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

[TheReader]

28 minutes ago, itsheresomewhere said:

Demand a neurologist referral if you need it.  If your GP will order these- an eeg and a CT. 

Thank you; those are on the list. 

I explained all of our concerns in detail when I set the appointment, including that we'd be asking for those things, so hopefully it's in the notes and they'll be able to do so. I know they also are planning full blood workup, etc. 

I am hoping that the history of depression/anxiety meds doesn't get us caught in a "it's psychological/it's medical" boomerang situation. Yes, he was on meds; no, they never really helped; no, we don't think this is due to him taking himself off the meds (largely because, these symptoms never went away while he was on the meds). I guess prayers the doctor doesn't just kick us to the psychiatrist would be ideal as well. 

[Pen]

I think a video would be a good idea just in case the time he’s with the doctor would be within the rarer times he doesn’t show the freezing. 

Written description and written out requests that you can follow not to forget things during appointment and so that they can be charted could help... 

If zoned out is his main state, how does he get from place to place? Does he have a guide?  

I assume he’s not driving, biking, or operating potentially dangerous machinery?  It sounds potentially extremely dangerous to be zoning out so much. 

Has he had any head trauma? 

What did the people in the movie Awakenings.  Have?  Something where they were “frozen” in some way, wasn’t it? 

I sure hope the appointment will be a huge help toward finding answers and getting him well again!!!

 

Edited December 17, 2019 by Pen

[TheReader]

16 minutes ago, Pen said:

I think a video would be a good idea just in case the time he’s with the doctor would be within the rarer times he doesn’t show the freezing. 

Written description and written out requests that you can follow not to forget things during appointment and so that they can be charted could help... 

If zoned out is his main state, how does he get from place to place? Does he have a guide?  

I assume he’s not driving, biking, or operating potentially dangerous machinery?  It sounds potentially extremely dangerous to be zoning out so much. 

Has he had any head trauma? 

What did the people in the movie Awakenings.  Have?  Something where they were “frozen” in some way, wasn’t it? 

I sure hope the appointment will be a huge help toward finding answers and getting him well again!!!

 

I'll try for a video. 

I do have written notes; I'll type them up before we go so they make sense/are more legible; that's a good idea. 

It's hard to describe the exact state....he is getting himself to/from class (was, anyway), driving (he admitted last night that yes, he sometimes finds it hard to concentrate while driving), it's almost but not quite like he's sleepwalking. Not quite, because he's awake, but he's.....not fully present. For example, he was able to follow us through the theme park this weekend....but he lagged behind, often, enough that we ended up walking behind him (one of us) &/or alongside him, just in case. We were literally concerned we'd "lose" him (get too far ahead and he'd lose sight of us). Nevermind the crowds were so light that we were walking right onto rides, and we had zero concerns about his 19 or even 14 yr old brother keeping up. 

It's like he's swimming underwater, or something. When this very first started, I guess two years ago,  his psych was surprised he was functioning at all. At that time, he was making As in his comm. college classes -- even in this condition. We spent a while "treating" this with her suggestions (meds, etc.), until he took himself off (w/o her guidance) over the summer, while working at summer camp. But we haven't really *seen* him much since last Jan when he first went to college away; random weekends here and there (thus why it's been going on so long w/o us seeking treatment for him).

No head trauma that I am aware of; he did have pneumonia when this all started. 

I'm not familiar with that movie; I'll look it up. HIs state is hard to describe, but.....yes, it's scary.  Thank you for the prayers; I appreciate them. 

[hornblower]

Oh how scary. I'll be thinking of you. I hope your physician is full of wisdom and compassion, listens to you, sees what needs to be seen and knows what to do next. 

 

[ktgrok]

Hugs!  Please ask for autoimmune workup in the other lab work. Only recently are they realizing autoimmune stuff can initially present as neurological or psychiatric symptoms. This includes Celiac, Lupus, etc. Not hard to add those labs on while already drawing blood, and important to screen for. I THINK I remember you saying he had thyroid issues, or someone in the family did, and Celiac can go along with that. 

And INSIST on a referral to a neurologist. You want a full neurological workup ASAP. 

