1. < Digestive Health

14 year old daughter and undiagnosed GI pain

Posted by mkirby19 @mkirby19, Sep 6, 2019

Hello, my 14 yr old daughter has had a severe pain in her right side for 3 years. She has nausea and vomiting everyday. The pain is sometimes so bad she can not go to school. We have been to 3 hospitals, she has had 2 endoscopes,1 colonoscopy and it seems like a million other tests. They still have not found anything to contribute to her pain. We are currently seeing a pedo GI, a pedo neurologist and a pedo psychologist. We have tried all the GI meds and she is currently on 90 mg of cymbalta. There has been zero change. We just started acupuncture to see if that would help with some of the pain, too early to tell. I worry about her mental state as she misses school and her friends, but I don’t know where else to turn to . Does anyone have any ideas or know anyone who may be having the same symptoms? Please help!! Thank you.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2019

Hello @mkirby19 and welcome to Mayo Connect. As a mother, I can certainly understand your concern for your daughter! Three years is a very long time to suffer from these kinds of symptoms. You seem to be advocating for your daughter by working hard to find answers and that is commendable. Your daughter is fortunate to have you looking out for her.

Just a few questions come to mind (and please answer only as you feel comfortable doing so): before your daughter started with these symptoms, what was her lifestyle like? Was she involved in sports, hobbies, other activities, etc.? Did she have any accidents prior to these symptoms? Is there any family history of problems similar to hers?

Here are some links to discussions about hard-to-diagnose digestive problems, mainly mesenteric panniculitis as well as median acute ligament syndrome. As you read these posts, you will see how difficult some rare disorders are to diagnose.

Has your daughter visited a multi-disciplinary health system, like a university medical school or a Mayo facility?

https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

Here at Connect, we are not medical professionals, so we cannot offer diagnoses, but we can support and encourage you in your journey to find answers.

REPLY
1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Sep 6, 2019

@mkirby19 - I’m so sorry that your daughter has been suffering so long! It is very difficult to be away from school and friends at that age- two of my children went through “chronic” illnesses in their teens.
Did your daughter have MRI, CT or ultrasound of the abdomen/ pelvis? Evaluating ovaries for example. Another problem causing pain can be related to the hip joint during the growing years.
Do you have a Pediatrician in charge of her care and referrals to specialists?

REPLY
1 reply
mkirby19 | @mkirby19 | Sep 6, 2019
In reply to @hopeful33250 "Hello @mkirby19 and welcome to Mayo Connect. As a mother, I can certainly understand your concern..." + (show)
@hopeful33250

Hello @mkirby19 and welcome to Mayo Connect. As a mother, I can certainly understand your concern for your daughter! Three years is a very long time to suffer from these kinds of symptoms. You seem to be advocating for your daughter by working hard to find answers and that is commendable. Your daughter is fortunate to have you looking out for her.

Just a few questions come to mind (and please answer only as you feel comfortable doing so): before your daughter started with these symptoms, what was her lifestyle like? Was she involved in sports, hobbies, other activities, etc.? Did she have any accidents prior to these symptoms? Is there any family history of problems similar to hers?

Here are some links to discussions about hard-to-diagnose digestive problems, mainly mesenteric panniculitis as well as median acute ligament syndrome. As you read these posts, you will see how difficult some rare disorders are to diagnose.

Has your daughter visited a multi-disciplinary health system, like a university medical school or a Mayo facility?

https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

Here at Connect, we are not medical professionals, so we cannot offer diagnoses, but we can support and encourage you in your journey to find answers.

Jump to this post

Thank you for your help! Yes she was very involved in competition cheer. No injuries though. Our next step was possibly Mayo, although her GI said that they wouldn’t have any answers either! I will look into the links you sent. Thank you so very much!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2019
In reply to @mkirby19 "Thank you for your help! Yes she was very involved in competition cheer. No injuries though...." + (show)
@mkirby19

Thank you for your help! Yes she was very involved in competition cheer. No injuries though. Our next step was possibly Mayo, although her GI said that they wouldn’t have any answers either! I will look into the links you sent. Thank you so very much!

Jump to this post

Hello again, @mkirby19

Mayo has a well-earned reputation for diagnosing hard-to-diagnose and/or rare disorders. There are three Mayo facilities. Here is information on how you can get an appointment,

https://www.mayoclinic.org/appointments

I look forward to hearing from you. Will you keep in touch?

REPLY
1 reply
mkirby19 | @mkirby19 | Sep 6, 2019
In reply to @astaingegerdm "@mkirby19 - I’m so sorry that your daughter has been suffering so long! It is very..." + (show)
@astaingegerdm

@mkirby19 - I’m so sorry that your daughter has been suffering so long! It is very difficult to be away from school and friends at that age- two of my children went through “chronic” illnesses in their teens.
Did your daughter have MRI, CT or ultrasound of the abdomen/ pelvis? Evaluating ovaries for example. Another problem causing pain can be related to the hip joint during the growing years.
Do you have a Pediatrician in charge of her care and referrals to specialists?

