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Friend's 12 year old son is dying. Doctors can't figure it out. Calling Dr. House! (or FBG doctors) Edited for update on 10-28-19 (1 Viewer)

Hagger

Hagger

Footballguy
Here's the details I know, my friend's son has had a severe illness going on for close to a year now.  Here's everything I know:  The son is 12 years old, Caucasian, medium height, weight (around 100 lbs), and build.  A year a go his family took a trip to Hawaii.  Within about two weeks of returning, the son began feeling lower abdominal pains.  As the pain became more severe, they took him into the doctor, who tried him on some different anti-parasite meds, and antibacterials.  None of that worked.  The pain he was feeling has become so severe that he will now pass out, and even have seizures.  The doctors have ruled out the following things: parasites, celiac, appendix problems, he's been given multiple CT scans and ultrasounds, bloodwork revealed slightly higher than normal white cell counts, but nothing telling.  They have discovered he does have many allergies to a variety of things (I don't know them all), but when they'd change his diet and take him off of those foods, the symptoms didn't go away.  They've now resorted to homeopathic doctors and acupuncture because no one can figure out what's wrong.  Meanwhile, his symptoms are worsening.  Now his entire body is sensitive to pain, if he gets touched too hard it nearly makes him pass out.  Also, his toenails have all fallen out and his fingernails are now too.  He's getting progressively worst.  The pain has become debilitating and he can barely get out of bed and has now missed most of the school year.  His parents are frightened and panicking, and no one seems to be able to diagnose him.

Any doctors on board that can look at that and get any ideas on what it might be, or at least who they should see next?

Update on 10-28-19:

I know several of you have monitored this topic and others have waited to hear what has come of this.  I haven't seen my friend in a while, but caught up with him today.  His son who has been extremely ill has finally had a diagnosis and treatments that seem to be working miracles.  Although I don't know the correct medical term, he was diagnosed with a condition similar to Phantom Nerve Pain.  His body was feeling pain and reacting to some sort of neurological disorder.  The treatment has involved having him stand in front of mirrors and do a variety of different exercises and strange routines to I guess sort of recondition his mind.  I have no idea how exactly this works, but it is working.  His son has been improving over the last 9 months and is now symptom free.  He has missed most of the last three years of school and has had to be home schooled as best as possible, but is finally back and trying to adjust to making friends again.  So, it really doesn't make any sense to me, but that's what has finally come of it and all is going great.  Thanks to all of you who have offered your thoughts over the years.

 
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The parents are baffled, and they feel like they're just getting passed along from one specialist to the next, and the doctors test for a couple of things and then just wash their hands of it.  Could Lyme disease do this?  I know Lyme disease can be tricky to diagnose.

 
Was thinking Lyme, but I would assume they have tested for it multiple times at this point.  Or some kind of autoimmune issue, or something viral that went after his central nervous system.  Ugly.  I sympathize - having a problem that they can't diagnose is maddening.  I my case a family member had "atypical shingles" - basically shingles without the rash.  Never seen someone in so much apparently warrantless pain.

 
Baloney Sandwich said:
I was thinking Children's Hospital in Boston but definitely they should get the kid to one of the top hospitals in the country (if they haven't already).
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I'd be doing research and getting opinions like crazy.  There are a handful of elite hospitals geared towards kids who'd likely have seen something similar. 

 
I second the the thought of getting him to a big time hospital. My wife was taken to Cleveland Clinic 15 years ago for a heart problem our little country hospital could not handle. Clinic had her diagnosed and prepared for surgery within a day. An amazing place!

 
My daughter was severely ill several years ago.  I live in NY and she was vomiting and ill for nearly a month before we took her to Cohen's children's hospital.  She was there for 17 days and underwent every test they had and they could not figure out what was wrong with her.  We were sent to CHOP, the Children's Hospital of Philadelphia.  It saved her life.  That place is real life HOUSE.  I mean it.  Do the research and urge the family to take them there,  When we couldn't get in to the Ronald McDonald house, they helped set us up in a hotel near the hospital at a very minimal cost.  They really were amazing and diagnosed here within 48 hours.  It truly was amazing and one of the top rated children's hospital in the Country.  Good luck.

 
Uggh--My thoughts and prayers to your friends son and his entire family.  The fingernails and toenails falling out could indicate some sort of fungus based condition.   I haven't been to Hawaii for like over 15 years--but I'm wondering if a kid his age could have maybe eaten some sort of tropical mushroom while in Hawaii?     I know it's a longshot-- but maybe some form of Kawasaki disease?   

 
James Daulton said:
What part of the country?  I'd get the kid to a specialty hospital like Cleveland Clinic or Hopkins.  I wouldn't mess around with the local docs if they keep coming up empty. 
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They live in the Salt Lake City area, but I'm still wondering if it's related to their trip to Hawaii.  They've been to Primary Children's Hospital in Salt Lake several times.  My friend (the father) is pretty well off, so flying somewhere to go to a specialist wouldn't be a problem.

 
Silver & Black said:
My daughter was severely ill several years ago.  I live in NY and she was vomiting and ill for nearly a month before we took her to Cohen's children's hospital.  She was there for 17 days and underwent every test they had and they could not figure out what was wrong with her.  We were sent to CHOP, the Children's Hospital of Philadelphia.  It saved her life.  That place is real life HOUSE.  I mean it.  Do the research and urge the family to take them there,  When we couldn't get in to the Ronald McDonald house, they helped set us up in a hotel near the hospital at a very minimal cost.  They really were amazing and diagnosed here within 48 hours.  It truly was amazing and one of the top rated children's hospital in the Country.  Good luck.
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So what did she have? 

 
Bucky86 said:
Based on your post count, I'm going to assume you're newish? 

