pronounced....much more than I recall. I commented, but was surprised. He chuckled and said he was eating and fine. I dropped it, because if we ask him anything uncomfortable in the least, he completely clams up and stops talking entirely. Stuff that seems innocuous to ask.....he doesn't tend to think so and won't answer us. So, I haven't pushed on this yet (this was just the time before last that we saw him, that I realized the weight loss; he always wears a loose pullover sweater when he sees us; and, he's already thin, so.....). 

I have not asked him directly about vaping, etc, again, because he clams up. He will be home for Thanksgiving (and we just noticed all of this other stuff this weekend) and we do plan to sit him down and discuss all of this with him and ask about much of this. I think he'd be honest, or that we'd be able to tell if he was lying. I think. 

38 minutes ago, Pen said:

You could enter the food he eats on an app like Cronometer and see what common nutrients he might be low in, or what might be excessive. 

That's another good idea; I'll do that/have him do that with us when he's home. 

[Lori D.]

Sorry if this is a repeat -- did not read previous responses in the thread. But...

It almost sounds like micro seizures (zoning out) and mini black-outs (not remembering things discussed earlier). Possible brain tumor or other issue that needs a scan to see that something is not right physically and is causing these symptoms??

[ktgrok]

You can check youtube for videos of absence seizures to compare. 

Also, keep in mind that eating enough nutrients doesn't mean he is absorbing them properly - something like IBD or Celiac could cause him to not absorb properly. Can you ask him if he has any GI symptoms?

Also, is anorexia a possibility?

[TheReader]

6 minutes ago, HeighHo said:

This sounds like multiple absence seizures or a tumor.  when you skype with your dc, do you see it happen as you are talking?  You should make a recording and get him in to the GP and the neurologist asap. The GP should run down the nosebleeds; does your dc bruise more easily than most people?  Show the neuro the recording, you can give a copy to the neuro before the visit. (make sure you get consent from your child to make and show that recording)

What does your son describe as happening while you see a seize up?  Does he lose vision and hearing and movement?

 

 

he has not admitted to losing vision/hearing/movement in that state when it happens, but the psychiatrist did compare it to being catatonic (how it appears from the outside). 

I'll have to see if he'd let us record a skype or face time with him; we normally just talk on the phone or visit in person. It's hard to face time him because he likes to talk while walking around, and the movement is kind of distracting to watch. Although I've never noticed it happen when he is walking around talking to us, so maybe that means something. 

It is highly likely that the neuro would see it first hand anyway when we get him in; it really happens that often. 

He does bruise I guess, but he and I are both pretty fair skinned so I wouldn't say he bruises any more easily than I do.The nosebleeds have happened off and on for a long time, once I stop to think about it. 

My sister has chiari malformation, her kids have Ehler Danlos (just the loose joints part/type), and my aunt/cousin/maybe me has POTS....so we do have family history of random things. His brother has Tourette's. I will make sure the doctor knows about all of that. 

[Ottakee]

I agree with the medical first.  I would ask for complete blood work, urinalysis, etc.  Thankfully our psychiatrist did all of this.  She ordered the stuff before starting meds and my dd was anemic, hypothyroid, had a bladder infection, AND the EEG showed seizures.  OK, she STILL has some mental health issues but we had to address the physical stuff first.  We did the MRI too.

Yep....ask for it all.....vitamin levels, thyroid, maybe a sleep study, EEG, MRI, etc.

[TheReader]

2 minutes ago, Ktgrok said:

You can check youtube for videos of absence seizures to compare. 

Also, keep in mind that eating enough nutrients doesn't mean he is absorbing them properly - something like IBD or Celiac could cause him to not absorb properly. Can you ask him if he has any GI symptoms?

Also, is anorexia a possibility?

I'll do that; thanks. 

I'm reading up on Celiac now; it does seem to have a lot of matches.  I'll ask him about GI symptoms. 

Eating disorders definitely came to mind, yes. I imagine if we can get him in with his therapist, she'll ask about that (and I think he'd be honest with her; he has a good relationship with her). (also, she's also an Aggie, and their code of honor is that an Aggie does not lie, cheat or steal; he takes that seriously, and I think would never lie to her, another Aggie, even if he might lie to us.)

