Jump to content

Menu

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


TheReader
 Share

Recommended Posts

42 minutes ago, TheReader said:

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. 

We had a phenomenal psychiatrist.  We followed her to 6 different offices in 5 different cities to keep her.  Sadly she moved to NM....which is a bit too far to commute.

Link to comment
Share on other sites

21 minutes ago, Selkie said:

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.

That's actually a really good possibility.  I don't think it's the most likely one.  I still think this is neurological and impacting his eating, sleeping, and hygiene, but I'd put that on the list.  Along with the possibility of Celiacs.  

Link to comment
Share on other sites

1 hour ago, HeighHo said:

Bloodwork needs done if he's bruising that much and nosebleeding.  

How are the grades?  Is he freezing in class?

I wouldn't say he bruises *excessively* just that with fair skin tone, he bruises easily. But that's been a lifelong thing and nothing alarming has ever been in his bloodwork before....

Grades....well. Last semester, he w/drew and came home early. This semester he *should* (we hope, fingers crossed, please please please) make Cs in everything. So...better. Not stellar. Not horrible (particularly for the school and program he's in). 

I have no idea his performance in class, if he zones out or not then. Maybe, yes. He could, if he would do it, sign up with disability services just from the already dx'ed anxiety, the meds he was on, etc. and get a note taker &/or extra time on assignments &/or extra time on tests. He refuses. 

Link to comment
Share on other sites

1 hour ago, Storygirl said:

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.

Thank you; he was good with keeping up with all of these things before. 

When he was here, in high school and the 2 yrs after while attending the local community college, he did great. Managed his classes, had As in everything, the random B here and there. Nothing horrible. But he kept up with everything. He started going downhill the last year of that, a little before he got pneumonia, and then we thought the pneumonia explained the sleeping, so then we just kept waiting for him to get better, only he didn't. And here we are now, a few years later. 

But, the hygiene thing is a definite change. He is past-due for a dentist visit, for sure, but still. 

 

Link to comment
Share on other sites

1 hour ago, Pen said:

 

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...).  

I think I agree; I'm calling our providers tomorrow morning to get the ball rolling. 

1 hour ago, Pen said:

 

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

 

 

What’s an Aggie? 

I saw that about Celiac; it's definitely one of the things we'll ask about. 

An Aggie is the mascot from his school; his therapist graduated from the same college (Texas A&M). It's kind of cultish, in a not-actually-a-cult kind of way, but a once-an-Aggie, always an Aggie kind of way. 

Like, Texans are pretty proud to be Texans, just in general. I consider myself a Texan even before an American, honestly, and Texans are pretty vocal about it, passionate about it, etc. Aggies (so, anyone that attended A&M, ever) are kind of a zillion times more passionate about being Aggies, in a way I really have never seen in any school, sports team, state, anything. 

Link to comment
Share on other sites

1 hour ago, Selkie said:

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.

In him, no, but he's struggled with anxiety off and on most of his life. As a young kid he'd quiz me with "what ifs" all.the.time. And some of his behaviors growing up could have been OCD-ish or Autism spectrum-y, and we did check into that over the years, and no one ever thought so. 

We do have family history of it, though (his cousin/my sister's dd)

1 hour ago, Ottakee said:

We had a phenomenal psychiatrist.  We followed her to 6 different offices in 5 different cities to keep her.  Sadly she moved to NM....which is a bit too far to commute.

Oh, I hate that for you; I'm sorry. We had a pediatrician like that. 

1 hour ago, Terabith said:

That's actually a really good possibility.  I don't think it's the most likely one.  I still think this is neurological and impacting his eating, sleeping, and hygiene, but I'd put that on the list.  Along with the possibility of Celiacs.  

At this point, I don't think we're ruling anything out. I'm reading up on everything y'all throw out there, and will make a list for him to take to the doctor based on what I read/what I've seen. 

Link to comment
Share on other sites

The thing that stood out to me was the talking out loud, quietly, before repeating himself. Am I understanding that correctly? Has he had indications of delusional thinking or mania? The zoning out could be mild catatonia. I would get a physical and neurological work-up first, as others have said. There is a condition called schizo-affective disorder that describe *some* of the symptoms. Lack of self-care, talking aloud without addressing someone, depression, etc. Has he seemed paranoid or delusional in any way? The early 20's are a time of massive brain change, coupled with stress from college or work, so anything is possible.

Do you know any of his friends/peers at college? It would be very good for you to try to connect with someone there to see if they've noticed similar symptoms. <<hugs>>

 

  • Like 1
Link to comment
Share on other sites

3 hours ago, GinaPagnato said:

The thing that stood out to me was the talking out loud, quietly, before repeating himself. Am I understanding that correctly? Has he had indications of delusional thinking or mania? The zoning out could be mild catatonia. I would get a physical and neurological work-up first, as others have said. There is a condition called schizo-affective disorder that describe *some* of the symptoms. Lack of self-care, talking aloud without addressing someone, depression, etc. Has he seemed paranoid or delusional in any way? The early 20's are a time of massive brain change, coupled with stress from college or work, so anything is possible.