There are always a ton of shtick threads created and you're asking people, most of whom are not doctors, to diagnose based on third-hand information. Don't be angry when people are hesitant to take it seriously.

Good luck!
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Actually I've been around a long time.  But I only hang around during football season, and mostly just lurk, at that.  I get what you're saying, but there's actually a pretty diverse group of different professionals on this board, and it's an active board where I knew people would respond fairly fast.  I've searched the internet like crazy looking for matching symptoms, but nothing really fits.  Is it really so weird to try and field some different ideas?  You never know when someone will have had a relative or friend with the same symptoms and be able to suggest something.

 
Ketamine Dreams said:
Ok. I am an actual MD btw. And both of those make a lot of sense to be completely honest with you. Does he get better when he's not with his parents? 
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I don't spend time with the kid when he's not with his parents, but to my best knowledge he never gets better.  It's chronic, and progressively getting worse.  And where the pain started only as lower abdominal pain, it doesn't really seem to match CRPS.

 
Hagger said:
I don't spend time with the kid when he's not with his parents, but to my best knowledge he never gets better.  It's chronic, and progressively getting worse.  And where the pain started only as lower abdominal pain, it doesn't really seem to match CRPS.
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Gotcha. CRPS can start after a seemingly minor injury. I was thinking more lower extremity, so if it's mainly abdominal then that doesn't make too much sense. The strange hypersensitive  reaction to pain and problems with skin and nails are very common with CRPS

 
joffer said:
some kind of toxin/poison that's difficult to detect?  May have come in contact with it in Hawaii.
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This is kinda what I was thinking when I mentioned possible exposure to wild mushrooms.  Hawaii is a beautiful place--but it is also filled with hazardous plants and animals. Unfortunately--many of these plants are beautiful and unassuming--so I could totally see a young kid not understanding how dangerous they could be.  Here are just a couple links to some examples:

http://kauaiseascapesnursery.com/watch-out-poisonous-plants-of-hawaii-identification-guide/

http://wildlifeofhawaii.com/flowers/category/poisonous-hawaiian-plants/

 
Props to you for helping out as a friend.  A few random thoughts in case any of them are helpful:

Getting him to the best hospital possible, wherever that is, sounds like the best first move.

Reddit is a great idea - the breadth of audience there is amazing.  There's almost certainly already some subreddits that deal with helping diagnose unusual symptoms.

Not trying to find a match for the symptoms necessarily, try googling weird diseases and how they were diagnosed... every now and then I'll read a story about someone that had strange symptoms and it took them a long time to finally get it diagnosed.  Maybe reading one of those cases will give some more ideas on a way to get help, or provide something unexpected to consider.

Maybe try to find a Hawaiian doctor/resource to help out?... they might be more familiar with something local that causes some of those symptoms.  Maybe focussing on a few of the symptoms will help lead to an answer if the son turns out to have an unusual combo of symptoms that are complicating being able to zero in on the primary symptom(s).

Ask the family write down everything they remember doing while they were in Hawaii, maybe that will help jog their memory (or give a doctor a clue) of something they did which could provide an area of focus.  E.g. did he go swimming in a pond?... walking in an area where there might have been insecticides, pesticides, mushroom spores, ???

If you can, please keep this updated when there's news, I really feel for the kid and his family.

 
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Silver & Black said:
My daughter was severely ill several years ago.  I live in NY and she was vomiting and ill for nearly a month before we took her to Cohen's children's hospital.  She was there for 17 days and underwent every test they had and they could not figure out what was wrong with her.  We were sent to CHOP, the Children's Hospital of Philadelphia.  It saved her life.  That place is real life HOUSE.  I mean it.  Do the research and urge the family to take them there,  When we couldn't get in to the Ronald McDonald house, they helped set us up in a hotel near the hospital at a very minimal cost.  They really were amazing and diagnosed here within 48 hours.  It truly was amazing and one of the top rated children's hospital in the Country.  Good luck.
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I can vouch that CHOP is fantastic. My daughter was diagnosed there in about an hour after seeing numerous specialists for head and back pain. Luckily it wasn't a serious condition; it was a condition that breeded on stress. And what caused the most stress was not knowing what the problem was. Anyways, CHOP is great.   

 
Agree with the people that recommended Reddit coupled with a trip to a more advanced hospital, like Boston Children's or some other place that quite literally performs modern miracles with these sorts of situations.

 
For those mocking the guy asking FBG for thoughts on a serious medical issue, if it was my kid I would seek any and all opinions to get to the bottom of it. The biggest mistake a family member with a sick relative can make is trusting too much in the medical profession that they have the answers. If you ever have someone very sick, one of the keys in my opinion is that there is a strong advocate for the sick person that isn't afraid to question doctors and at times demand more from them.

I think most doctors are great but they are human as well.  Often times to get the best results you need to challenge them.

 
Baloney Sandwich said:
For those mocking the guy asking FBG for thoughts on a serious medical issue, if it was my kid I would seek any and all opinions to get to the bottom of it. The biggest mistake a family member with a sick relative can make is trusting too much in the medical profession that they have the answers. If you ever have someone very sick, one of the keys in my opinion is that there is a strong advocate for the sick person that isn't afraid to question doctors and at times demand more from them.

I think most doctors are great but they are human as well.  Often times to get the best results you need to challenge them.
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Could not agree more. With a life threatening illness you need to reach out, everywhere. You just never know if someone knows something that happens to be great info. Like who ever thought that Claritin eliminates bone pain that the Neulasta shot creates. Take one day of and for the following 3 days and nada. I've educated my docs a time or two by doing my own research as well as putting out questions. They don't have the time and while we think they specialise in a certain area, they don't always know everything and the latest in their field.

 
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