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sandersmom
@sandersmom

Posts: 4
Joined: Mar 29, 2017

Daughter is constantly ill? Is it nothing or a Gastro/ Auto Immune or?

Posted by @sandersmom, Apr 4, 2017

I am concerned about my 7 year old daughter. She has started complaining about having a “bubble” feeling in her throat. She says sometimes it is big and sometimes it is not. She does not want to eat because when she does she feels nauseas. When she gets nauseas she gets the chills really bad and begins to shake, have diarrhea. This has been going on since the beginning of March. She is not getting good sleep because this “bubble’ wakes her up, she has dark circles around her eyes, and she is constantly tired. We have brought her to out pediatrician, they did an x-ray which she thought looked normal, bloodwork which was fine and autoimmune tests (celiac) which was negative. They put her on antacids and said it must be acid reflux, but the medication has not helped and the bubble in constantly there and my poor daughter is not herself and completely run down. I also worry because she has been sick since the end of December every two weeks with some sort of illness. The end of December she had 103 temperature and was having labored breathing, headache and cough at times – they said it was croup. She seemed to get bette than two weeks later had bad headaches, tired constantly, had stuffed up nose, hard to breathe they said they could test her for pneumonia but when listening to her chest she sounded ok. She got better for a couple weeks than end of January she had bad headaches, congested, body aches and tired all the time. They said it was a sinus infection. She got better for a week and a half and then came home one night after school and started vomiting she threw up at least 15 times and could not even lay down or take a spoonful of water or it would come right back up. She got better for a week and now we are dealing with this feeling of a bubble in her throat, headaches and nauseas all the time and this has been going on since March 7th. Oh and after they did her stomach x-ray that looked normal the radiologist called my pediatrician to say there is a tumor on her hip they found so we need to bring her back and do a hip x-ray. They said after the hip x-ray that it seems to be benign. I just worry with her immune system getting kicked down all the time and in a house of 6 she is the only one getting sick constantly. I don;t know if it is a gastro issue, auto immune issue, or what to do. My daughter asks me if she is ever going to feel normal and good again?? I am truly at a loss as to what might be going on with her, but just want her to feel better. Any ideas?

REPLY

Hello @sandersmom,

As a parent, I can imagine how worried you must be; we feel so helpless when we see our kids go through such stress distressing symptoms. We are glad you’ve joined Connect…you’ve joined a community that is going to try and get you the much needed support, and hopefully some resources for your daughter to begin her journey towards good health.

I’d encourage you to view this discussion in the Autoimmune Diseases group:
Autoimmune diagnosing problem: http://mayocl.in/2nYKyr5
There, you’ll meet @brie87144 @wesbig @sebley12 @dogmamat @crhp194 @soitis4590 @debdeb who may be able to join us with more information.

In this other ongoing discussion, Esophagus issues, http://mayocl.in/2oEZJnL, @brie87144 @ryman @danybegood1 have talked about some similar symptoms as your daughter’s and I hope they too, can offer some insight.

@johnbishop, do you have any suggestions for @sandersmom?

Hello @sandersmom, I’m glad you found Connect. @kanaazpereira provided some great starting points and hopefully the people she tagged will be able to provide some helpful information. It’s an awful thing to see your child sick and not know what’s going on with them or what you can do to help them. It sounds like there have been several doctors and her pediatrician involved but if they still haven’t found the cause it might be worth seeing if there is a specialist that may be able to help.

If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida
can be found here http://mayocl.in/1mtmR63.

You can find out more about billing and insurance at Mayo Clinic here: http://mayocl.in/2kk2hF8

Here is a video that may offer some insight on how to proceed.
“What happens when you have a disease doctors can’t diagnose” – TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

http://bit.ly/2nvf21H

Keep pushing your doctors for answers and keep asking any questions. It may be helpful to write down all of your daughters symptoms, dates, treatments, etc. so that it can be quickly accessed and help you formulate questions for the doctors and also provide them with as much symptom/environment information as possible. Hoping you get some answers soon.

John

I am so sorry for what you and your daughter are going through. These things can be so frustrating. I have been dealing with something for about two years.i was treated for Lyme disease and felt much better for a few weeks, then the symptoms came back, only worse. I have that “bubble” feeling a lot. Feels like a ball of air in the esophagus. I have more tests next week. I certainly hope you find an answer soon. It is bad enough for me but for a young child and her mother it must be very bad. All I can offer is just keep pushing for answers, give them all the information you can. Wishing the best for you.