Do you know any of his friends/peers at college? It would be very good for you to try to connect with someone there to see if they've noticed similar symptoms. <<hugs>>

 

More just that the repeating himself is as though he's rehearsing in his head exactly how to phrase whatever he wants to say, trying to get the pacing of it right, or the wording, or....whatever. Only, instead of thinking it, he's saying it out loud. So, not "talking to himself" in a way that suggests he's talking to something/someone he's hearing, but in a "thinking out loud" w/o realizing he's thinking *out loud*. 

The only....out of touch....kind of thinking/comments are his over-active sense of guilt about even the tiniest things. His therapist and psychiatrist both did investigate that kind of thing and everyone thinks that's not it. Or, if he is experiencing those symptoms, he's not showing it. It's a thing that's on the radar, though, for sure. 

We do have contact info for his roommate, and have a decent relationship with him; we can definitely reach out to him. We've met his main friends, also, but don't have contact info for them....I'll try and get it. We may consider, depending how things go, if we'd need to talk to the staff at the camp where he worked this summer, too; we have contact for them. 

Thanks for chiming in; it's helpful to talk all of this out. 

Link to comment
Share on other sites

Just a bit of input:

It is my understanding that Absence seizures usually don't BEGIN in adults; they are more of childhood type of epilepsy/seizure disorder. When they do happen in adults, it is not idiopathic or part of a syndrome, like with kids. With adults, there is sometimes a reason. 

So with THAT being said, I'd get into a Neuro or even see if your GP can order an EEG.

I'm very sorry your son is going thru this and I hope you get some quick answers and come up with an effective care plan.

 

  • Like 2
Link to comment
Share on other sites

I vote for going directly to a Psychiatrist. IMO they are the best qualified person to (hopefully) determine whether a problem is Physical or Mental or both.  They can refer to appropriate specialists for treatment.

Failing that, I would vote for a caring M.D.

Some issues involved here: First, the patient is 22 years old so if he doesn't understand that he has these issues, or, even acknowledge that he has issues, other people are not involved. He must seek help for himself. Others cannot do that for him.

Interesting to me that he was OK during the Summer Camp and now that he is away at school, having these issues. Are they caused by stress at school, or, something new, that has come up with his health now that he is away at school?

Good luck to him!

  • Thanks 1
Link to comment
Share on other sites

24 minutes ago, unsinkable said:

Just a bit of input:

It is my understanding that Absence seizures usually don't BEGIN in adults; they are more of childhood type of epilepsy/seizure disorder. When they do happen in adults, it is not idiopathic or part of a syndrome, like with kids. With adults, there is sometimes a reason. 

So with THAT being said, I'd get into a Neuro or even see if your GP can order an EEG.

I'm very sorry your son is going thru this and I hope you get some quick answers and come up with an effective care plan.

 

Thanks; I did not realize that. I'll look into it. 

I did call and explain to the GP what's going on, and got him an appt for when he's down over Christmas break for a full physical, blood work, whatever needs ordered. I'll discuss more with the doctor when I go with him and hopefully they'll order anything needed. I know that they *can* order all of the things (we have a doctor affiliated with a large network, so whatever they can't do there, they'll send us out for). 

Also got a call into the therapist, left a message, she's going to call me back during a break in patients this afternoon. 

Link to comment
Share on other sites

1 hour ago, TheReader said:

More just that the repeating himself is as though he's rehearsing in his head exactly how to phrase whatever he wants to say, trying to get the pacing of it right, or the wording, or....whatever. Only, instead of thinking it, he's saying it out loud. So, not "talking to himself" in a way that suggests he's talking to something/someone he's hearing, but in a "thinking out loud" w/o realizing he's thinking *out loud*. 

The only....out of touch....kind of thinking/comments are his over-active sense of guilt about even the tiniest things. His therapist and psychiatrist both did investigate that kind of thing and everyone thinks that's not it. Or, if he is experiencing those symptoms, he's not showing it. It's a thing that's on the radar, though, for sure. 

We do have contact info for his roommate, and have a decent relationship with him; we can definitely reach out to him. We've met his main friends, also, but don't have contact info for them....I'll try and get it. We may consider, depending how things go, if we'd need to talk to the staff at the camp where he worked this summer, too; we have contact for them. 

Thanks for chiming in; it's helpful to talk all of this out. 

 

Has anyone he has had significant dealings with (parent, grandparent, important teacher, boss...) tended to be critical?  He could be rehearsing and apologizing to try to ward off criticism.

 

Link to comment
Share on other sites

4 minutes ago, Lanny said:

I vote for going directly to a Psychiatrist. IMO they are the best qualified person to (hopefully) determine whether a problem is Physical or Mental or both.  They can refer to appropriate specialists for treatment.

Failing that, I would vote for a caring M.D.

Some issues involved here: First, the patient is 22 years old so if he doesn't understand that he has these issues, or, even acknowledge that he has issues, other people are not involved. He must seek help for himself. Others cannot do that for him.

Interesting to me that he was OK during the Summer Camp and now that he is away at school, having these issues. Are they caused by stress at school, or, something new, that has come up with his health now that he is away at school?

Good luck to him!