Edited December 17, 2019 by Ktgrok

[hippiemamato3]

1 hour ago, TheReader said:

I'll try for a video. 

I do have written notes; I'll type them up before we go so they make sense/are more legible; that's a good idea. 

It's hard to describe the exact state....he is getting himself to/from class (was, anyway), driving (he admitted last night that yes, he sometimes finds it hard to concentrate while driving), it's almost but not quite like he's sleepwalking. 

 

I'm not familiar with that movie; I'll look it up. HIs state is hard to describe, but.....yes, it's scary.  Thank you for the prayers; I appreciate them. 

He should not be driving until you ascertain what the "spells" are. I'm sorry you are going through this. It sounds terrifying. Please update when you get home.

[Pen]

Not necessarily for preparing for this medical visit, but it might also be helpful to consider if any circumstances seem to either make it more/less frequent, or more/less intense.     Seasons, indoor/outdoor, foods, environmental factors of any sort, stressors of any sort...

Did he have a high fever with the pneumonia?

Does he have low energy or fatigue easily? 

... 

 

[TheReader]

3 hours ago, Ktgrok said:

Hugs!  Please ask for autoimmune workup in the other lab work. Only recently are they realizing autoimmune stuff can initially present as neurological or psychiatric symptoms. This includes Celiac, Lupus, etc. Not hard to add those labs on while already drawing blood, and important to screen for. I THINK I remember you saying he had thyroid issues, or someone in the family did, and Celiac can go along with that. 

And INSIST on a referral to a neurologist. You want a full neurological workup ASAP. 

I will look over what all she requested; they took 5 vials and the list of things was a couple pages long. I did share our family history (we have POTS, Ehler-Danos, Rheumatoid Arthritis in our/his family history), and I *think* autoimmune is on the list of things she asked for. 

No thyroid issues, at least, none diagnosed as of yet. We have a follow up on Jan 3 to get the results of the blood work & urinalysis (soonest we could get with the holidays). 

We have an appt Jan 8th with a neurologist; she absolutely agreed/suggested it as definitely warranted. They will decide then if he needs to, or not, be referred to a psychiatrist, but I *think* everyone thinks it's slightly more likely to be physical/neurological than psychological. 

2 hours ago, Pen said:

Not necessarily for preparing for this medical visit, but it might also be helpful to consider if any circumstances seem to either make it more/less frequent, or more/less intense.     Seasons, indoor/outdoor, foods, environmental factors of any sort, stressors of any sort...

Did he have a high fever with the pneumonia?

Does he have low energy or fatigue easily? 

... 

 

I will think on all of that and journal any things I notice between now and the neuro appt; that's a good idea. He was a little better in the summer. (both summers since this started). It's hard for me to know the other stuff, since he's not lived at home since Jan 2019 (at school, so only weekends here, and sporadic ones at that). I can ask him if he still has any of his food/sleep/thought journals from when he was seeing his therapist and psychiatrist, though; maybe there'd be a correlation there. 

No unusually high fever with the pneumonia or anything sense. 

Yes low energy/tires easily. 

The doctor today was super thorough, asked him lots of questions, really dug into everything and I feel like we're on a good track to get answers. She took a detailed family history, looked back over his past records with them, asked about all kinds of stuff I wouldn't have thought of, and definitely got a very honest picture of what state he's in these days. 

[TheReader]

3 hours ago, hippiemamato3 said:

He should not be driving until you ascertain what the "spells" are. I'm sorry you are going through this. It sounds terrifying. Please update when you get home.

Yes, I agree. Now that we realize just how bad it is, we'll not let him drive himself anymore. 

[Pen]

Any Tick bites cat scratches or similar possible animal vector illnesses? 

[TheReader]

6 minutes ago, Pen said:

Any Tick bites cat scratches or similar possible animal vector illnesses? 

None back when this all started originally, no. Possible ticks at summer camp this summer, but as these symptoms predate that (though worse now) I don't think so, and he doesn't recall any. There possibly could have been undx'ed mono when he had the pneumonia -- my 14 yr old recently tested positive for it (with zero signs/symptoms) and it made me wonder if the excessive sleepiness that predicated the pneumonia, that we thought was depression, was really maybe (also?) mono. 

