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Anyone have a kid with mono?

Brisketexan

By Brisketexan
in Can You Help Me With This?

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Brisketexan

Brisketexan 105340

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The boy (16) has been incredibly fatigued for two months.  Like, well beyond ordinary sleepy teenager.  It impaired his ability to function, perform at school, etc.  It all blew up about 10 days ago, when we got a school progress report that was...not good.  He broke down, told us that he just couldn't shake being constantly exhausted, which left him feeling overwhelmed, which spiraled into depression.  Like, serious enough for us to be very concerned for his well-being.  We went in to our family counselor, who almost immediately said that the boy did not look well (it had been three months since they'd last seen each other).  He suggested that we get him to the Dr. and specifically have him tested for mono.  We already had a Dr. appointment scheduled for bloodwork etc., and added mono to the list.

Well, they called us two days later to tell us yep, he'd had mono.  Not currently infected, but had the markers for a recent infection.  Which all ties back to an inexplicable and lengthy sore throat he had in late August, and then a decline in energy that really kicked in mid-late September...and has been ongoing.  So, of course we're kicking ourselves for not looking at an underlying physical ailment when he went downhill, but now at least we know.

He's still very fatigued -- like, he needs 13+ hours of sleep a night, if he can get it.  He has experienced a peak in frequency of migraines -- like one per week.  And it has impacted his school attendance and performance.  We're meeting with the counselor tomorrow morning (we're grateful that he's in a private school now), so we think we can help him salvage the semester, maybe even take some incompletes and finish things out after the Xmas break.

But my question is -- what are your experiences with kids with mono?  How long can they be impaired by it?  What should we expect?  I'm sure it varies, I'm just looking for some other experiences to help us understand.

By the way, this whole experience sucks like hell.  He's 16, and shitty at regulating his physical and mental health, so to have something like this hit him has REALLY thrown him for a loop.  I just want my kid to be okay, physically and mentally.

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gsoda3

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sorry to hear brisket.  i'm glad you guys found the underlying cause and that it was physical and not psychological.  

 

our 7 year old has had it three times.  each time we caught it after a week of him showing symptoms usually not associated with flu/colds (not able to walk, listless,  change in bahavior, etc).  for him though it only took a couple days after the antibiotics started to get over it.  does mono manifest differently in younger children?  

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Brisketexan

Brisketexan 105340

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8 minutes ago, Patricio Swayze said:

I got it when I was 17. Ended up in the hospital for 3 days. It sucked. That’s all I got.

Are you sure he isn’t fatigued from chronic masturbation?

I got it when I was 18, wiped me out for a couple of weeks (and come to think of it, it was right before first semester of sophomore year, my worst academic semester ever.....huh, interesting.  Of course, I was also drinking 6 days a week and chasing girls all the time...that surely didn't help).  But we have friends who actually had to be hospitalized and take an incomplete on a semester of college, and others who barely muddled through a semester, using Xmas break to recover.  So, it seems to vary.

And chronic masturbation didn't wear ME out back in the day, so I suspect that's not his problem.

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Js1

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Yeah I had it for like 2 months when I was 17. Just fucking exhausted. Thankfully (but also sucked) that it was during summer.  And I do rarely got/get sick that it was a nightmare. Just sleeping all day and barely able to eat Bc of the sore throat. 

And I got it being in close proximity to the school skank who obviously was A carrier of every known disease. (No we didn’t make out, I was a horny gay teen no y but not horny enough for that) 

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Sbbruin

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22 hours ago, Brisketexan said:

And chronic masturbation didn't wear ME out back in the day, so I suspect that's not his problem.

Did you have access to porn of any and all types at your fingertips 24/7?  Shit, I'd probably have rubbed it clean off if I was 16 today.  Fortunately at my advanced age, I exhibit more self-control.

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Brisketexan

Brisketexan 105340

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Congrats(?) on your 16 year old having game.
Don't assume the migraines are related to the mono.

Yeah, he had migraines before (family history from both sides), but we’ve seen a spike the past 6-8 weeks.