We don't currently have a good relationship with any psychiatrist (the one who was treating him, he more or less bailed on when he went off for the summer and dropped his meds, and we never liked her anyway), but I did put a call into his therapist and am going to get her input on what to do/where to go from here. She's calling me back this afternoon. 

I made an appt for our regular doctor, as well, but can't get him in there until mid-December when he's home after finals (no openings over Thanksgiving break). But I was able to explain to the nurse on the phone a bit about what we're worried about, and so they're prepped for a full, complete physical with blood work, tests, etc. 

Camp....he was...okay...during camp; mostly exhausted. He said to us he dropped the meds then because he decided/realized that as long as he stays busy, he's fine. But also, during camp, he was eating very well (camp provided, well balanced meals 3x/day), getting exercise, physical activity, sunshine, etc. So this did help the anxiety aspect, because he just didn't have *time* to worry about things, focus on stress, etc. and also he didn't have the stress of school. 

So, switch to school, he has so much pressure on himself (self-created, not from us) to do well, the classes are HARD, all consuming, he's not eating well, and other than walking to/from class, he's not getting exercise.....so poor nutrition and higher stress/anxiety.....makes sense. 

Link to comment
Share on other sites

2 minutes ago, Pen said:

 

Has anyone he has had significant dealings with (parent, grandparent, important teacher, boss...) tended to be critical?  He could be rehearsing and apologizing to try to ward off criticism.

 

I really don't think so, no. Not sure about teachers. 

Normal amounts of parent/child "hey, you really need to be better at this" type of thing over the years. Definitely not what I'd call "tending to be critical" though. I'm personally very sensitive to that; I grew up with an emotionally abusive stepdad. I make a point to be encouraging, supportive, etc. 

Link to comment
Share on other sites

UPDATE/INFO -- 

Looking at absence seizures, everything says they last less than a minute. His periods of zoning out/freezing up last.....a while. Minutes, for sure. I'm not positive how long they'd last if we didn't/someone didn't prompt him, "wake him up", get his attention, etc. but it's longer than either a typical or atypical absence seizure (and maybe a focal aware seizure might fit, not sure). 

His therapist is calling me back TODAY and we'll discuss everything with her and hopefully set up an appt or get her advice on what to do/who to see. 

The doctor's office wouldn't let me leave a message for our doctor to call back, because they don't have a release form on file from him so they can talk to me. They did let me make an appt for a physical (and I did explain the main symptoms to the scheduling nurse), with the doctor, for mid-December once he's home from finals.

If he gets worse/seems worse at Thanksgiving, or his therapist suggests, we'll speed things up if necessary, find a doctor up there he can see, get him down here during the week to see our doctor, etc. 

I didn't realize how worried I was about all of this until I started trying to explain it to the nurse and almost started crying. 

  • Like 1
  • Sad 1
Link to comment
Share on other sites

 

10 minutes ago, TheReader said:

Camp....he was...okay...during camp; mostly exhausted. He said to us he dropped the meds then because he decided/realized that as long as he stays busy, he's fine. But also, during camp, he was eating very well (camp provided, well balanced meals 3x/day), getting exercise, physical activity, sunshine, etc. So this did help the anxiety aspect, because he just didn't have *time* to worry about things, focus on stress, etc. and also he didn't have the stress of school. 

 

And I assume he seemed better from outside perspective as well as his inner sense.

Then that’s a huge help toward understanding at least some of what he needs.  

It seems like It cant just be keeping busy because college is busy.   ???

It seems like it must be some combo of exercise, lower stress, better food, sunshine...  

What can be done to be more like the camp environment in his current circumstances? 

How can he get balanced meals 3x daily?  and daily exercise? 

Light box and/or vitamin D3 as partial help in place of sunshine?  Going out in what sun there is middle of day with shorts and running shirt that exposes some skin to sun?  (I know someone who said he became a landscaper because he could only feel okay if he was outside most of day.) 

How can stress be lowered?  Yoga? CBT? Less stressful college? 

Could he be put on a campus meal plan, which would give at least somewhat better food and get him to at least walk to and from 3x daily? Maybe run to and from?  Or would he just not do it and stay depressed at home?  

Does he know how to cook  or prepare raw foods and have ways of doing that simply and healthily?  Or start each day with a relatively healthy smoothie?

 

Link to comment
Share on other sites

4 minutes ago, Pen said:

 

 

And I assume he seemed better from outside perspective as well as his inner sense.

Then that’s a huge help toward understanding at least some of what he needs.  

It seems like It cant just be keeping busy because college is busy.   ???

It seems like it must be some combo of exercise, lower stress, better food, sunshine...  

What can be done to be more like the camp environment in his current circumstances? 

How can he get balanced meals 3x daily?  and daily exercise? 

Light box and/or vitamin D3 as partial help in place of sunshine?  Going out in what sun there is middle of day with shorts and running shirt that exposes some skin to sun?  (I know someone who said he became a landscaper because he could only feel okay if he was outside most of day.) 

How can stress be lowered?  Yoga? CBT? Less stressful college? 

