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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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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@koryn

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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@koryn That is wonderful that your daughter has been able to avoid surgery. I'm pleased for her!

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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 good information from your doctor, @mkirby19. If you can, will you update after her next appointment?

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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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@koryn - I understand what you went through with your daughter having a pituitary tumor. My daughter had one too- Cushing’s disease that also presented with different symptoms and made her very ill before diagnosis. She had the tumor removed 9 years ago. She is 36 now. I think it’s an advantage that your daughter has not had to have surgery.

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Hello @astaingegerdm

I appreciate you sharing about your daughter's tumor and surgery.

If you are comfortable sharing more, what type of symptoms did your daughter have before the DX of the pituitary tumor? Was her recovery from surgery a difficult one? How is she doing now? Is there a need for regular surveillance to look for recurrence?

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@hopeful33250

Hello @astaingegerdm

I appreciate you sharing about your daughter's tumor and surgery.

If you are comfortable sharing more, what type of symptoms did your daughter have before the DX of the pituitary tumor? Was her recovery from surgery a difficult one? How is she doing now? Is there a need for regular surveillance to look for recurrence?

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Hi @hopeful33250 ,
The initial symptom was enormous weight gain, starting senior year in high school and continued through college. After college she developed hypertension, bipolar depression, diabetes and tachycardia. Also prone to infections. She was not living at home then but saw numerous doctors in FL and they blamed everything on her weight. The diagnosis was finally made by her psychiatrist! He noticed certain physical characteristics- hump upper back and enormous stretch marks. She had a pituitary tumor that produced large amounts of cortisol- our stress hormone. She had successful surgery. Recovery was tough- after having high levels of cortisol she suddenly had nothing. They started her on hydrocortisone tablets and eventually tapered off.
Good result was disappearance of all symptoms! Even the bipolar depression.
She has hormones checked on a regular basis. So far so good.

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