He’s still completely exhausted. School told him to stay home this week, and we’re trying to figure out an academic path forward.
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ShaggyBevo RIP

ShaggyBevo RIP 3868

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1 hour ago, Brisketexan said:


Yeah, he had migraines before (family history from both sides), but we’ve seen a spike the past 6-8 weeks.

He’s still completely exhausted. School told him to stay home this week, and we’re trying to figure out an academic path forward.

Have you tried a food elimination diet to see if they are diet triggered? My wife had migraines for 20 years until a doctor had her do a food elimination diet.  She discovered wheat was her trigger. She eliminated wheat from her diet and hasn't had a migraine in close to 15 years.

Basically, take your diet to chicken, rice, oatmeal, veggies, fruit(minus citrus), and fish(but no shellfish) for 10 days and then add in one item per day and see if it triggers anything.

Edited by ShaggyBevo RIP
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Brisketexan

Brisketexan 105340

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3 minutes ago, ShaggyBevo RIP said:

Have you tried a food elimination diet to see if they are diet triggered? My wife had migraines for 20 years until a doctor had her do a food elimination diet.  She discovered wheat was her trigger. She eliminated wheat from her diet and hasn't had a migraine in close to 15 years.

We'll be working on that.  He's got a neurologist appointment, and he also works on that.  My wife has been through the process -- some foods and drinks are triggers (e.g., red wines), so if she ingests those, she gets a migraine.  But she still gets them, just with less frequency than if she was drinking wine all the time.

So, the migraines as a whole are a work in progress.  The acute spike in frequency...we're THINKING it's connected to the mono, but shit, nobody can be sure.  About the only thing we can say with confidence is that he has real-deal brutal fatigue/exhaustion, still.

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ShaggyBevo RIP

ShaggyBevo RIP 3868

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^^^
We drink European, South American, and Napa estate grown only as we are both sensitive to sulfites. Other areas liberally apply sulfur to keep grapes from getting mold. Don't assume Napa wines are using Napa grown grapes. Make sure they are Napa estate grown as they truck in San Joaquin Valley grapes at night when tourists' eyes are shut.

Thinking about trying one of the new sulfite wine filters to see how we react to wines we know we react to once filtered.  https://ullowine.com

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Uncle Nate

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There's a good chance that the mono has caused some dehydration and seriously depleted his electrolytes, potassium, and other vitamin levels over time.  The potassium levels alone could be working against him.  I would get some electrolyte replacement drinks going (vitamin water zero, pedialyte, MiO flavor enhancer that specifically has electrolytes, etc.) and also get him taking some Vitamin D, C, B12, & A supplements with meals. Also, get him to eat more foods with higher potassium contents (don't do supplements, because you don't want to do too much potassium...just try and get it through nutrition alone).

Here's a list of high potassium, nutritious foods:  https://www.webmd.com/diet/foods-rich-in-potassium#1

 

 

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Brisketexan

Brisketexan 105340

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There's a good chance that the mono has caused some dehydration and seriously depleted his electrolytes, potassium, and other vitamin levels over time.  The potassium levels alone could be working against him.  I would get some electrolyte replacement drinks going (vitamin water zero, pedialyte, MiO flavor enhancer that specifically has electrolytes, etc.) and also get him taking some Vitamin D, C, B12, & A supplements with meals. Also, get him to eat more foods with higher potassium contents (don't do supplements, because you don't want to do too much potassium...just try and get it through nutrition alone).
Here's a list of high potassium, nutritious foods:  https://www.webmd.com/diet/foods-rich-in-potassium#1
 
 

Interesting. He’s been craving OJ for about 6 weeks. Seriously, not something we usually keep on hand, and he’s been pounding it.
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Not that Bob

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There's some symptomatic migraine relief with Botox injections.  Not cure, but symptom relief.  Neuro exam is a good idea. 

It seems like a "tragedy" now, but taking time off from school, delaying graduation or graduation plan changes may be beneficial in the larger plan. He is probably not able to learn well with the present fatigue so, in addition to the stress, he may not catch some things he will need later in his academic life. 

Take some irons out of the fire...let the game slow down. 

