Severe upper abdominal pain in 12 year old

Posted by emsher @emsher, Oct 11, 2019

My son has had severe pain, very localized on his upper right abdomen up under his rib cage for the past 6 months. It came on very suddenly and has been constant and severe (8-9/10). He had many tests done with no answers before being referred to a pain clinic where he has been a patient the past 3 months. He has been given a vague diagnosis of a nerve injury or myofascial pain. He had a nerve block injection in July which was not successful, however the lidocaine injection that preceded it did relieve his pain for about 30 minutes. He has a rigorous physio therapy and psychology regime, and though his coping and function have improved he has had no relief of pain. He is vomiting daily from pain and only managing 1-2 hours of school daily (with a huge effort). He has been able to be very active, but needs to regulate the intensity of activity as deep breathing increases his pain. There seems to be some connection with the diaphragm/psoas. Just looking for others who have perhaps dealt with similar issues and ideas of what has helped. So far nothing provides even the slightest relief.

Hi @emsher that sounds so difficult to watch your son deal with so much pain.

I'd like to introduce you to @mamacita and @sandytoes14 as they have experience with chronic pain and may be able to share their experience with you and offer you support.

Back to you @emsher, does your son's pain clinic program have an end date?

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@ethanmcconkey

Hi @emsher that sounds so difficult to watch your son deal with so much pain.

I'd like to introduce you to @mamacita and @sandytoes14 as they have experience with chronic pain and may be able to share their experience with you and offer you support.

Back to you @emsher, does your son's pain clinic program have an end date?

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No end date. I believe he will remain an active case until he has some resolution or at least improvement, but at the moment he will have monthly check-ins as they “wait and see” if there is improvement.

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@emsher – I am so sorry to hear what your son is going through- especially since there is no definitive diagnosis. Would you mind sharing what tests he has had as well as any specialists he has seen? Also- Pediatrics or Internal Medicine?

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@astaingegerdm

@emsher – I am so sorry to hear what your son is going through- especially since there is no definitive diagnosis. Would you mind sharing what tests he has had as well as any specialists he has seen? Also- Pediatrics or Internal Medicine?

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Early on he had a number of ultrasounds, xrays and an MRI to rule out digestive and organ related issues. All those tests looked normal. The paediatric pain clinic has a team of doctors with various specialities in clinical investigation, pain, and anaesthesia. At this point they don’t feel that any further diagnostic testing is necessary, and are recommending a ‘3P’ approach (Physiotherapy, Psychology, pharmacology). He has regularly been seeing physiotherapists, massage therapists, and a psychologist who specializes in pain management. We have also tried acupuncture, but it seemed to aggravate the pain. We have just started seeing an therapeutic osteopath who we feel may be on to something, but he’s only had one treatment so far. He is currently taking gabapentin for pain, though it does not appear to be overly effective. And he was prescribed Fluoxetine early in the process, which has not helped with pain but has helped with coping, so we are continuing with it for now.

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@emsher – Thank you for all the information! It sounds like he is in good hands for now. Since your son doesn’t manage more than a couple of hours a day of school, does he get extra tutoring at home?
My son was home a lot in 6th grade and 8th grade- we still don’t know exactly what was wrong with him- and got home tutoring. He is 32 now.
I hope you will have an answer soon.

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@emsher I'm so sorry to hear of your son,s pain for a 12 yr old cant understand what it could be you said you had test done to rule out things. Just want to ask have the Dr.s looked at the gallbladder duct or hepatic duct in the liver ,has he seen a chiropractor about the pain could be nerve from the back ,my son hurt his chest and the chiropractor helped him . Just a thought .

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My grandson, now 20 years old, has had daily nausea, vomiting and severe abdominal pain for over 2 years. He, too, missed a lot of school and, with the help of his teachers, was able to do enough to graduate from high school. He, too, has had every g.i. test in the book,, as well as MRI's ultrasounds, EEG, colonoscopy, plus many more. Has tried acupuncture , muscle and spine stimulation, nerve pain injections. Has been tested for Addison's disease. He was recently tested for porphyrins. One test revealed a high level, but the second test was insignificant. We are looking into genetic testing and also Mast Cell Activation Disease, which affects every part of the body. We have a referral for an immunologist to check this out. Also just had lab work done on histamine and magnesium levels. No results on that yet. We just have to keep looking ourselves, because primary care doctors don't have a clue and really don't have the time to do research for patients. My grandson also as type ! diabetes since he was 10 months old. I just wish someone would find a correct diagnosis for the pain and nausea.

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@grammajackie – Welcome to Mayo Clinic Connect!
I understand how difficult life is now for your grandson. He has had significant testing already- no answers though. I am glad he is going to see an immunologist. Since he has type 1 diabetes which is an autoimmune illness, he could also have a second autoimmune disease. We would appreciate it if you give us a follow up after his visit to the immunologist. Maybe we have other members that can share information? Please post any time about your grandson.

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@astaingegerdm

@grammajackie – Welcome to Mayo Clinic Connect!
I understand how difficult life is now for your grandson. He has had significant testing already- no answers though. I am glad he is going to see an immunologist. Since he has type 1 diabetes which is an autoimmune illness, he could also have a second autoimmune disease. We would appreciate it if you give us a follow up after his visit to the immunologist. Maybe we have other members that can share information? Please post any time about your grandson.

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Thank you. We have to go through the referral process, which takes forever,and then another wait to get an appointment, IF they decide to take his case. It's been a very frustrating time with the medical professionals. We have a referral to a genetics clinic, but they told me the referral takes at least a month to review, and then (if accepted) scheduling an appointment is a year out! Unbelievable.

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@astaingegerdm

@grammajackie – Welcome to Mayo Clinic Connect!
I understand how difficult life is now for your grandson. He has had significant testing already- no answers though. I am glad he is going to see an immunologist. Since he has type 1 diabetes which is an autoimmune illness, he could also have a second autoimmune disease. We would appreciate it if you give us a follow up after his visit to the immunologist. Maybe we have other members that can share information? Please post any time about your grandson.

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Mast Cell Activation Syndrome may be what my grandson is experiencing. We sent his blood sample to Florida for an MRT test, which is a food sensitivity test. Pricey, but it came back within 2 days. It showed he was very sensitive to turkey! That was the only high level one. The other moderate ones included some foods and fish that he doesn't really eat, and some chemicals: aspartame, capsaicin,, tyramine, MSG. Being diabetic, he has consumed many artificially sweetened foods and beverages. He has stopped drinking diet sodas, and after only 3 days, his morning nausea and pain have somewhat disappeared! Research on aspartame indicates that once it is consumed, it turns into methanol, which then turns into formaldehyde when it heats up in the body. How terrifying! The capsaicin is from chili peppers, so we are trying to reduce that in his diet. He loves tacos, chili, etc., so this may be more difficult. Corn was also on the moderate sensitivity list, and trying to eliminate all the things that have corn will be hard. Buying organic is probably our best choice. Hope this helps someone with daily abdominal pain and nausea.
With the virus pandemic on right now, doctor appointments have been put on the back burner. No telling when his referral with the immunologist will be acknowledged.

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@grammajackie – Thank you for telling us the very important results of the MRT testing! Really great that you now have something to work with. I’m reading more and more about the bad effects of artificial sweeteners. Good luck- hope this will explain his pain.

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