We went over all of that with the doctor today, though (the excessive tiredness, his current chronic fatigue, etc.), so I know she's considering all angles as we try to get to the bottom of this. I think I said, they took 5 vials of blood and a very long list of stuff to test for, plus a UA. 

I feel really confident she'll stick with us and get us to the right answer. 

[Pen]

 

5 hours ago, TheReader said:

I'm not familiar with that movie; I'll look it up. HIs state is hard to describe, but.....yes, it's scary.  Thank you for the prayers; I appreciate them. 

 

Maybe best not now if not familiar with it.  It’s unlikely to be what he has, and was very sad iirc.

Iirc, it was based on an Oliver Sacks book about a bunch of people who as young adults had had 1918 flu with neurological after effects. 

[Ottakee]

I am glad you are on a path towards answers.  It sounds like the doctor is really good and not just a hand out meds type.

[TheReader]

1 hour ago, Ottakee said:

I am glad you are on a path towards answers.  It sounds like the doctor is really good and not just a hand out meds type.

She is; I looked up all the tests she ordered -- thyroid, autoimmune stuff, liver stuff, rheumatoid arthritis (we have history), complex metabolic panel (vs. just basic), a couple of other things I don't remember, but basically as I read about each one.....she is covering all the bases. 

I am so grateful. 

[hippiemamato3]

Any update, OP? Thinking of you guys.

[wintermom]

Thanks for the updates. Praying that you'll find some answers about what this is and how to treat it. (((hugs)))

[TheReader]

3 hours ago, hippiemamato3 said:

Any update, OP? Thinking of you guys.

Ah, yes; I was looking for this the other day and gave up. 

As of today (1/10) -- we have gotten blood work back; everything was normal.  We have been to *two* neurologists (long story, but we had both appts, so we kept them) and both agree, it is NOT neurological. All three doctors (PCP, Neuro 1, Neuro 2) agree at this point, get back to psychiatry and go from there.  The neuro used the term "psychomotor retardation" to describe his symptoms, if anyone feels like googling. 

We have an appt Feb 4th with a very carefully chosen psych; meanwhile, half of the world is trying to convince me to find something, anything, sooner. Frankly, NO. I looked at 20+ websites of doctors in our area who are in-network (we cannot do OON; $4K deductible before anything is paid, and then only 60% is covered; in network, we have only a $20 co-pay, even for this.....). From the websites, I was able to look at education, background, experience (both length of, and type of), specialties. Are they so all encompassing that they really mean "I'll see anyone! just come to me!!"?? Are they so specialized that they really mean "I am heavily pushing this xyz new "super effective" treatment, and chances are, that's what I'll suggest, and it'll probably be in the notes before you even show up..."?? Do they even see adults, and are they taking new patients??  Etc. 

From that, I narrowed down the list by over half. Called the remaining offices and asked them more specific questions. Some of those got ruled out because they can't see us/him until May/June. Some got ruled out b/c they want a deposit (larger than our copay) "In case we cancel, reschedule, are late, *don't have the forms filled out*, etc."  but then if we do show up, it goes towards our visit (well, towards 2.5 visits).  No, sorry. (I don't mind a cancellation fee, and I guess it makes sense for a new patient, but.....some of them had a LOT of things that were basis for keeping the deposit). Some got ruled out because when I would ask them if the doctor had experience with his specifics, they just guessed (literally one said, "I'm going to go with probably yes, just because she's been practicing for so long..." -- well, okay, but "probably yes" is not as good as "you know what, I'm not sure, let me go and ask her and get back to you"). 

So, all that to say....I narrowed the 20+ down to 3, 1 I haven't been able to reach yet, 1 is who we have the appt with on the 4th, and 1 is who wanted the deposit with 6 million reasons why they may keep it (and they only had one week sooner, anyway, *and* they were snippy on the phone). 

DS is doing.....okay. At home he does better than out and about; at home, he is still a slow eater, but doesn't need bite-by-bite prompting anymore. Out and about, it's much worse (and noticeable, and we just wind up bringing his food home).  He IS watching TV with us, commenting on it, etc. Still no real two-way conversations. He's gaining back the weight he has lost, slowly, as we "stuff him" (his words). His mood/thought life is good, he's safe, he's not getting any *worse*.......he's not getting *better* either. Or, not noticeably so. Better than when we got him home at finals, yes; better since the doctor visit? Not really. 