Jump to this post

Thank you, yes we have a primary care who sent us originally to the pedo GI, but we were referred to neurologist by our psychologist. I took her to gyn, they would not even look at her due to her age. No exam just touched her stomach. She had this issue prior to starting menstration, so they felt it wasn’t an overy issue.Gor some reason no one will do an MRI on her. We have multiple ultrasounds but no other x-rays. Sometimes I think they believe it is anxiety nothing more. Thank you for reaching out. I hope your children are doing better since their illness’s.

REPLY
1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Sep 6, 2019
In reply to @mkirby19 "Thank you, yes we have a primary care who sent us originally to the pedo GI,..." + (show)
@mkirby19

Thank you, yes we have a primary care who sent us originally to the pedo GI, but we were referred to neurologist by our psychologist. I took her to gyn, they would not even look at her due to her age. No exam just touched her stomach. She had this issue prior to starting menstration, so they felt it wasn’t an overy issue.Gor some reason no one will do an MRI on her. We have multiple ultrasounds but no other x-rays. Sometimes I think they believe it is anxiety nothing more. Thank you for reaching out. I hope your children are doing better since their illness’s.

Jump to this post

I’m surprised she has not had any imaging of her abdomen and pelvis. I know there is a concern regarding the radiation of CT scans, but MRI is safe.
The pain must be very severe to cause nausea and vomiting. I would not accept a psychological cause for the pain.

REPLY
1 reply
mkirby19 | @mkirby19 | Sep 6, 2019
In reply to @astaingegerdm "I’m surprised she has not had any imaging of her abdomen and pelvis. I know there..." + (show)
@astaingegerdm

I’m surprised she has not had any imaging of her abdomen and pelvis. I know there is a concern regarding the radiation of CT scans, but MRI is safe.
The pain must be very severe to cause nausea and vomiting. I would not accept a psychological cause for the pain.

Jump to this post

I agree, for her to go through all of the testing, it’s hard to believe it is in her head. I’ll keep pushing the doctors !

REPLY
mkirby19 | @mkirby19 | Sep 6, 2019
In reply to @hopeful33250 "Hello again, @mkirby19 Mayo has a well-earned reputation for diagnosing hard-to-diagnose and/or rare disorders. There are..." + (show)
@hopeful33250

Hello again, @mkirby19

Mayo has a well-earned reputation for diagnosing hard-to-diagnose and/or rare disorders. There are three Mayo facilities. Here is information on how you can get an appointment,

https://www.mayoclinic.org/appointments

I look forward to hearing from you. Will you keep in touch?

Jump to this post

Thank you for your help! Yes I will keep you posted.

REPLY
1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 6, 2019

Hello @mkirby19,

As a mother, I can only imagine how worried you must be!
I’m also surprised that your daughter has not had any imaging of her abdomen and pelvis. An abdominal X-ray, an abdominal ultrasound, computerized tomography (CT) scan or magnetic resonance imaging (MRI) will rule out more serious causes like appendicitis or kidney stones. Left untreated, these conditions can cause severe complications! https://www.mayoclinic.org/diseases-conditions/appendicitis/symptoms-causes/syc-20369543

I’m tagging @fde11 @dntsass01 @houbrem @nanny23 @elle1233 @bborth @bentley33 @jt5369 @lring, to share their experiences and insights which might help you.

@mkirby19, if there is one thing I've learned from the Connect, community it is that you should never give up until you find the right therapy or the right person who can help you in the best possible way. If you are interested in getting a second opinion from Mayo Clinic, here is the link to do so: http://mayocl.in/1mtmR63

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2019
In reply to @kanaazpereira "Hello @mkirby19, As a mother, I can only imagine how worried you must be! I’m also..." + (show)
@kanaazpereira

Hello @mkirby19,

As a mother, I can only imagine how worried you must be!
I’m also surprised that your daughter has not had any imaging of her abdomen and pelvis. An abdominal X-ray, an abdominal ultrasound, computerized tomography (CT) scan or magnetic resonance imaging (MRI) will rule out more serious causes like appendicitis or kidney stones. Left untreated, these conditions can cause severe complications! https://www.mayoclinic.org/diseases-conditions/appendicitis/symptoms-causes/syc-20369543

I’m tagging @fde11 @dntsass01 @houbrem @nanny23 @elle1233 @bborth @bentley33 @jt5369 @lring, to share their experiences and insights which might help you.

@mkirby19, if there is one thing I've learned from the Connect, community it is that you should never give up until you find the right therapy or the right person who can help you in the best possible way. If you are interested in getting a second opinion from Mayo Clinic, here is the link to do so: http://mayocl.in/1mtmR63

Jump to this post

Hello @mkirby19, Kanaaz, @kanaazpereira
Many of us on Connect have had hard-to-diagnose and/or rare disorders and persistence and second/third/fourth opinions have made a difference.

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