11yr old boy pancreatitis or something else

[kalvinator]

My son has just come out of hospital (6 weeks) after 3 months approx stomach pains & fevers with frequent visits to the docs (glandular fever diagnosed) he got worse and in hospital his lipase levels were initially 1200 and rose to 3000 he was on tube feeding (didn't stop the pain) and later tpn which helped. His lipase are around 170 last check he has been sent home with low fat diet (he lost 12.5 kilo's in hospital) . He is still having severe stomach pains. he describes it as being around the middle of his stomach and it's a cutting squeezing pain it come in waves though once they kick in it's constant waves (hope this makes sense). He's on buscopan, gabipentin, movicol, and oxycodon for the real bad ones. His MRI and ultrasounds didn't show anything other than a lot of fluid around his bowels. He has always suffered from constipation (especially as a young child) this obviously became serious in hospital with all the medication fentinel, morphine etc.   An adult pancratic specialist came to see him and is concerned it is his bowels that have created the pancreas to flare as the other tests other than high lipase didn't show anything. He is booked for a colonoscopy and mri of the bowels in august, howeveer his pain is still very severe and he believes it is getting worse.  He is doing a BM every day, on a low fat diet with lots of snacks to try and build his weight.

Can you please help or suggest any other possible reasons or test that can be done, he is not functioning he is extremely pale, tried to go back to school and they sent him home.  he has the odd better day but once that pain kicks in it's extremely  hard to stop it even with the medication.  

[kalvinator]

Ii just wanted to lt you know my son was readmitted to hospital yesterday and they have brought all the tests forward they are giving him stronger pain meds and doing a series of other tests.  Literally without pain meds he cannot cope with this any longer.  I'm back on the hospital rollercoaster but I will let you know how we go.

You have been through hell and back and I thank you again for your thoughts and prayers.

[mammo]

I will believe anything anymore, and do understand your frustrations.  With your son's history of constipation, this would lead one to believe that he has had something brewing for quite some time. If they feel his pain is psychological to avoid school, why would they put him on such strong pain medication?  Doesn't make sense. I have never known anyone to become this ill from a glandular fever, and require hospitalization, but he is very young to have glandular fever, maybe this made a difference. My son had FAP hereditary cancer, which took his father at 32.  When he was 16 he had to have his colon removed.  Several years later he was experiencing stomach pain.  His surgeon told us that he felt it was adhesions, and if he could live with the pain he should, BUT, if my son wanted them to go in and look around they would.  My son looked at me and said he thought they needed to go in and see what was going on.  Feeling he knew his body best, we agreed.  What they thought were adhesions  was actually a 28lb Desmoid Tumor!  The tumor was discovered during an earlier surgery, and they failed to tell us this at the time.  Now, it had invaded and was crushing his major organs, and he was dying.  It's a very long story, but it all goes back to them withholding medical information. I sought a second opinion (too late) which did give my son 2 more years with all of us who love him dearly, after his first 2 surgeons gave him a few days and told him to go home and spend dome quality time with his boys. He died at 31 and left behind 2 little boys, one of which passed away this past Dec. at 18.  from a 38lb Desmoid.  I've seen so much having worked in the medical field most of my life and with my son and grandson.  I cannot express strong enough the need for second and third opinions.  I think your son would prefer school over endless stays in the hospital and all the tests.  Good luck to you, and I will keep your son and your family in my prayers.

[kalvinator]

He did have some of the symptoms of glandular fever but also had the stomach pains. Our frustration is the doctors are now treating his pain as undiagnosed with a bout of pancreatitis in the middle (can you believe that?) His pediatrician doesn't believe he will find anything when they do the other tests and has booked him as an out patient.  because his pain does come and go especially when medicated they felt he should get on with his life and come back for the tests.  I called the hospital last night and was told to bring him to emergency, he was only released last week with instructions if we couldn't cope with the pain at home with all we have then to bring him in. obviously that wasn't the case.  They seem to have linked this with him not wanting to go to school and avoiding it, but he's been sick for so long of course he's anxious, but he still can't pretend this level of pain.  thanks for your comments though we are trying to see another specialist today and bring the tests forward.  I'm sorry for your loss and I know you understand the sheer frustration and heartache this brings.

[eRetriever]

I was just diagnosed with Gastritis due to long time morphine use.  No, my stmptems are still presant.

[mammo]

I think your son needs a colonscopy ASAP, and would not wait until August.  With him having been in the hospital they could have very easily done it there.  There is no need for him to have to suffer like this until then, and they have him on some very strong pain meds for his age! Have they ruled out partial bowel blockage, juvenile polyposis?  Severe stomach pain is NOT a symptom of glandular fever!  Symptoms are fever, sore throat,headache, nausea, blocked nose and swollen lymph nodes, not severe stomach pain. It also never requires hospitalization, and cures itself within 2 weeks.  I am on these blogs because I lost a son and recently a gandson due to medical negligence, and I feel your son deserves better care and diagnosis than he has received from this hospital. I can't believe they would even release him in this extreme pain, and not have done more extensive testing while he was there!  I do think this is related to his colon, see if you can get him in to see a pediatric gastroenterologist.  Tell them how severe his pain is so they will get him in immediately.  I feel so bad for your son and for you to have to watch him endure such pain.  Please don't wait, and keep us posted as to how he is doing.