Thank you for asking; I'll try and remember to come update this after his appt next month. 

[ktgrok]

https://www.psychiatryadvisor.com/home/topics/mood-disorders/peripheral-inflammatory-markers-are-associated-with-psychomotor-retardation-in-major-depressive-disorder/

Hmm...looking at this, have you tried a round of round the clock ibuprofen? 3-4 times a day for several days? It is used for PANDAS, but in general it would indicate if inflammation of the brain was involved at all. If he improves significantly on it that would be good information to have. 

[TheReader]

21 minutes ago, Ktgrok said:

https://www.psychiatryadvisor.com/home/topics/mood-disorders/peripheral-inflammatory-markers-are-associated-with-psychomotor-retardation-in-major-depressive-disorder/

Hmm...looking at this, have you tried a round of round the clock ibuprofen? 3-4 times a day for several days? It is used for PANDAS, but in general it would indicate if inflammation of the brain was involved at all. If he improves significantly on it that would be good information to have. 

I have not; I'll give it a try. Ibuprofen is certainly an easy thing to try, just in case, and not going to hurt him if not. 

[Ottakee]

9 minutes ago, TheReader said:

I have not; I'll give it a try. Ibuprofen is certainly an easy thing to try, just in case, and not going to hurt him if not. 

I agree.  Won't hurt him and might provide some clues.

[hippiemamato3]

2 hours ago, TheReader said:

I have not; I'll give it a try. Ibuprofen is certainly an easy thing to try, just in case, and not going to hurt him if not. 

Did they check his inflammatory markers in the blood work? If so and they were normal, I wouldn't do this. Too much ibuprofen can cause ulcers.

[ktgrok]

26 minutes ago, hippiemamato3 said:

Did they check his inflammatory markers in the blood work? If so and they were normal, I wouldn't do this. Too much ibuprofen can cause ulcers.

Those markers don't always predict brain inflammation. My son had only one that was mildly elevated, but profound difference on ibuprofen. 

[TheReader]

9 hours ago, hippiemamato3 said:

Did they check his inflammatory markers in the blood work? If so and they were normal, I wouldn't do this. Too much ibuprofen can cause ulcers.

Yes,they did, and yes, they were normal. They checked basically *everything*. That's a good bit of advice; I'll talk with DH and see what he says. The study KT linked was small as well, so....?

9 hours ago, Ktgrok said:

Those markers don't always predict brain inflammation. My son had only one that was mildly elevated, but profound difference on ibuprofen. 

Hmm, thanks. I'll talk with DH and see what he says. The study was small, so.....I do appreciate having the info so we can evaluate and decide. 

At this point.....ulcers seem better than what he's dealing with, and ibuprofen seems to pose less risk than the meds they'll likely prescribe, so......it may well be worth the risk. We're thinking about it. 

[Katy]

If you want an alternative to ibuprofen (which is unlikely to cause ulcers if used for just a few weeks at over the counter strength), you can try some spices that are known to be strong anti-inflammatories. I used to make a custom mix of organic turmeric, ginger, and cinnamon that I use instead of ibuprofen.  But these days I don't often bother because they sell capsules of all 3.  The cheapest place I've found is Walmart, but most places with supplements carry them.  Even costco has turmeric.  This combination gives some people cinnamon flavored burps but is otherwise harmless and IME very effective.

Honestly I'd probably wait until there's a diagnosis before I use over the counter anything.   I can't remember if you said they ran an autoimmune panel or not, but if not I'd ask for one.  There are some autoimmune conditions that cause psychiatric symptoms, and if caught early they return to who they were before quickly with sometimes something as simple as a course of prednisone.

[Terabith]

I don't think ibuprofen for 3 or 4 days is likely to cause ulcers, and it could give you valuable information.  

[ktgrok]

1 hour ago, Terabith said:

I don't think ibuprofen for 3 or 4 days is likely to cause ulcers, and it could give you valuable information.  