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Brisketexan

Brisketexan 105340

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There's some symptomatic migraine relief with Botox injections.  Not cure, but symptom relief.  Neuro exam is a good idea. 
It seems like a "tragedy" now, but taking time off from school, delaying graduation or graduation plan changes may be beneficial in the larger plan. He is probably not able to learn well with the present fatigue so, in addition to the stress, he may not catch some things he will need later in his academic life. 
Take some irons out of the fire...let the game slow down. 

Yeah...this really seems like the plan. Really, it all came to a head when his academic performance just plummeted. And when confronted about it, he just broke. He had been feeling overwhelmed, was falling way behind...and it mostly tied back to him being exhausted. He couldnt stay awake or focus in school, and when he came home, he’d nap for 3-5 hours instead of homework. Which led to anxiety, depression, and despair. Really, we just need to focus on getting healthy in body and mind. Everything else will follow.

We’re grateful that we moved to a private school this year - they know this drill, and they have a flexibility that our massive public high school doesn’t have. We’ll get it worked out. Patience is going to be tough, and keeping his state of mind right is going to require some real time and work together.

This really just caught us all flat-footed, and because we didn’t realize it early, it has led to a lot of complicated repercussions that we’ll just have to unwind over time.
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Brisketexan

Brisketexan 105340

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Update and frustration, so I’m kinda just venting.
He has been showing signs of getting better, but it’s a LOT of 2 steps forward, 1 step back. The exhaustion isn’t gone, but it’s a good bit better. Many days, he can function all day. He’s REALLY tired at the end of the week, but he can actually go all day sometimes.
Migraine frequency is nuts. He missed all or part of two days last week, as he had three migraines in that period.
And yesterday, baseball started. He had a good practice, and was SO happy. But...he was wiped. Ate dinner, in bed by 8, and this morning, he was exhausted and sore so he isn’t going to school till lunchtime, for a half day.
Will he be able to play baseball, which makes him SO happy, and inspired him? I don’t know.
Will be even be able to complete this academic year, or will we have to repeat it (a concept that, when we floated it a couple of weeks ago, elicited a VERY negative reaction from him)? I don’t know.
We’re working with a team of drs, but they h ent been much help yet. We changed pediatrician, so he’s still getting up to speed. We are getting a full comparative blood panel this week. And he sees a neurologist next week, hoping for some migraine relief. Also working with a sports nutritionist doc, who has a supplement regimen for him that he thinks will start helping in another week or so.
I’m just damned frustrated, I’m sad for my kid, I’m worried about him and his state of mind, and fucking goddamit. So, there’s that.

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HouTex

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We went through this with our freshman at UT in 2010-11. It was tough but she got through it with no apparent long lasting effects. Not that this is the cause of your kid’s mono, but IMO we have our kids doing too many activities and they can get run down and some of them come down with mono or other maladies. They need more down time. In our case, she dropped some activities at UT, got plenty of rest, and she got over it.

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CDAK

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I had mono for an entire semester in college.  Fall semester junior year.  It caused my liver to inflame so I couldn't drink.  That killed my social life.  I was tired, had recurring fever, and terrible night sweats but did wonderful academically that semester because my social life was non-existent.  

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kmac30

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Are you sure the headaches are just migraines? I used to get cluster headaches. They would last for 2-3 weeks. I had my first around 18 or 19. Drs weren’t much help (probably my fault). Ended up on a steroid pack and that seemed to work. Got them again in college and went straight to dr for steroid pack that worked quick. In my 20s they came more often (almost annually). I went to acupuncture and that seemed to work better than steroids. From 29 to almost 35 I only had them twice. At 38 I had a really bad episode. Back to acupuncture. Unfortunately it was a different place because I had moved. Not as successful. Not sure why. They lingered for almost a month. That was the last episode as of yet, I’m almost 42. Jan-March used to be the most active times, so I always get a little nervous this time of year.

Headaches start anytime during the day, but mine were usually late morning/around noon. Last anywhere from 15 minutes to a few hours. Sometimes so bad they would almost knock me out of a chair. Most of the time just a constant drilling pain.