So sorry she has to feel like she will never feel well. Encourage her with hope that it can and will be figured out, it will take time and tenacity. I along with many children felt this way. I was diagnosed with everything possible. Four years ago at age 53 I was finally tested for Celiac. The symptoms for autoimmune diseases, IBS, IBD, crohns, colitis can all be so similar. Get and read Jennifer Esposito’s book it is very empowering. How is her glucose levels. Also check the side effects for meds. I had an allergic reaction the second time I took zpac. I had all of her symptoms but you need a cause in order to help her. Dietary changes are cheap and easy tests. Whole30 or a Paleo diet is a very good idea. Give it several weeks and see if it helps her sufferings. I am a Mayo patient and highly suggest spending a week in FL. AZ. or MN. to get some good GREAT care and finally some answers. Keep getting all kinds of advice and never stop fighting for her health. There are answers you just need to get some intense care. They will work to solve it quickly without months of different appointments with different specialists all the while with her needlessly suffering. Good luck!!!

Thank you for your feedback, I have been driving myself crazy looking online. We have an appointment with the Pediatric Diagnostic Center at the Mayo on Weds. My daughter is petrified of Dr’s so I am hoping it won’t be to overwhelming for her. Does anyone know if I should just plan to be there for a couple of hours, the whole day or if I should make arrangements to spend the night. Will they do tests on her that day? What can I expect the at the first diagnostic appointment? Will we have to come back the next day? I just hope we are not going to be told that her bloodwork is normal and they do not know what it is. She can be fine and then the next minute she is nauseated and curled up in a ball. All she wants to do is lay in her bed and has no energy to do a lot and the headaches that she is constantly getting worries me. My pediatrician did run the celiac test but that came back negative. I also notice she will be walking at times and her knee will give out or buckle, I hope the tumor that they found on her hip is not causing this. I plan to maybe take her to a movie while in Rochester or do something fun with her. So if you have any ideas that my husband and I can do with my daughter I would love to hear.

Hi @sandersmom,

I can understand being stressed about your first visit to Mayo Clinic; were you given a number to call for the Pediatric Diagnostic Center? They should be able to give you specific answers about the timing of tests on your first visit.

I would also encourage you to look at the Visiting Mayo Clinic group, on Connect, and go through some of the recent discussions, especially this one:
I’m traveling to Rochester, MN from Kansas City, MO: http://mayocl.in/2bCiVB1

I’m tagging some of the members from the group who have been to Mayo Clinic for a variety of conditions, and some who live in Rochester:
@rosemarya, @cynaburst, @audrapopp, @allegro, @HeartPatches, @kdubois, @johnbishop, do you have any insights to share with @sandersmom about getting tests done during the first visit to Mayo?

Here’s a link to the Patient Visitor Guide, http://mayocl.in/1WNWwje, which has a lot of information, too.

You are in good hands, and we wish you and your daughter the very best. Please keep us updated, and let us know how things go.

@sandersmom

Thank you for your feedback, I have been driving myself crazy looking online. We have an appointment with the Pediatric Diagnostic Center at the Mayo on Weds. My daughter is petrified of Dr’s so I am hoping it won’t be to overwhelming for her. Does anyone know if I should just plan to be there for a couple of hours, the whole day or if I should make arrangements to spend the night. Will they do tests on her that day? What can I expect the at the first diagnostic appointment? Will we have to come back the next day? I just hope we are not going to be told that her bloodwork is normal and they do not know what it is. She can be fine and then the next minute she is nauseated and curled up in a ball. All she wants to do is lay in her bed and has no energy to do a lot and the headaches that she is constantly getting worries me. My pediatrician did run the celiac test but that came back negative. I also notice she will be walking at times and her knee will give out or buckle, I hope the tumor that they found on her hip is not causing this. I plan to maybe take her to a movie while in Rochester or do something fun with her. So if you have any ideas that my husband and I can do with my daughter I would love to hear.

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@sandersmom, thank you for the reply. I know this can be a very stressful time not knowing what to expect. Mayo Clinic provides free Concierge Services to help answer questions about what you might expect during your visit. They can provide free information and guidance with travel, lodging, tourism and community resources. I’m also tagging Chelsea (@clockrem12) from Mayo Clinic Concierge Services who may be able to give you some information on what to expect on your first visit.

Contact form: http://bit.ly/2nM3mr0
Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

Rochester and the surrounding area have a lot of activities that may be fun to take in. I’m sure the Mayo Clinic Concierge can help you and your husband find something fun that you can do with your daughter.