Could he be put on a campus meal plan, which would give at least somewhat better food and get him to at least walk to and from 3x daily? Maybe run to and from?  Or would he just not do it and stay depressed at home?  

Does he know how to cook  or prepare raw foods and have ways of doing that simply and healthily?  Or start each day with a relatively healthy smoothie?

 

Good ideas; I'm running out the door, but will come back to this. 

He is on a meal plan and could get food on campus 3x/day. He apparently is not doing so. He has 90 meals left, of an allotted 130. He has $485 left of an allotted $500 "campus bucks" to spend in the dining halls/campus fast food places. So...he's not eating on campus, apparently (I only saw about 3 charges on his debit to campus food places, and maybe 3 or so to off campus places). He spends about $30-ish every 2 weeks or so on groceries. I really have no idea what he's eating. 

He has a 15+ min walk to/from classes, but I don't know if he walks to class, back to his apt, back to class, back to the apt, or if he stays on campus somewhere during the day. Some of his classes are evening, so no sunshine. 

He won't even consider a less stressful college, or even time off to get *WELL* before going back. 

He does know how to cook/prepare some stuff. He's good at following a recipe and has a few favorites. His roommate cooks, but I don't know if they eat together or not (the roommate goes to bed crazy early). He at least *was* buying fruit and stuff when we were taking him shopping; he switched to shopping during the week so that he doesn't need to go when we stop in. I don't know if that was intentional, or he just got in the routine, and that's when it fit his schedule, and we never know until day of/day before if we'll see him. 

He mostly eats ready-to-eat stuff like canned soups, stews, etc. probably. 

I have to run,but I'll check in this afternoon after I talk to the therapist. 

  • Like 1
Link to comment
Share on other sites

 

3 minutes ago, TheReader said:

If he gets worse/seems worse at Thanksgiving, or his therapist suggests, we'll speed things up if necessary, find a doctor up there he can see, get him down here during the week to see our doctor, etc. 

I didn't realize how worried I was about all of this until I started trying to explain it to the nurse and almost started crying. 

 

From what you wrote, I’d push for this if possible—someone sooner and near him.  The December appointment could be a back up and second opinion, but maybe with bloodwork and mri Brain scan and/or EEG  already done, not just getting started then.  

It would be good to know if there’s an organic brain problem.  

I’d also try to get him to improve on the eating and exercise etc.  

I asked on here about a smoothie powder called Living Fuel.  No one replied, but I tried it and find it (berry type, with additional frozen fruit or banana blended in) a very expensive,  but quite good,  and reasonably fast, meal replacement option.  With a blender, and a bottle of that and maybe some bananas and/or frozen fruit, that could maybe help get his days off to a more nutrition rich start than Panda Express. 

  • Like 1
Link to comment
Share on other sites

@TheReader

Re partial or focal seizures...

Simply, those refer to seizures in one part of the brain vs the entire brain (which would be generalized) 

Then within a focal seizure, it can be with impaired awareness or not.

IME, focal with impaired awareness (used to be complex-partial) have a motor aspect...drooling, lip-smacking, picking at clothing...I

You can't "snap" someone out of a seizure or wake them up or stop it by getting their attention. I'm  not sure if you said this but I want to make that clear. What CAN happen is that you notice something isn't right, so you start saying... "joe? Joe? Hey, joe? Are you OK?" And at some point the seizure ends but it isn't bc you're saying Joe's name ( I just used that name, I don't know your son's name!.haha)

There is a "new" push to rename seizures in order to have them better reflect what is happening.

https://www.epilepsy.com/learn/types-seizures/new-terms-seizure-classification

  • Like 2
Link to comment
Share on other sites

25 minutes ago, TheReader said:

The doctor's office wouldn't let me leave a message for our doctor to call back, because they don't have a release form on file from him so they can talk to me.

Did you make it clear that it was you who wanted to talk to them, and not the other way around?  If they won't go this route, you might consider writing up a letter stating your concerns.  This may be a better way to go anyway since that way everything will be in one spot.

  • Like 3
  • Thanks 1
Link to comment
Share on other sites

12 minutes ago, HeighHo said:

Call the Student Health office on campus and ask who can help you.  The weight loss and not eating while on a meal plan is a flag for them.  They can and will help...its called Student Wellness office at my son's campus. My kid had to call for a roommate that was heading for crisis, and they told him call when you sense something wrong, don't wait as intervention is there for early signs. 

One of the small things that students sometimes don't know is that they can get takeout if their classes/jobs are scheduled such that they can't get a meal during meal time.  A bag lunch will be available for pickup for example, or they can get two lunches one  day and store one for the next day.

Also, his medical professional can send the order for bloodwork to a place near campus.  You can then pick him up on the next visit, get the bloodwork done, and the results will be available by the time he is on break.

 

Some of these things differ hugely place to place (most people don’t check into such services when they evaluate colleges), but all of this is worth trying for IMO.  

The medical professional might not be willing to order bloodwork without seeing the person— but maybe the therapist (or someone) has a local to the college medical professional to recommend. 

