My 13 Year Old Son Has Been in the Hospital for 25 Days...

Is he at a children's hospital? If not, can they consult with one? Maybe something will trigger a thought with a specialist pediatrician.

Pain in the upper GI and lots of bile says gallbladder or liver to me. Have they done a CT of that area?

ETA: Have they looked for volvulus (twisted bowel)? That may be it. The symptoms seem to match up.

Things often piggyback.

It's called a 'Secondary or Tertiary Infection' in illness terms (like pneumonia that develops from a cold. Started out with a cold, and it progressed onto pneumonia.

The last time we were in the hospital for 5 weeks, my sons appendix ruptured. No biggie... That was done in 3 days. But the stress of tithe surgery triggered my sons lungs to go on strike. (Pneumonia, pleural effusions, atelectasis, bronchiospasms)... So there we were stuck for 5 weeks while his lungs decided to rejoin the party.

So something going wrong with one system not only makes it more likely for some secondary thing to swoop in and take advantage of a weakened area, but something going on with one system can ALSO affect another system.

So... Medically it makes a lot of sense for this to be a secondary thing going on.

Doesn't mean it is. It may be the same durn thing that was misdiagnosed for whatever reason.

If you're in a top children's regional hospital... Stay. If not, seek a 2nd opinion from your regional children's hospital.

Have they checked out the an intestinal blockage or a problem with the gallbladder? If it was caused by a bacterial infection, like H. Pylori, hopefully they have started him on antibiotics.

I have no advice, but hope and pray you find the answers you need for your son. I can't imagine how awful that would be.

Best wishes!

Oh that's awful. Has he had upper and lower GIs done? Is he at a children's hospital under the care of a pedi GI? Can they get some probiotics into him so that his GI system can start to heal itself from the inside out? Have they ruled out gallbladder and intestinal blockages? Does he take any medications? One of my cousins was hospitalized for stomach issues a couple of years ago. He's 6'4" and his weight dropped to 125 lbs. It took several weeks for the docs to rule everything out and figure out that this was an extreme reaction to a mood stabilizer that he had been on for years. For some reason, his body could no longer tolerate it. Once they knew what they were dealing with, he was able to regain his health.

One of my brothers and I both had odd stomach things when we were kids that were never really diagnosed. He was out of school for almost 6 weeks with pain and vomiting. Many years later than that, when I was 15, I had terrible abdominal and back pain that kept me out of school for almost 4 weeks. All tests were inconclusive and eventually we both recovered and had no issues afterward.

I would seek another opinion and if you don't feel like the hospital he is in is giving him the best care, is there another place you can transfer him to? Or can the pain and symptoms be managed on an outpatient basis?

Hope you have some answers soon!

Oh my goodness B., you need to request a huge meeting of the minds and figure out an action plan. Your son's going to go crazy laying bed that long. Of course the pain meds aren't working, they are starting to lose their efficacy, and the docs will have to increase the dose to get the same results.

The basics:
Are you or are you not at a Children's Hospital? Why or why not?

Have you been seen by a team of doctors, which would include Pediatric Gastro-Interology docs, Peds Infectious Disease Docs, Peds Neurologists? Including the associated nurses?

Has your son been check for E.Coli? Auto Immune diseases like Chrohn's? A virus would have passed by now, unless he became sick with a secondary or tertiary issue.

This sounds horrid and I hope you have answers soon.
GL! Please update us.

first, my sympathies. our health care system has giant problems and you've unfortunately run into them.......

it's time to go "mama bear" - nicely of course. our health care system (unless you're in Kaiser) is not set up to work collaboratively. and most doctors are not trained to work collaboratively. it is now your job, whether you want it or not, to make them work collaboratively. doctors do NOT know all and if you don't push, your son will, sadly, languish.

start with - he is NOT comfortable - what are you going to do to fix that?

then - you don't know what is wrong. who would you send your child to? Mayo's, John Hopkins? then call them, please. should we bring in the infectious disease specialist (think House) - there's a couple in every big city (hopefully w/better bedside manners than House!)? why haven't you consulted them? what are their names? I'd like to call them.

talk to his nurses. ask what doctor or facility they would send their child to at this point. then call that doctor.

lastly - go back to your regular pediatrician. ask her the same questions and get her advocating for you.

good luck. I wish you the best.

I think I would get second, third & fourth opinion. I would think they'd know why he's in so much pain after a month of observation. If you have a children's hospital anywhere somewhat close, please consider having him transported there so he can get the treatment he needs.

It sounds a lot like the gallbladder to me. They need to investigate that if they haven't already (which they should have done). H Pylori is the most common cause of duodenitis. Have they at least kept on on IV fluids?

I am so sorry you are going through this. About three years ago, out of the blue, I became very very sick, like your son. It took several years of being very sick for doctors to learn that I have a rare genetic blood disease... I am not saying your son has this...however, I do know that with my disease, porphyria, it is so rare that most doctors don't know about it...AND the typical pain meds + steroids can worsen it. With porphyria, abdominal pain is a very common symptom...along with many many other strange symptoms (I spent a year vomiting and suffering from vertigo). It is very difficult to test for porphyria because one must be in an "attack" for anything to show up and one's urine must be tested and kept out of the light, and in the US the standards are incredibly high, so, getting a diagnosis can be even more difficult. anyhow, please look at www.porphyriafoundation.com and possibly, just to rule it out, ask your doctor to order a spot urine test for porphyria while your son is sick. I am typing on my touch screen so I need to cut this response short...please please PM me if you want to ask any Q's or want any other info on this specific rare disease. Again, I am not saying that this is what your son has, just that i have been down this path and know what your are going through. your son DOES have is something and it is going to be strange or idiopathic...you have to keep pushing to find an answer.