Mayo Clinic has some great videos on YouTube to help visitors to Rochester Mayo Clinic:
http://bit.ly/2o3jvMj

God Bless,
John

@sandersmom

Thank you for your feedback, I have been driving myself crazy looking online. We have an appointment with the Pediatric Diagnostic Center at the Mayo on Weds. My daughter is petrified of Dr’s so I am hoping it won’t be to overwhelming for her. Does anyone know if I should just plan to be there for a couple of hours, the whole day or if I should make arrangements to spend the night. Will they do tests on her that day? What can I expect the at the first diagnostic appointment? Will we have to come back the next day? I just hope we are not going to be told that her bloodwork is normal and they do not know what it is. She can be fine and then the next minute she is nauseated and curled up in a ball. All she wants to do is lay in her bed and has no energy to do a lot and the headaches that she is constantly getting worries me. My pediatrician did run the celiac test but that came back negative. I also notice she will be walking at times and her knee will give out or buckle, I hope the tumor that they found on her hip is not causing this. I plan to maybe take her to a movie while in Rochester or do something fun with her. So if you have any ideas that my husband and I can do with my daughter I would love to hear.

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Mayo will doubtless do lots of tests on your daughter so you need to plan to stay. The doctors often do tests on the first day. They are very efficient at the clinic. Blood tests often need to be a fasting test so that will probably be the next day. Be sure to check with the concierge for activities but I don’t think you will have that much free time. Several tests are usually scheduled for each day. There are many places to stay in Rochester from the very expensive to the very reasonable so don’t worry about that.
The doctors there are so kind and will probably put your daughter at ease. Good luck to you. The doctors there work as a team so you may go to lots of departments. Everyone at Mayo seem to be exceedingly polite and caring. Good luck-I am fairly certain the doctors will get to the problem!

Hi @kanaazpereira I did not get a phone number to call, but in the letter confirming my appointment it said I would receive a schedule when I arrive. Just trying to talk to my daughter about going to the Dr. has been horrible. She cries and pleads with me not to make her go. We are going over spring break so I I am want to try and do something that she will enjoy and hope that the staff will ease her fears.

Thank you for your reply.

@sandersmom

Hi @kanaazpereira I did not get a phone number to call, but in the letter confirming my appointment it said I would receive a schedule when I arrive. Just trying to talk to my daughter about going to the Dr. has been horrible. She cries and pleads with me not to make her go. We are going over spring break so I I am want to try and do something that she will enjoy and hope that the staff will ease her fears.

Thank you for your reply.

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No worries! You will be blown away by the information and tests ordered right away. There is no experience you can draw from only experiencing regular health appointments. This is going to feel like a cloud of peace envelopes you. I am excited for you!! An answer is on it’s way!!!

Hi @sandersmom,

I’d like to introduce you to Chelsea, @clockrem12, from Mayo Clinic Concierge Services.

Mayo Clinic in Rochester has Concierge Services to help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit; and it’s free.

Contact form: http://bit.ly/2nM3mr0
Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

Feel free to ask Chelsea any questions you might have about these services.

I’d also encourage you to view some of the videos in the About Kids & Teens group; here are 3 that might interest you and your daughter:

#AsktheMayoMom about IBD in Children: http://mayocl.in/2nYjuFU
#AsktheMayoMom about Pediatric Gastroenterology: http://mayocl.in/2phNaOK
Video Tour of Pediatric Pain Rehabilitation Center (PPRC): http://mayocl.in/1XuVAiX

@sandersmom

Thank you for your feedback, I have been driving myself crazy looking online. We have an appointment with the Pediatric Diagnostic Center at the Mayo on Weds. My daughter is petrified of Dr’s so I am hoping it won’t be to overwhelming for her. Does anyone know if I should just plan to be there for a couple of hours, the whole day or if I should make arrangements to spend the night. Will they do tests on her that day? What can I expect the at the first diagnostic appointment? Will we have to come back the next day? I just hope we are not going to be told that her bloodwork is normal and they do not know what it is. She can be fine and then the next minute she is nauseated and curled up in a ball. All she wants to do is lay in her bed and has no energy to do a lot and the headaches that she is constantly getting worries me. My pediatrician did run the celiac test but that came back negative. I also notice she will be walking at times and her knee will give out or buckle, I hope the tumor that they found on her hip is not causing this. I plan to maybe take her to a movie while in Rochester or do something fun with her. So if you have any ideas that my husband and I can do with my daughter I would love to hear.

