Feeling full 10 year old

Posted by needhelpparent @needhelpparent, Feb 19, 2020

Hello,

My daughter who is 10 years old has been having complaints of abdominal fullness since August 2019.  It was occasional complaint then and wasn't affecting her eating then.  Started in October, the complaint grew stronger and she wasn't able to eat her school snacks, but still finished all her food.  In December, it got worse to the point she wasn't able to eat much at dinner and complaining she feels really full.  Dinner was a big struggle, she still managed to finish all her breakfast and lunch.  Up to January, daughter couldn't take any food at all, she says she feels really full all the time.  She is also experiencing constipation, she also experiences headache when she feels really full.  We have done all kinds of tests, x-ray, CT scan, endoscopy, ultrasound, upper GI test, blood tests, all have come back normal.   Now they diagnosed her as eating disorder.  I understand that she has some anxiety/fear over eating due to her fullness in the tummy, but it's not due to anything else.  Is this a form of eating disorder?
 
She was admitted to the hospital 3 weeks ago, tube feeding was started on her as she was
 malnourished and had lost lots of weight over the months.  She is experiencing severe symptoms towards the tube feed.  We were told the symptoms should get better over time as she adjusts to the feed, but after a week, she was still feeling awful.  She experiences burning in her throat, pain in her chest, stomach, fullness and sick feeling in her stomach, nausea but not able to throw up, she also burped lots with acid reflux coming up.  She felt really distressful with the tube.  When offered the food, she is not interested at all.  She said she feels really full.  She has started on the solids 5 days ago with the eating disorder program, she can only eat minimal amounts, she threw up almost on all meals. She was offered anti nausea meds after, have not thrown up but felt lots of discomfort.  I can see that she hunches down with lots of discomfort.  I wanted to help my daughter but don't know how.  Should I get a second opinion on her abdominal fullness?  She said the full feeling is not the same as a full feeling when you eat lots of food.  When she has a bowel movement, she does feel a little better. I am really lost at this point and desperately wanted to help my daughter.

Any advise you can offer is much appreciated.

Thank you @astaingegerdm ,@thull, @ken82!  Her bowel movement at the worst was 4 days no movement.  Her fullness doesn't seem to go away, initially at the onset it was there occasionally, now always there even when she had no food to take for a few days, is this usual?  When she was preparing for endoscopy, they cleaned up her bowel, she said she still feels full, I was puzzled.  She said this fullness doesn't feel the same as an eating a full meal full.  Were you feeling this way? I have not seen any progress on her eating since we started the eating disorder program, thus not encouraged.

With the food emtying tests and all other tests, how many days would you need to stay at Mayo?  If we have some tests done already here, do we need to repeat them at Mayo? 

Thank you for your help!

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The gastric emptying was most of one day, then back early the next morning and then done.

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@needhelpparent

Thank you @astaingegerdm ,@thull, @ken82!  Her bowel movement at the worst was 4 days no movement.  Her fullness doesn't seem to go away, initially at the onset it was there occasionally, now always there even when she had no food to take for a few days, is this usual?  When she was preparing for endoscopy, they cleaned up her bowel, she said she still feels full, I was puzzled.  She said this fullness doesn't feel the same as an eating a full meal full.  Were you feeling this way? I have not seen any progress on her eating since we started the eating disorder program, thus not encouraged.

With the food emtying tests and all other tests, how many days would you need to stay at Mayo?  If we have some tests done already here, do we need to repeat them at Mayo? 

Thank you for your help!

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Mayo MN uses Epic Medical Records system.. perhaps if your clinic uses the same you would not have to transport those other test results. But these days you can get your records in a CD ..ask , some newer equip makes for more accurate results… good luck

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@needhelpparent

Hi Ken, They did an upper GI test on my daughter where a fluid was given to her to drink and they observed thru the xray to see how quick the fluid travels down to the intestine. I am wondering if this test is similar to the one you had? But we didn't have a food swallowing test though. Thanks!

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That pill test is not the same as the Mayo eating and tracking test…I had that pill test too and they said that I was fine… Not so.. after 2 months the
home Iowa clinic GI doc even tried to prescribe a non FDA approved drug but I went to Mayo then…the last straw. ..

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@needhelpparent

Thank you @astaingegerdm ,@thull, @ken82!  Her bowel movement at the worst was 4 days no movement.  Her fullness doesn't seem to go away, initially at the onset it was there occasionally, now always there even when she had no food to take for a few days, is this usual?  When she was preparing for endoscopy, they cleaned up her bowel, she said she still feels full, I was puzzled.  She said this fullness doesn't feel the same as an eating a full meal full.  Were you feeling this way? I have not seen any progress on her eating since we started the eating disorder program, thus not encouraged.

With the food emtying tests and all other tests, how many days would you need to stay at Mayo?  If we have some tests done already here, do we need to repeat them at Mayo? 

Thank you for your help!

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Hello @needhelpparent,

I’d like to offer some information about tests and gastroparesis and other intestinal disorders care at Mayo Clinic.

Mayo Clinic has doctors who specialize in disorders involving the movement of food through the digestive system (motility disorders). Tests for gastroparesis involve the entire digestive tract, and some of the newest technology was developed at Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/gastroparesis/care-at-mayo-clinic/mac-20355796
If you’d like to make an appointment at Mayo Clinic, please call one of our appointment offices – you can also request an appointment online. The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here:
http://mayocl.in/1mtmR63
The Clinic’s representatives/schedulers will ask questions to help direct you to the best specialist, either at Mayo or closer to home.
In most cases, Mayo Clinic doesn't require a physician referral, although some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need.

Please let me know if you need more information; you’ve come to the right place to talk with people who’ve had similar experiences, and to get support from members who understand what you are going through. I wish you and your daughter the best of luck.

