14 year old daughter and undiagnosed GI pain

Posted by mkirby19 @mkirby19, Fri, Sep 6 8:48am

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.

Liked by Ingegerd Enscoe

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.

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@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?

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@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.

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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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@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!

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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?

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@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?

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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.

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@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.

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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.

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@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.

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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 !

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@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?

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

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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

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@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

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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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Hello mkirby19 ,  My heart goes out to you as my daughter went through something similar and finding no answers is torture.  My daughter started complaining of stomach pain, feeling nausea and vomiting off and on from the age of 11.
  For over 3 years we had every test you can think of and no real answers. When no answers were found they blamed it on her nerves, depression, etc and she had to be home schooled. Then a doctor decided to check her hormones and found that she was producing to much Prolactin  and he ordered a MRI of her brain which turned out to be a pituitary tumor. This type of tumor I was told will not show on a cat scan.  Because all of her complaints had to do with the stomach we never thought to check anything else. She did not exhibit any of the normal symptoms people show with this type of brain tumor. I was later told that nausea and or vomiting that continues for long periods of time ( even if it's not everyday) should always be checked out for tumors.  My thoughts are with you and your daughter, nothing in this world is worse then having a sick child and not getting any answers.

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Hello @koryn and welcome to Mayo Connect.

I am so pleased to hear that you found an answer to your daughter's problems and I congratulate you on being an advocate for her! Your persistence really paid big dividends. Your post will be very encouraging for @mkirby19

Did your daughter have surgery for her tumor? How is she doing now?

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@koryn

Hello mkirby19 ,  My heart goes out to you as my daughter went through something similar and finding no answers is torture.  My daughter started complaining of stomach pain, feeling nausea and vomiting off and on from the age of 11.
  For over 3 years we had every test you can think of and no real answers. When no answers were found they blamed it on her nerves, depression, etc and she had to be home schooled. Then a doctor decided to check her hormones and found that she was producing to much Prolactin  and he ordered a MRI of her brain which turned out to be a pituitary tumor. This type of tumor I was told will not show on a cat scan.  Because all of her complaints had to do with the stomach we never thought to check anything else. She did not exhibit any of the normal symptoms people show with this type of brain tumor. I was later told that nausea and or vomiting that continues for long periods of time ( even if it's not everyday) should always be checked out for tumors.  My thoughts are with you and your daughter, nothing in this world is worse then having a sick child and not getting any answers.

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Thank you so much for the information! I had never thought of tumors, we are seeing her dr next week and I will be sure to push for testing! I’m glad your daughter is doing better, you know how hard it is watching your child in pain is devastating. I hope my prayers will be answered soon! Thank you again !

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@hopeful33250

Hello @koryn and welcome to Mayo Connect.

I am so pleased to hear that you found an answer to your daughter's problems and I congratulate you on being an advocate for her! Your persistence really paid big dividends. Your post will be very encouraging for @mkirby19

Did your daughter have surgery for her tumor? How is she doing now?

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Thank you Teresa, They put her on a medication that slows or blocks the production of prolactin and she had to have blood test frequently and MRI's every 6 months. With the medication keeping the tumor size down she has done very well and avoided surgery. She is now 34, married and very active but will have to be monitored for life.

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@mkirby19

Thank you so much for the information! I had never thought of tumors, we are seeing her dr next week and I will be sure to push for testing! I’m glad your daughter is doing better, you know how hard it is watching your child in pain is devastating. I hope my prayers will be answered soon! Thank you again !

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I hope you get some answers soon and my thoughts and prayers are with you!

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