This. If it is going to produce a noticeable effect it will be within a few days at most - probably within 48 hours. No more than you'd give for a head cold or whatnot. 

[Pen]

2 hours ago, Terabith said:

I don't think ibuprofen for 3 or 4 days is likely to cause ulcers, and it could give you valuable information.  

 

And if there were a response, then, knowing that, other more nutrient oriented supplements could be searched for to alleviate inflammation. 

[hippiemamato3]

12 hours ago, Terabith said:

I don't think ibuprofen for 3 or 4 days is likely to cause ulcers, and it could give you valuable information.  

I forget that ulcers aren't normal for most people. I'm sure a few days would be fine!

[sassenach]

For comparison, my 17yo was just prescribed ibuprofen 600mg, 3x a day for 10 days. I make him take it with food and I’m not worried about ulcers. 

[TheReader]

On 1/11/2020 at 12:12 PM, Katy said:

If you want an alternative to ibuprofen (which is unlikely to cause ulcers if used for just a few weeks at over the counter strength), you can try some spices that are known to be strong anti-inflammatories. I used to make a custom mix of organic turmeric, ginger, and cinnamon that I use instead of ibuprofen.  But these days I don't often bother because they sell capsules of all 3.  The cheapest place I've found is Walmart, but most places with supplements carry them.  Even costco has turmeric.  This combination gives some people cinnamon flavored burps but is otherwise harmless and IME very effective.

Honestly I'd probably wait until there's a diagnosis before I use over the counter anything.   I can't remember if you said they ran an autoimmune panel or not, but if not I'd ask for one.  There are some autoimmune conditions that cause psychiatric symptoms, and if caught early they return to who they were before quickly with sometimes something as simple as a course of prednisone.

Really, a few days of ibuprofen doesn't bother me too much; getting DS on board, I don't know. He doesn't love taking anything, so, we'll see.  I'll suggest to him the other stuff and see. 

They DID do an autoimmune panel, everything was normal, no indications of anything. Pretty much, if you can test the blood for it, they did, and everything was completely normal. No indication of anything, at all, in any of his blood work (and an extensive amount was done). 

[Terabith]

Was wondering if there was an update?  Thought your appointment had been this week or so.  

[TheReader]

2 hours ago, Terabith said:

Was wondering if there was an update?  Thought your appointment had been this week or so.  

yes; sorry, it's been an emotional week. 

He will begin inpatient services tomorrow; dx is major depression with psychomotor retardation. 

[Terabith]

I hope it goes well.  

[school17777]

24 minutes ago, TheReader said:

yes; sorry, it's been an emotional week. 

He will begin inpatient services tomorrow; dx is major depression with psychomotor retardation. 

I’m sorry.  I hope you feel some relief and are able to rest while your ds is being looked after and hopefully treated.

I hope the treatment is effective for your ds.

(((Hugs)))

[Terabith]

Did you all like and trust the doctor who suggested this?

[Terabith]

I’ve been inpatient on psych ward for depression a few times, if any of you have questions.  

[klmama]

Praying this inpatient stay will help your ds.  ((Hugs))

[TheReader]

7 hours ago, Terabith said:

Did you all like and trust the doctor who suggested this?

All the doctors so far have hinted at it, from our PCP who first gave me paperwork on the facility "in case things get much worse" (things are odd; at home, he's better; in public, he's much worse).  

We did/do like and trust the doctor who suggested it, and agree that a short term stay is needed. 

[TheReader]

8 hours ago, Terabith said:

I’ve been inpatient on psych ward for depression a few times, if any of you have questions.  

thank you; I may have questions later. Right now we feel I guess as well prepared as one can for this sort of thing. 

[scholastica]

I’m sorry that your family is going through this, but I am so impressed by your perseverance with this issue. Your son has good parents.

[hippiemamato3]

It sounds like he's in the right place to get the help he needs. Please keep us updated as he feels better!

[TheReader]

Well the first night was very, very rough. We spent 5 hrs in the assessment/admission process, during which he was quiet, but fine. Then we had to leave. But we were allowed to come for visitation, which is not always allowed in the 1st 24 hrs, but they said it was okay, so we did. And by that point (only 2 hrs later) he was so scared and nervous about being there. I know that's normal, but leaving him and not scooping him up and taking him home was probably the hardest thing I've ever had to do. 