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ShaggyBevo RIP

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One of our kids had a chronic illness that made getting her through the last  year of high school practically a full time job.  One of the best things one of the counselors/doctors told us was, "You have to meet her where she is at and not let your expectations and frustrations cloud what is the reality is.'

She is now taking a full course load in college and keeping a high GPA.

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RDCanecutter

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Man, that seems like a long time to de run down by mono. When I had it, seems like I was wiped out for a couple of weeks, could barely open a window, and had visions. Maybe my ass was run down for longer, and I just thought that was normal.

Kid ever had a CT scan? Not tryin to scare you, but after one episode of extreme fatigue a couple years ago, a CT scan turned up some bits that were trying to go Free Agent, and got extracted and sent packing.

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bluto

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Never had an outright bout with mono until I was in my mid 20s. Not sure if that was the first infection I had or if the Epstein Barr fired back up. Anyhow, in my busy seasons that are crazy stress/hours I have to be mindful of it as it has flared up a few times where I test positive for mono/EBV gets activated... or some shit like that.

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Brisketexan

Brisketexan 105340

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So, this motherfucking disease just keeps on giving.

The boy's primary symptom was chronic fatigue, which led to depression.

Over the spring and summer, he showed real improvement.  He still preferred slightly more sleep than a teenage boy would, but it wasn't extraordinary.  Well, during online school this fall as things went on, he was napping during free periods (and not doing work then), so his school was taking a hit.  So, we sent him back to in-person school.  It has helped with his grades....but has been a disaster for his well-being.  He has experienced a significant decline over the past 6-8 weeks or so.

To the point where he is incredibly exhausted again -- he can easily sleep 13-14 hours on a weekend, when he can.  And he his having frequent migraines.  We have changed doctors and got some comprehensive bloodwork done, and it shows two problematic things: 1) a high load of Epstein Barr virus (not contagious, but still wrecking his system), and 2) malnutrition.  Yep, malnutrition.  Why, you ask?  He has a very high metabolism....and he's sleeping so much that he isn't consuming enough food/calories/nutrients.

So, we've got him on an antiviral drug.  We also have him on some heavy-duty nutritional supplements.  And we're fighting like hell to make sure he gets good food, and a lot of it.  And we decided yesterday to take him back to online school.  He was going to go to his last day of in-person school today, but.....migraine, and a bad one.

He's really fucking depressed.  He's a year into this, and hardcore chronic fatigue came back.  The migraines have come back.  It's not back to square one -- even he says it's not as bad as when he was truly sick the first go round -- but it's a setback.  And he's wondering whether he'll have debilitating chronic fatigue his whole life.  I did some basic homework, and among adolescents, a study showed chronic fatigue at a rate of 13% at 6 months, 7% at one year (where we are now) and 4% at 2 years.  His job, and our job, at this point is rebuilding his body and his system.  Knocking back the virus, and strengthening his body and system to keep it knocked back, and to have more energy.

But goddamit, this is so frustrating and heartbreaking.  I have a good kid.....with what is turning out to be a chronic illness, and it's absolutely shitting on his quality of life.  He will never have anything like a normal high school experience (mono and covid is a real winning combination for that).  He's definitely not going to college the year after he graduates - a gap year is absolutely the plan.  But still, will he be able to function?  Will he be able to live and work normal hours?  None of us know, and we're all a bit scared (although the parentals are trying not to show it).  Fuck this shit.

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RDCanecutter

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Man. He might just come around. When I was a teen I looked like a Japanese Prison Camp Survivor, and would almost faint going up stairs. I'm talking 120 pounds at 6' 3". Just didn't care about food, and my metabolism must have been on fire. Finally just aged out of it and am all ruddy and almost double the weight. But even into college, I think I weighed 150 soaking wet.

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DonkeyCigars

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10 hours ago, RDCanecutter said:

Man. He might just come around. When I was a teen I looked like a Japanese Prison Camp Survivor, and would almost faint going up stairs. I'm talking 120 pounds at 6' 3". Just didn't care about food, and my metabolism must have been on fire. Finally just aged out of it and am all ruddy and almost double the weight. But even into college, I think I weighed 150 soaking wet.