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My GI doctor at Mayo MN is Dr. M. Halland.. really good.. he takes time to explain things…

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The Mayo Doctor prescribed a multi vitamin, Mirtazapine (a anti-depressant that he said would make think that I needed to eat…) .. also the generic Nexium.. to cut down on stomach acid production.. There is in my case a lot of intestinal gas with the gastroparesis…(slow emptying of stomach) … I take gas X… When I go out to eat I usually carry Papaya extract pills.. as there is a foam that often occurs in the stomach and that causes acute bloating… a few of those Over the Counter Papaya pills give me relief in 15 to 20 minutes…Good Luck in your search for a diagnosis..Ken

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@needhelpparent

Thank you so much Ken! I was wondering about the test you had mentioned, why they didn't perform this test on her. I will ask the doctor. We are located in Canada. Thank you!

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Hello @needhelpparent,

Since you reside in Canada, here is some information on appointments for international patients,
https://www.mayoclinic.org/departments-centers/international/appointments

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Thank you everyone! Thank you @ken82 for sharing! We met with the drs, they said gastroparesis is rare in children and children with eating disorders would have gastroparesis. I am not convinced that my daughter has eating disorder. It's more so of an underlying condition that makes her unable to eat. Daughter told me it's really hard to eat. They are trying to get her to eat with her symptoms, I can see her hunching down, really uncomfortable in her tummy. It really hurts, I really wish there is a medicine that can relieve of her symptoms. They've given her multivitamin, the laxative and nexum for acid reflux. I was wondering how many days would be required for the Mayo visit if we were to come for a diagnosis? Thank you

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@needhelpparent

Thank you everyone! Thank you @ken82 for sharing! We met with the drs, they said gastroparesis is rare in children and children with eating disorders would have gastroparesis. I am not convinced that my daughter has eating disorder. It's more so of an underlying condition that makes her unable to eat. Daughter told me it's really hard to eat. They are trying to get her to eat with her symptoms, I can see her hunching down, really uncomfortable in her tummy. It really hurts, I really wish there is a medicine that can relieve of her symptoms. They've given her multivitamin, the laxative and nexum for acid reflux. I was wondering how many days would be required for the Mayo visit if we were to come for a diagnosis? Thank you

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Hello @needhelpparent

In order to find out how many days would be required for a diagnosis, I encourage you to follow the link I provided in my other post and give Mayo a call. They can help you understand the appointment process. Here is the link once again, https://www.mayoclinic.org/departments-centers/international/appointments

On this link regarding international patients, you will see the following information,

"Efficient scheduling
In most cases, Mayo Clinic doctors provide both diagnosis and treatment within the same patient visit. Doctors usually can report diagnostic test results to patients one or two days after testing is completed. The schedule of appointments for tests, physician consultation and treatment can often be compressed into a short period for international patients. This means less time away from home, less expense and more efficient use of patients' and family members' time."

Does this help?

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@needhelpparent I'm so sorry your daughter is going through all this! I am 39 and have Gastroparesis diagnosed last year. I went for 2 decades misdiagnosed until I started demanding tests. I got rapidly worse last year and was sent to UW hospital and then referred to Mayo in Minnesota. I live in Wisconsin and it's about 6 hour drive to Rochester. I got a appointment very easily and was told to book a week's stay and I was there for 5 business days. Every day was tests, x-rays, exams, etc… It was exhausting but worth it. Every day was filled with appointments on the campus. Very easy to get around and very helpful staff. It's like a small city. I was already diagnosed with Gastroparesis from my local GI but they weren't sure what to do. Mayo confirmed that diagnosis. I had different tests done including those mentioned with eating a large portion of eggs and bread with a glass of milk and x-rays for the next 2 days every few hours (except overnight). I also had to swallow a pill with 23 tracer pills inside and those were monitored as they traveled through my system. Also blood tests, MRI's, CT's etc. It all depends on your particular case and diagnosis. I have other conditions now because of the disease but each person is different. I stay in touch with my doctor there though the patient portal and if need be, I will go back. My understanding is that there isn't much you can do for this but manage it. I wouldn't hesitate to go there as they are very good and fast with treatment. She'll be in good hands if you go and ask questions!!! Hugs to you and your daughter.

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@tykehome

@needhelpparent I'm so sorry your daughter is going through all this! I am 39 and have Gastroparesis diagnosed last year. I went for 2 decades misdiagnosed until I started demanding tests. I got rapidly worse last year and was sent to UW hospital and then referred to Mayo in Minnesota. I live in Wisconsin and it's about 6 hour drive to Rochester. I got a appointment very easily and was told to book a week's stay and I was there for 5 business days. Every day was tests, x-rays, exams, etc… It was exhausting but worth it. Every day was filled with appointments on the campus. Very easy to get around and very helpful staff. It's like a small city. I was already diagnosed with Gastroparesis from my local GI but they weren't sure what to do. Mayo confirmed that diagnosis. I had different tests done including those mentioned with eating a large portion of eggs and bread with a glass of milk and x-rays for the next 2 days every few hours (except overnight). I also had to swallow a pill with 23 tracer pills inside and those were monitored as they traveled through my system. Also blood tests, MRI's, CT's etc. It all depends on your particular case and diagnosis. I have other conditions now because of the disease but each person is different. I stay in touch with my doctor there though the patient portal and if need be, I will go back. My understanding is that there isn't much you can do for this but manage it. I wouldn't hesitate to go there as they are very good and fast with treatment. She'll be in good hands if you go and ask questions!!! Hugs to you and your daughter.

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Thank you so much @tykehome for sharing your experiences, appreciate it. I will definitely keep that in mind, I hope she gets through the difficulties. All the best to you and take care!

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