Praying we all get through today and that by tonight's visitation he's doing a little better.

[school17777]

Praying that today is better.

[mmasc]

Saying a prayer right now for your ds, and you. I can only imagine how much this hurts your mama heart. 

[scholastica]

Praying for you and your family.

[hippiemamato3]

On 1/26/2020 at 8:04 AM, TheReader said:

Well the first night was very, very rough. We spent 5 hrs in the assessment/admission process, during which he was quiet, but fine. Then we had to leave. But we were allowed to come for visitation, which is not always allowed in the 1st 24 hrs, but they said it was okay, so we did. And by that point (only 2 hrs later) he was so scared and nervous about being there. I know that's normal, but leaving him and not scooping him up and taking him home was probably the hardest thing I've ever had to do. 

Praying we all get through today and that by tonight's visitation he's doing a little better.

I hope you all have found some peace and that he has settled in ok. The first couple of days are the hardest for everyone.

[TheReader]

Just now, hippiemamato3 said:

I hope you all have found some peace and that he has settled in ok. The first couple of days are the hardest for everyone.

Thank you; he was doing a bit better last night. It's still very hard for DH in particular, and I don't think our other boys realize the extent of it -- we have not let them visit him yet; we may let the 14 yr old visit tonight, depending how DS is doing when we go. Only 2 of us can visit at a time, and the whole visitation is only an hour, and to swap out, we have to both walk back out, trade off, walk back in (escorted, so it takes a few minutes), so during the swap, ds would have to be alone in the visiting room (large group room). We'll leave it up to him if he wants to do that or not. 

 

[hippiemamato3]

1 minute ago, TheReader said:

Thank you; he was doing a bit better last night. It's still very hard for DH in particular, and I don't think our other boys realize the extent of it -- we have not let them visit him yet; we may let the 14 yr old visit tonight, depending how DS is doing when we go. Only 2 of us can visit at a time, and the whole visitation is only an hour, and to swap out, we have to both walk back out, trade off, walk back in (escorted, so it takes a few minutes), so during the swap, ds would have to be alone in the visiting room (large group room). We'll leave it up to him if he wants to do that or not. 

 

Have they decided on a treatment plan? Once you know that it will become easier to handle I think. I might wait until your older son asks for younger son to visit unless they are very close....

[TheReader]

16 minutes ago, hippiemamato3 said:

Have they decided on a treatment plan? Once you know that it will become easier to handle I think. I might wait until your older son asks for younger son to visit unless they are very close....

Right now he's on 3 meds, and the doctor is weighing whether to also/instead do a procedure we don't really want to do. Now, that was info we got last night, based on yesterday's morning visit with the doctor. We are hopeful that the doctor sees the same improvement this morning that we saw last night and decides the meds are enough (and also maybe tweak them some).

We talked with our oldest last night, and yes, that's our plan -- that youngest will be in the waiting room (we are more comfortable with that than leaving him home alone at that time of night), and if he's doing well, we'll ask, and if he wants to see him, we'll swap out. The boys are all very close (our middle son is on campus at college, locally, so wouldn't be able to visit until Thursday when he's home, if oldest wants him to). 

We won't meet with his assigned therapist I think until the weekend "family education" visits, so the way it works, DS sees the psychiatrist each morning. Then group therapy, one-on-one therapy, etc. throughout the day. In the afternoon, we can call the nurse/therapist for an update on how he did that day, and leave a message for the doctor to call us. The doctor calls back in the afternoon/evening, sometime between then and when we can go for visitation. We go see him at 7:45 pm each night (the scheduled visitation hour). So, the info from the nurse is up to date up to that time of day; the info from the doctor is based on earlier that morning; then we see him that night. 

I'm reading up on the proposed procedure, hoping that the doctor changes his mind, because DH is flat out NO WAY about it and I really don't relish having to try and change his mind, and I'm not sure where I stand. I'm reading up on it to see. 

[Pen]

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

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

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

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

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

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