Have they done a hida-scan on the gallbladder? It's a scan to see how/if it's working ....

Have there been any gastrointerologists brought in for the consultation? They're the stomach experts.
If it's a virus, surely the docs have some antibiotic to deal with the virus. This is too odd.
I would just get the stomach specialists in.
I sure hope you find answers soon, and that he feels better even sooner

Second opinion at children's hospital!
Make sure u go there

Gather all his records. Everything ASAP. Then take them to another doctor
Preferably at a children's hospital. For 2/12 years I looked like Budha. Swollen face, eyes, felt like I was choking. Towards the end I was afraid tomsleep for fear I would not wake up. Had study after study. In hospital several times. My neck was huge. I was so frustrated I showed up at my surgeons office (long medical history will rare condition) one day and acted like a crazy person. Oh yes, I was also told by a radiologist to see a shrink n that I gained weight!!!! So another doc walks in and says call Dr. dickey and send her to him. Well he looks at the SAME angiogram and says "oh I can fix that.". My superior vena cava was 98% occluded. If it ruptured I would have died instantly. He did an angioplasty and the swelling went down within three days. So you see, one doctor seeing one thing another doc sees something else. So get his records, include the CDs of all his scans, blood work I Mean everything and get someone to look at everything. Do not stop until you get an answer. From now on request a copy of anything done. Good luck and keep,us posted.

I see you are at a children's hospital. Find a pediatric GI doc.

My bestie was diagnosed with cancer. Doc wanted to operate. Started talking about removing parts of abdominal organs. She knows how well versed I am in the medical field, so I asked if I could take the ball. She said go ahead. I told the doc I wanted all her records that day and immediately called a world known surgeon in NYC. Had a few connections. Got in the next day. He said, no surgery. She will die immediately. Gave us a plan of action and she lived three years. So second and third opinions are so important. These are just two times when it really paid off. Who knows, it could be something so simple with your son that someone is missing. Is his belly distended. Is he having bowel movements. I hope you get some answers soon. Keep us posted.

what about researching for children's hospitals geared specifically toward gastro-intestinal issues? It sounds like your team has covered all issues, so perhaps they know of a specialist better qualified?

You might check, if you haven't already, with this web site.
http://www.mayoclinic.com/health/gastritis/DS00488
And this one is not really medical but has some ideas.
http://www.ehow.com/about_###-###-####_causes-dudenitis.html
Has yours son taken ibuprophen or similar type drugs for a period of time? That can cause it and I would wonder if it's something to do with a bacteria. I assume they are not giving him anything to eat or irritate his stomach but maybe he needs something to coat it. I would see a children's G.I. doctor or a specialist in that field to get to the bottom of it. Don't let it go and get another doctor if you have to.

I'm sorry your son is ill and in pain. Remember to take care of yourself & let people help & ask for help, when you need it.

I agree with CW & if he's not seeing a GI specialist, that would probably be best. If you are questioning his quality of care, then it's probably lacking & demand better.

Most of us have compromised immune systems due to our substandard diets (even if we "eat healthy", the food just isn't the same quality as a generation ago due to processing, depleted soils, GMO foods, and so on). So it's very clear there is something else going on AND that he is unable to combat it.

Since you are in a hospital filled with experts, I agree that you need to make some noise and get everyone in the room. Yes, I know they are in demand and that there are other patients. But a month of hospitalization and pain is not acceptable. I would try NOT to research everything yourself on the internet - there is just too much info and you are spending valuable time trying to sort through things.

Getting everyone in the room means the various physicians as well as the hospital social worker and/or a psychiatrist to talk about the effects on your child. Most hospitals have an office of an ombudsman who is charged with being a patient (and family) advocate and helping to navigate these complicated waters. I'd get that person's phone number on speed dial.

I can help you with immune system building once he's out of crisis, but the first thing right now is to manage his care.

Good luck and I am so sorry you are going through this. But no child has a better advocate than a loving and ticked-off parent. Stay strong, and stay angry!

I am so sorry for you and your son, B.. What a terrible trial for you all to go through! I don't really have anything useful to say, I don't think, except perhaps that I would ask this GI doc to call on colleagues from other children's hospital who are PED GI docs. Perhaps they could fill in the missing piece of the puzzle.

My niece, who is a teen, was in the hospital for 3 weeks before they diagnosed Crohn's. She has to go in every 6 weeks for a treatment of some sort (I don't know what it's called, but it's administered intraveneously). She was in tremendous pain and on IV pain meds like you are talking about during that initial hospital visit.

Saying prayers for your son and you~

Dawn

I agree that it is probably time to get some other consultations. U of M and Detroit both have good children's hospitals and they also have a Ronald McDonald House next to it where you can stay for cheap (with your kids if necessary). I am so sorry you are going through this and I hope you get some answers soon.