Link to comment
Share on other sites

1 hour ago, TheReader said:

 

He is on a meal plan and could get food on campus 3x/day. He apparently is not doing so. He has 90 meals left, of an allotted 130. He has $485 left of an allotted $500 "campus bucks" to spend in the dining halls/campus fast food places. So...he's not eating on campus, apparently (I only saw about 3 charges on his debit to campus food places, and maybe 3 or so to off campus places). He spends about $30-ish every 2 weeks or so on groceries. I really have no idea what he's eating. 

 

This would be concerning to me.  My daughter was on a full meal plan last year and has a similar amount of walking.  She averages 5-7 miles a day of hilly walking.  When she was on Ritalin last year (an appetite suppressant) and was stressed from school and work, it was too easy to forget to eat and she ate maybe once a day.  She came home a wreck, hair brittle and falling out, in constant crisis mode and just completely crashed. It was all nutritional for her and she bounced back within a couple of weeks.

She never zoned out, but she also never dropped into actually skinny territory (she's tended towards a heavier weight).  But the nutritional deficiencies were very obvious. 

Edited by SanDiegoMom in VA
  • Like 2
  • Thanks 1
Link to comment
Share on other sites

44 minutes ago, HeighHo said:

 

Yes, the CC here has nothing for student wellness, but the 4 year colleges all do - and they all explain the procedure and services to the students as part of orientation.  Literally saved my son's roomie at least six months of his life. 

ime The bloodwork for a physical can be ordered in advance, the rest will have to be another draw.  

 

As a huge university, I am sure Texas A&M would have a campus health service.  I don’t dispute existence of one. .  Not all college health centers where they exist, are of equal quality is what I meant by it differing place to place.  Some are top notch. Some not.  (And some are only equipped to deal with fairly minor and common ailments. Which may or may not fit OP’s son.) 

 

 I don’t know if it would be as helpful to OP and her son as your son’s was to his roommate.  I hope so.  

Maybe they could get bloodwork started at the Campus health center. Maybe there’s even capacity to do an EEG or other testing.  

 

(ETA: in any case, I think your suggestion of at least trying the campus health service to see what they can offer right there and ASAP  is an excellent one.) 

Edited by Pen
  • Like 1
Link to comment
Share on other sites

3 hours ago, Pen said:

 

 

From what you wrote, I’d push for this if possible—someone sooner and near him.  The December appointment could be a back up and second opinion, but maybe with bloodwork and mri Brain scan and/or EEG  already done, not just getting started then.  

It would be good to know if there’s an organic brain problem.  

I’d also try to get him to improve on the eating and exercise etc.  

I asked on here about a smoothie powder called Living Fuel.  No one replied, but I tried it and find it (berry type, with additional frozen fruit or banana blended in) a very expensive,  but quite good,  and reasonably fast, meal replacement option.  With a blender, and a bottle of that and maybe some bananas and/or frozen fruit, that could maybe help get his days off to a more nutrition rich start than Panda Express. 

That's a good suggestion; I will see what smoothie stuff we can find, see if we can find the one you mentioned, etc. I don't know if they have a blender; I'll get him one if not. This is a good idea, and something he could and I think would do. 

3 hours ago, Pen said:

Maybe he could use something like an Instant Pot? And cooking together and freezing ahead when you visit, so he is eating more of reheated home made food and less processed foods? 

This was suggested to me yesterday by an IRL friend, too; DH and I are planning to do this. I like (a LOT) the idea of cooking with him to freeze ahead while he's home over Thanksgiving and Christmas, and then sending home with those. Not just the meals but then the recipes, know-how, etc., to cook stuff on his own. This is a really good plan. 

3 hours ago, SanDiegoMom in VA said:

This would be concerning to me.  My daughter was on a full meal plan last year and has a similar amount of walking.  She averages 5-7 miles a day of hilly walking.  When she was on Ritalin last year (an appetite suppressant) and was stressed from school and work, it was too easy to forget to eat and she ate maybe once a day.  She came home a wreck, hair brittle and falling out, in constant crisis mode and just completely crashed. It was all nutritional for her and she bounced back within a couple of weeks.

She never zoned out, but she also never dropped into actually skinny territory (she's tended towards a heavier weight).  But the nutritional deficiencies were very obvious. 

 

Thank you for this; one of the meds he was on (that he stopped in the summer) was actually one that *increased* appetite, so it could be contributing now to him losing weight -- he stopped that med, his appetite dropped back to how it was (possibly lower), thus he's eating less. 

He's already skinny, so that would impact him early on. 

Link to comment
Share on other sites

4 hours ago, EKS said:

Did you make it clear that it was you who wanted to talk to them, and not the other way around?  If they won't go this route, you might consider writing up a letter stating your concerns.  This may be a better way to go anyway since that way everything will be in one spot.

I think if the doctor was/had been available to talk to me right then, they could have handed her the phone and let me talk to her. Since they were needing to leave a message, she said since he didn't have the release form on file, the doctor couldn't technically call me back, about him, even for that. 

She did offer to have me come and pick up the release form, have him sign it, bring it back and then it would be fine. She also said it would be fine for me to come in with him and talk to the doctor before the appointment, and she was making notes on what all is going on so the doctor would have an idea what all to expect at the appointment. 