You didn't have chronic fatigue, depression, migraines and maybe a mono virus that never went way.

You smoked pot and watched The Wall on VHS in a bean bag on a loop so much it disoriented you on if you were awake or asleep and if you've eaten in the last 12 hours or 12 minutes.

Edited by DonkeyCigars
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HeHateMe

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Brisket... I will pm you my number.  Call if you’d like, but my girlfriend had mono 5 years ago and developed chronic fatigue.  She was the yoga twice a day type or hike camelback mountain and workout after.  She hasn’t been able to do any of that since.  It is breaking her soul.  She was blown off by countless physicians, basically because very few of them can even begin to comprehend this disease. I have spoken to a few specialists and she is seeing one on the Monday before thanksgiving.  I’m hopeful because she is finally seeing someone who understands what she is going through and has dedicated their career to helping these patients.  I hope your sons case is different and that he bounces back, but if you’d like to reach out...I’m happy to discuss and let you know about the upcoming experience with the specialist.

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Brisketexan

Brisketexan 105340

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Brisket... I will pm you my number.  Call if you’d like, but my girlfriend had mono 5 years ago and developed chronic fatigue.  She was the yoga twice a day type or hike camelback mountain and workout after.  She hasn’t been able to do any of that since.  It is breaking her soul.  She was blown off by countless physicians, basically because very few of them can even begin to comprehend this disease. I have spoken to a few specialists and she is seeing one on the Monday before thanksgiving.  I’m hopeful because she is finally seeing someone who understands what she is going through and has dedicated their career to helping these patients.  I hope your sons case is different and that he bounces back, but if you’d like to reach out...I’m happy to discuss and let you know about the upcoming experience with the specialist.

Well....fuck...that’s horrifying. I’m sorry to hear about that. And I sure as shit hope the boy gets a different path. But yeah, we’ve worked to find a dr who gets it - we’re hopeful about the new one.
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DonkeyCigars

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1 hour ago, Brisketexan said:


Well....fuck...that’s horrifying. I’m sorry to hear about that. And I sure as shit hope the boy gets a different path. But yeah, we’ve worked to find a dr who gets it - we’re hopeful about the new one.

Knew someone who went through this too, what HeHateMe described. I'm hesitant to even share this, because it's been idiopathic and causation does not equal correlation and all of that, but chronic mono/fatigue also in my experience leads to autoimmune issues where previously there were none. I think your kid is probably too young to feel the effects of, like, Rheumatoid Arthritis, but just keep that in mind as I'm no doctor and don't know what the menu of autoimmune conditions could even be.

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immamac

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The only time I've ever felt that way is when I was getting treatment for my graves disease (hyperthyroidism) and ended up way on the other end of the spectrum (hypothyroidism). I was constantly completely exhausted. No amount of sleep would help me not be exhausted. When I finally got my thyroid panel the doctor sitting across from me asked how I was even in her office and out of bed because I essentially had no thyroid hormone at all. 

Maybe worth a shot to see if the thyroid went wonky? 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5099387/

Looks like there is actually some research linking EBV to thyroid autoimmune deficiencies (similar to Graves). It took fucking forever for them to diagnose me.

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immamac

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10 minutes ago, Brisketexan said:

He got some comprehensive bloodwork -- I'll see if thyroid function was a part.  If not, we go back to the doc in a couple of weeks, will raise it then.

Thanks for the input, even the scary input.

Well if it's a thyroid thing the good news is it's really easily fixable. It's actually kind of amazing how a fucked up a thyroid can take you down and how fast it fixes with the appropriate levels.

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RDCanecutter

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11 hours ago, DonkeyCigars said:

You didn't have chronic fatigue, depression, migraines and maybe a mono virus that never went way.

You smoked pot but it was 70s dirtweed with no effect, and listened to The Wall on the hippy radio station at a drawing board on a loop because Gramama put plants on top of the TV and then watered them there so much it disoriented you on if you were awake or asleep and if you've eaten in the last 12 hours or 12 minutes.

Also, you wanked to the point of insanity.

Still, you were close enough for horse shoes or handgrenades.

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