[TheReader]

3 minutes ago, Ottakee said:

I agree with the medical first.  I would ask for complete blood work, urinalysis, etc.  Thankfully our psychiatrist did all of this.  She ordered the stuff before starting meds and my dd was anemic, hypothyroid, had a bladder infection, AND the EEG showed seizures.  OK, she STILL has some mental health issues but we had to address the physical stuff first.  We did the MRI too.

Yep....ask for it all.....vitamin levels, thyroid, maybe a sleep study, EEG, MRI, etc.

oh, wow, the psychiatrist did all of it?? We really need to find a better one. :sigh: 

We will be asking for all of this; thanks. 

[Storygirl]

Some of the characteristics you describe about rule following, etc., made me think of spectrum traits, so I googled autism and zoning out, and I do get quite a few things coming up about people with ASD zoning out. Although I agree that absence seizures could look like this (my brother used to have them years ago and was diagnosed with epilepsy), if he might possibly be on the spectrum, it could be a related behavior.

The orange on the teeth does sound like the result of oral hygiene issues to me (we've had orange build up on teeth with some of my kids, periodically), so I think a good cleaning will help. Perhaps he will need to set reminders on his phone to be cued to brush regularly. If he just uses a regular toothbrush, you could get him an electric one. If it remains a continuing problem, perhaps he should have dental appointments every three or four months for a cleaning, instead of the standard six month interval.

The evidence of a nose bleed would not really be concerning, in my opinion, except as another indication of a lack of hygiene and self care. If he was good at keeping up in those areas when he was a teen at home, I think a change in hygiene can be an indicator of depression or other emotional issues, but mood can be affected by physical health, so I agree that it's worth having a medical check up. If he was inconsistent with oral care and other hygiene when he lived at home, perhaps his executive function needs some propping up in that area, even at his age.

I'm sorry. He's fortunate to have you looking for answers on his behalf, and I hope that he will accept the help you offer.

Edited November 20, 2019 by Storygirl

[Pen]

2 hours ago, TheReader said:

that's also true; thanks. 

googled the teeth; I think from various googling, it's just bad tartar build up honestly. That's the closest image I can find, anyway. Slightly more orangey- than yellow, but that's the pattern/placement of the build up and more what it looked like. So, poor hygiene, plus overdue for the dentist anyway because school/being away from home, plus probably eating more starchy foods/sugary foods leading to faster/more tartar created in the first place.......that sums up that, probably. 

We'll get him into the dentist as soon as he's home long enough, but at least that relaxes me about that part of things. 

I appreciate you chiming in and being patient with me; thanks. 

ETA: The teeth at the pic in this link are pretty much what his look like. https://wmsmile.com/what-is-tartar/

 

On one hand it seems reassuring that teeth are probably just tartar .

But in some ways that increases the sense that the zoning out is not from something that will be able to be remedied just with much better food intake.   Though that is still possible.  

I think it sounds like he needs a neurologist appointment ASAP, to rule out potentially serious brain problems (tumor, seizure disorders...).  

[Pen]

13 minutes ago, TheReader said:

I'll do that; thanks. 

I'm reading up on Celiac now; it does seem to have a lot of matches.  I'll ask him about GI symptoms. 

 

He also could be celiac (or wheat / gluten sensitive) without  GI symptoms. 

 

13 minutes ago, TheReader said:

Eating disorders definitely came to mind, yes. I imagine if we can get him in with his therapist, she'll ask about that (and I think he'd be honest with her; he has a good relationship with her). (also, she's also an Aggie, and their code of honor is that an Aggie does not lie, cheat or steal; he takes that seriously, and I think would never lie to her, another Aggie, even if he might lie to us.)

 

What’s an Aggie? 

[Selkie]

Any history of OCD? Your mention of him feeling excessive guilt made me wonder about that. Also the fact that his brother has Tourette's, since OCD and Tourette's/tics are often found in the same family tree. If he does have OCD, his "zoning out" could be him doing some kind of mental ritual in his head.