Link to comment
Share on other sites

4 hours ago, unsinkable said:

@TheReader

Re partial or focal seizures...

Simply, those refer to seizures in one part of the brain vs the entire brain (which would be generalized) 

Then within a focal seizure, it can be with impaired awareness or not.

IME, focal with impaired awareness (used to be complex-partial) have a motor aspect...drooling, lip-smacking, picking at clothing...I

You can't "snap" someone out of a seizure or wake them up or stop it by getting their attention. I'm  not sure if you said this but I want to make that clear. What CAN happen is that you notice something isn't right, so you start saying... "joe? Joe? Hey, joe? Are you OK?" And at some point the seizure ends but it isn't bc you're saying Joe's name ( I just used that name, I don't know your son's name!.haha)

There is a "new" push to rename seizures in order to have them better reflect what is happening.

https://www.epilepsy.com/learn/types-seizures/new-terms-seizure-classification

Oh, yes, I do completely get that. I had only mentioned because a lot of people suggested absence seizures, but what I was reading on those said they're brief, 30 seconds or shorter in most cases, 60 seconds or shorter almost always. His spells of "zoning out" last longer. 

I wasn't 100% clear on the motor aspect of the focal seizures; sounds like this is not that, then, either. He does sometimes pick at his sleeve, but more in a nervous habit kind of way and not usually coinciding with the zoning out. 

Link to comment
Share on other sites

4 hours ago, HeighHo said:

Call the Student Health office on campus and ask who can help you.  The weight loss and not eating while on a meal plan is a flag for them.  They can and will help...its called Student Wellness office at my son's campus. My kid had to call for a roommate that was heading for crisis, and they told him call when you sense something wrong, don't wait as intervention is there for early signs. 

One of the small things that students sometimes don't know is that they can get takeout if their classes/jobs are scheduled such that they can't get a meal during meal time.  A bag lunch will be available for pickup for example, or they can get two lunches one  day and store one for the next day.

Also, his medical professional can send the order for bloodwork to a place near campus.  You can then pick him up on the next visit, get the bloodwork done, and the results will be available by the time he is on break and in the appointment.

These are good suggestions; I'll do this. Thank you. Getting the bloodwork sent up near campus and then results sent home for the appt is a very good idea, too; I'll look into that and see if it's possible. 

Link to comment
Share on other sites

UPDATE #2 -- talked to the therapist; she suggested we talk with the psych; to her it sounds neurological. She also said talk with the roommate if possible to check his daily routines/get info on how he's doing. She put him on the cancellation list for Weds before Thanksgiving, just in case, and suggested that for sure we get him in with *someone* sooner rather than later. 

I talked with DS also. He says he does sometimes feel like he's tripping over his words (but wasn't aware how much/how often he repeats his words/sentences).

He says he's eating - lunch in the apartment, dinner on campus. Calculating number of meals...that's roughly accurate.

He had no idea what I was talking about when I said he freezes up while eating; when I explained he said "Oh, I'm just listening, but I can be more aware of when it looks awkward."  

He says he's doing fine mentally, his thoughts are good, "just trying to stay on top of everything." 

He sounded a lot better today than over the weekend, and was a lot more chatty. 

 

  • Like 2
Link to comment
Share on other sites

28 minutes ago, TheReader said:

That's a good suggestion; I will see what smoothie stuff we can find, see if we can find the one you mentioned, etc. I don't know if they have a blender; I'll get him one if not. This is a good idea, and something he could and I think would do. 

 

Very pricey!  I was hesitant to try it, but we are now are on bottle number 3, and my son just texted me asking if I could have fresh smoothie ready for when he gets home .  Others I have tried have tasted horrible.   Available online at livingfuel.com    We have the ultra berry or some name like that with the most fruit Orac.  There’s also a regular berry.  I haven’t tried the greens one.  Yet.  

 

 

 

  • Like 1
Link to comment
Share on other sites

17 minutes ago, TheReader said:

UPDATE #2 -- talked to the therapist; she suggested we talk with the psych; to her it sounds neurological. She also said talk with the roommate if possible to check his daily routines/get info on how he's doing. She put him on the cancellation list for Weds before Thanksgiving, just in case, and suggested that for sure we get him in with *someone* sooner rather than later. 

I talked with DS also. He says he does sometimes feel like he's tripping over his words (but wasn't aware how much/how often he repeats his words/sentences).

He says he's eating - lunch in the apartment, dinner on campus. Calculating number of meals...that's roughly accurate.

 

Good.  Things coming along! 

17 minutes ago, TheReader said:

He had no idea what I was talking about when I said he freezes up while eating; when I explained he said "Oh, I'm just listening, but I can be more aware of when it looks awkward."  

 

But you seem to know he doesn’t seem to be aware even if he thinks he is listening.  

17 minutes ago, TheReader said:

He says he's doing fine mentally, his thoughts are good, "just trying to stay on top of everything." 

He sounded a lot better today than over the weekend, and was a lot more chatty. 

 

 

That’s good. 

  • Like 1
Link to comment
Share on other sites

The guilt: scrupulosity? It's a type of OCD where you feel guilty about everything and constantly think you're doing something wrong/immoral. It can lead to ritualizing to cope with the intrusive thoughts.