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Hi @sandersmom, I am a Mayo Clinic patient, and based on the successes I have experienced with Mayo since 09/2015, I plan on bringing one of my daughters to Mayo for a week within the next year or two for evaluation for several things. My daughter is nervous as well, but in realizing that they saved my life, in addition to returning quality of life to me, she knows that this is the best thing to do. As an aside, some of my doctors also treat children, and they are wonderful, calming people who have always made me feel comfortable.

At your daughter’s initial appointment, they will do a thorough review with you and her, and at that time, they will also ask how long you are there. At that time, they will schedule specialist appointments, and they will also schedule as many tests and appointments as they can fit in during the timeframe you are there. Testing, whether lab or imaging, is all at the main Mayo campus, and they have the bandwidth to schedule tests very quickly. (There’s no waiting for weeks and then driving all over the place to get to appointments like most of us are used to at home.)

For things to do…
• Be sure to walk around the first floor of the Mayo building. There’s a museum with a small theatre in there. And if you can, stop by every floor of the Gonda Building, which has one side that’s glass. There’s a lot of artwork near the elevators and along the glass sidewall of the building on every floor.
• There’s a small mall very close to the Mayo/Gonda buildings that you can walk to. Walk on the Peace Plaza to the Shops at University Square. There are a few restaurants in there, gift shops, clothing shops, and there’s a fancy chocolate shop in there, too.
• There’s also another mall called the Apache Mall that runs a shuttle all day between the hotels. (It’s not as large as the malls I’m used to at home, but it’s definitely more like a normal mall.) My favorite store in there is one that sells a bunch of kites.
• For movie theaters, there’s a large multi-theatre complex near Super-Target and Lowe’s just off of the main drag between Mayo and the airport. From Mayo Clinic, if you drive south on South Broadway, go past Soldiers Field on the right, keep driving past Walmart and Kohls on the left, and the road automatically turns into an expressway. Keep driving until you see the car dealers, Target, Lowe’s, etc. on the left, and McDonalds up to the right, and get off at that exit. At the light at the top of the exit, take a left, and drive through a couple of lights. You’ll see the entrance to this huge retail area on the left, and that’s where you enter. I believe the theatre is called Galaxy 14 Cinema.

@sandersmom

Thank you for your feedback, I have been driving myself crazy looking online. We have an appointment with the Pediatric Diagnostic Center at the Mayo on Weds. My daughter is petrified of Dr’s so I am hoping it won’t be to overwhelming for her. Does anyone know if I should just plan to be there for a couple of hours, the whole day or if I should make arrangements to spend the night. Will they do tests on her that day? What can I expect the at the first diagnostic appointment? Will we have to come back the next day? I just hope we are not going to be told that her bloodwork is normal and they do not know what it is. She can be fine and then the next minute she is nauseated and curled up in a ball. All she wants to do is lay in her bed and has no energy to do a lot and the headaches that she is constantly getting worries me. My pediatrician did run the celiac test but that came back negative. I also notice she will be walking at times and her knee will give out or buckle, I hope the tumor that they found on her hip is not causing this. I plan to maybe take her to a movie while in Rochester or do something fun with her. So if you have any ideas that my husband and I can do with my daughter I would love to hear.

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@sandersmom, I will add one thing to @kdubois‘s excellent response. In addition to scheduling your daughter’s tests very efficiently, they have the results almost immediately. This sometimes leads to schedule changes as the day progresses. Do not worry about this, they will direct you every step of the way.
The environment is beautiful. And the buildings are easy to navigate with helpers everywhere.
Rosemary

@kanaazpereira

Hi @sandersmom,

I’d like to introduce you to Chelsea, @clockrem12, from Mayo Clinic Concierge Services.

Mayo Clinic in Rochester has Concierge Services to help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit; and it’s free.

Contact form: http://bit.ly/2nM3mr0
Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

Feel free to ask Chelsea any questions you might have about these services.

I’d also encourage you to view some of the videos in the About Kids & Teens group; here are 3 that might interest you and your daughter:

#AsktheMayoMom about IBD in Children: http://mayocl.in/2nYjuFU
#AsktheMayoMom about Pediatric Gastroenterology: http://mayocl.in/2phNaOK
Video Tour of Pediatric Pain Rehabilitation Center (PPRC): http://mayocl.in/1XuVAiX

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Hi @sandersmom! I am happy to answer any questions you might have!

HI @sandersmom. I hope you were able to get some answers during your visit. I also hope you enjoyed Rochester. It is a little late but I was going to mention the Rochester Children’s Museum as another place to visit while you are here. Best of luck.

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