So maybe a combo of depression (fatigue/lack of self-care/not eating), anxiety, plus scrupulosity. If so, all very very treatable.

I'm so glad he sounded better today. ❤️

  • Like 2
Link to comment
Share on other sites

I would start with blood work (B12, iron, vitamin D, and thyroid hormones TSH 3 and TSH 4). I would say that 75% of what you described happened to me two years ago. I did not feel pain or sick, but could not remember anything. I would drive my son to karate or piano lesson, and asked him if I stopped on stop sign near the house. There were conversations I had, and I did not remember. At that time post-it was my best friend. I was so bad that I had to write on the paper to call my mom.  I felt tired, but not really sick. My thyroid numbers were in the range of normal (a bit higher for my age, but still normal), but TSH3 and TSH4 were not. I was anemic because my body can't absorb vitamin B12 from the food. Iron was 2 and if I remember well lowest normal number is 15. I was repeating words because I could not concentrate on what I was talking and repeating gave me chance to sort my thoughts. I was always cold, and I had problems with breathing, excessive yawning and sleeping. I also had anxiety problem and severe panic attacks. I have never had those kind of problems before. My heart bit was very high too, but blood pressure was normal. Everything was a bit messed up, but I was not feeling sick enough to go to check what is going on. I blamed my age... I am 49.

 

 

Edited by Vanchy
Link to comment
Share on other sites

On 11/19/2019 at 6:37 PM, TheReader said:

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. 

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

 

Please don't stop asking questions because he clams up.  Find a way to get him to talk to you. Be honest with what you are seeing and your concerns, even if it is difficult to say/hear.  My DD has had eating issues for years that she never told us about,.  I could sense there was something wrong, but when I asked she either refused to answer or she laughed it off.  I didn't want to make a big deal about it (lots of advice not to point out food issues/weight with teenage girls), but in hindsight... Wow, do I wish I had had the difficult conversations years ago.  It doesn't mean our path would be any easier, but it would have been different (and, I like to think, better as well)

I don't know how to get him to talk to you, but I believe that even if he doesn't answer, him knowing that you know something is wrong with him, makes you so much more approachable and hopefully he'll be able to tell you what is going on sooner and then he can get the help he needs.

Hugs to you.  It is so hard to watch our adult children struggle

Link to comment
Share on other sites

Lots of good advice here already, but what is his sleep like now and what was it like as a child?

  • Are his bedtimes and wake up times consistent?
  • Is he staying up too late? Getting too little sleep?
  • Does he fall asleep quickly and is his sleep uninterrupted? Consistent deep sleep — non-REM — is very important for keeping anxiety at bay.
  • Any history of sleep paralysis or hypnagogic (falling asleep) or hypnopompic (waking up) hallucinogenic dream states?
  • Any sleepwalking?
  • As a child, did he ever have trouble regulating his temperature when he went to sleep? Any soaked sheets or initial overheating?

Here is a short article about the importance of consistent deep sleep to prevent or tamp down anxiety:

https://greatergood.berkeley.edu/article/item/how_deep_sleep_can_soothe_your_anxious_brain

The eating problems sound like depression. Could he be white-knuckling his symptoms to avoid taking the meds? Does he dislike how he felt taking the meds? There are other treatments he could try, if so.

It also could be that he has two or more problems occurring at the same time.

You are doing a great job jumping on this, btw. It’s very hard to help college-aged kids especially if they are so far away.

Edited by BeachGal
added a question
  • Like 2
Link to comment
Share on other sites

4 hours ago, GinaPagnato said:

The guilt: scrupulosity? It's a type of OCD where you feel guilty about everything and constantly think you're doing something wrong/immoral. It can lead to ritualizing to cope with the intrusive thoughts.

So maybe a combo of depression (fatigue/lack of self-care/not eating), anxiety, plus scrupulosity. If so, all very very treatable.

I'm so glad he sounded better today. ❤️

thank you for supplying a word for this!! I have tried, unsuccessfully, to stress to his therapists/doctors that this hyper-guilt-complex-thing was an issue, but no one ever supplied a *name* for it or addressed it as a separate thing. Thank you!!

And, me too. I have been reflecting on things, and, when he *does* talk to us lately, it *is* more pleasant/not depressed sounding. His executive function is, believe it or not, *better* than last semester (aside from this freezing up thing). He's turning things in on time, making deadlines, and doing *better* in school despite these physical/neurological aspects being *worse*. 

DH and I think probably we can get him home for Thanksgiving, talk with him, keep the appt with the doctor in December, and go from there. 

  • Like 1
Link to comment
Share on other sites

22 minutes ago, jen3kids said:

 

Please don't stop asking questions because he clams up.  Find a way to get him to talk to you. Be honest with what you are seeing and your concerns, even if it is difficult to say/hear.  My DD has had eating issues for years that she never told us about,.  I could sense there was something wrong, but when I asked she either refused to answer or she laughed it off.  I didn't want to make a big deal about it (lots of advice not to point out food issues/weight with teenage girls), but in hindsight... Wow, do I wish I had had the difficult conversations years ago.  It doesn't mean our path would be any easier, but it would have been different (and, I like to think, better as well)

I don't know how to get him to talk to you, but I believe that even if he doesn't answer, him knowing that you know something is wrong with him, makes you so much more approachable and hopefully he'll be able to tell you what is going on sooner and then he can get the help he needs.

Hugs to you.  It is so hard to watch our adult children struggle

Oh, goodness; I'm sorry you went through that. 

I should clarify.....we always go back to whatever topic, in a different take on it, different route of talking about it, etc. But in that specific moment, when he just freezes up and we know we'll get zero right then, we change the subject and move on. A few days later, when he's ready, he'll talk (and we'll ask). So, Sunday we didn't ask him about the eating/freezing up but today I did, and was able to at least gauge his reaction to the questions, and get his thoughts on it all. We'll address it again when he's down and we can talk in person, so we can get across the seriousness of it all. 

And, thanks, and hugs to you too. This is seriously harder than anything we've done so far. 

  • Like 1
Link to comment
Share on other sites

15 minutes ago, BeachGal said:

Lots of good advice here already, but what is his sleep like now and what was it like as a child?

  • Are his bedtimes and wake up times consistent?
  • Is he staying up too late? Getting too little sleep?
  • Does he fall asleep quickly and is his sleep uninterrupted? Consistent deep sleep — non-REM — is very important for keeping anxiety at bay.
  • Any history of sleep paralysis or hypnagogic (falling asleep) or hypnopompic (waking up) hallucinogenic dream states?
  • Any sleepwalking?

Here is a short article about the importance of consistent deep sleep to prevent or tamp down anxiety:

https://greatergood.berkeley.edu/article/item/how_deep_sleep_can_soothe_your_anxious_brain

The eating problems sound like depression. Could he be white-knuckling his symptoms to avoid taking the meds? Does he dislike how he felt taking the meds? There are other treatments he could try, if so.

It also could be that he has two or more problems occurring at the same time.

You are doing a great job jumping on this, btw. It’s very hard to help college-aged kids especially if they are so far away.

He always had trouble falling asleep, but to my knowledge always stayed/stays asleep once he does fall asleep. As a child he did have night terrors for a little bit; nothing lately. 

I'll look into the article and see, and definitely ask him about his sleep; he said today he goes to bed "around 12" and tries to wake up "about 7" but often sleeps "till about 8 or 8:30" (which he feels is too long....we talked about that today). 

And, thanks. It is so hard. Luckily he is not too far; about 2 hrs....close enough we can go up in an emergency. Far enough that he can't come home for dinner. 

  • Like 1
Link to comment
Share on other sites

5 minutes ago, TheReader said:

Oh, goodness; I'm sorry you went through that. 

I should clarify.....we always go back to whatever topic, in a different take on it, different route of talking about it, etc. But in that specific moment, when he just freezes up and we know we'll get zero right then, we change the subject and move on. A few days later, when he's ready, he'll talk (and we'll ask). So, Sunday we didn't ask him about the eating/freezing up but today I did, and was able to at least gauge his reaction to the questions, and get his thoughts on it all. We'll address it again when he's down and we can talk in person, so we can get across the seriousness of it all. 

And, thanks, and hugs to you too. This is seriously harder than anything we've done so far. 

 

That's a great way to talk to him.  I really wish I had been able to that with my DD.  Good luck to you and him.  I hope he is able to recognize, ask for, and accept the help he needs to get healthy.

  • Like 1
Link to comment
Share on other sites

12/17 UPDATE -- (copied from edit to 1st post, for purpose of bumping so people who were following this will see it)

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 (or start on the right path to answers).  

  • Like 4
Link to comment
Share on other sites

4 minutes ago, sbgrace said:

Praying for this appointment today.  I'm so glad he's letting you go with him. 

thank you! Me too. It's needed; he asked last night what we'd even tell her. I said, "Everything that's going on." He asked, "But, what exactly? Put it in words please...." 

It's terrifying, honestly. He did share that he feels "a little bit like (he) can't function" but he meant more in the realm of "adulting" vs "can't eat unassited/unprompted" (which is what we, and others, have observed....). 

  • Like 1
Link to comment
Share on other sites

11 minutes ago, Katy said:

I'd try to record a video of the freezing up thing without him realizing if possible, he may not behave that way in front of the doctor, and the doctor will likely see something different in it than you do.  Like a seizure or something.

While this is a good idea, believe me when I say there's zero chance that the doctor won't see it firsthand. The "freezing up/zoning out" (for lack of a better term) is currently his normal state; the "coming to/waking up/zoning in" is the abnormal, infrequent, etc. at this point. 

I do have detailed notes/transcript of a phone conversation with him that I will also take, and anecdotal evidence of the fact this is happening all the time, with everyone; friends have asked about it, relatives have asked about it....she'll see it. 

I can try to get some video just in case, but.....the absolute sad truth is that video won't be necessary. (When he first saw his psychiatrist a while back, she observed it in the first appointment, and he's far worse now than he was then). 

 

  • Sad 4
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...