Chronic vomiting, diarrhea, stomach pain in kids

Posted by concerned mtn. mom @concernedmtnmom, Jan 16, 2012

My daughter is 10 and has four main symptoms, all chronic: nausea, vomiting, diarrhea, pain in left abdomen. Started w/severe diarrhea 3 mos. ago. We did blood tests for parasites, bacteria, wheat allergy, CBC, celiac, dairy allergy. All negative. Didn’t get better, went to a GI specialist at the children’s hosp. Same tests plus a viral panel showed nothing. Since we have Crohn’s and colitis in the fam, they did an endoscopy and colonoscopy with biopsies. Everything negative; they definitively ruled out Crohn’s, colitis, celiac. After these biopsies the diarrhea got better but has since gotten quite severe. Making things worse, she started vomiting after these tests, along with nausea, sometimes severe vomiting episodes (2 hr. long spells). She is skinny and holding her weight, but barely—she should be gaining. GI doc pretty much “broke up” with us (that’s what it felt like) and was surprised when our pediatrician called to say she was not getting better. She made an appt. to see us 3 wks later. Meanwhile, my daughter is sick as a dog! So we got an MRI of her brain to see if it’s “abdominal migraines/cyclic vomiting.” MRI showed no cancer or tumors or bleeding or infections—thank God. Neurologist followup appt determined she has no neurological problems. They ruled out cyclic vomiting (she’s never had a normal spell w/o vomiting) and may want to followup with an EEG to look for autonomic nervous system dysfunction. We did an upper GI with a barium swallow test (small intest. follow-thru) and that was normal, so still no answers. That’s where we are…waiting to see the GI again. So sad and frustrated. She has missed two and a half mos. of school and counting. She has never been constipated or had bloating or gas. Lots of sharp pains across belly and in the left corner. They also ruled out h. pylori but said she has GERD and some esophagitis as a result but the Prilosec has taken forever to kick in. Any ideas or similar stories? We can find nothing on Mayo site or elsewhere to rule in any possible diagnoses.

Liked by ellep99

I feel we have the same thing happened. My soon is 11yrs old and has had tummy issues for years. Recently they have gotten worse he’s now Nauseous throwing out which neither one of those things actually help stomach pain. When I give him and then I said hey says it helps but only for a little while and it bothers him so much that he comes home from school early and doesn’t go to school and I’m not sure what to do they give him an H pylori test and unfortunately I haven’t gotten the results back yet I am hoping to see what else they can do for him let me know what happens with your daughter

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Hi, @julie1073 – wanted to welcome you to Mayo Clinic Connect. I'm sorry to hear about your son and his tummy issues.

Hoping some of the members in this discussion will return and share some of their experiences with tummy issues in their children. I also wanted you to meet some other members on Mayo Clinic Connect who have talked about issues with nausea, throwing up, stomach pain or other gastric issues. Please meet @claudiabrende @goldenmummy @kozlo52 @beckyjohnson and @travelgirl, who may have some thoughts for you as you try to work with his symptoms and find a diagnosis with his doctor.

This Mayo Clinic information on H. pylori may be of interest to you as you investigate that possibility: https://www.mayoclinic.org/diseases-conditions/h-pylori/symptoms-causes/syc-20356171

When will you know about the results of the H. pylori test for your son, @julie1073?

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My daughter is experiencing the same symptoms. I felt that I could have written this narrative. We have had blood work, scans, and scopes. Things have been ruled out but no diagnosis. Did you find any resolution?

We just recently moved across country so now I feel as though we have to start all over. In two weeks of school, she has missed 2 days and willed herself through several more days.

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@txmom33 @julie1073 , I wrote this post 5 years ago and here's what we learned after 2 yrs of misery. It was C. difficile (see the chat boards here about this diagnosis, as well as the listing on the main Mayo site), but we had gotten two false negatives on the first tests, so we went many months with bad information. In the meantime she ended up on feeding tubes. If, after researching this illness, you think you child might need to be tested for that, ask for the Cytotoxin test (a.k.a, the gold standard test for C. diff.). That one is most accurate and I think the only one they use now, but that's the best one. The antibiotics to treat it were no fun and she got reinfected 3 times because those superbugs would not let go. We cured her instantly with a fecal transplant. It's a miracle cure for persistent C. diff.

C. diff. is bad because it builds up toxins in the gut that can eventually affect the sympathetic nervous system. This happened to my daughter and she got a secondary condition of Postural Orthostatic Tachycardia Syndrome, or POTS. This is also known as autonomic nervous system dysfunction. [Ironically, the doctor who suggested it might be a problem never explained to me what it was, so we went another year before we could get in to Mayo (yes, it took a YEAR! I understand they have shorter wait times now) and that's exactly what it was.] You can look up POTS here too, but symptoms are racing heart, nausea, overheating, flushed face, fatigue, fainting.

We also found out at Mayo that she had a fructose intolerance. Fructose is in most fruit and many legumes and some veggies, so we had to learn what to eat. Any sort of simple sugar malabsorption or intolerance can cause tummy/gut trouble and vomiting, so ask your doctor about that.

I know how stressful this is and how much you agonize watching your kid suffer when you can't find answers. Never give up. We were helped by so many strangers who had gone through the same things…look for the helpers. Today my daughter is healthy and strong and we are so grateful. Cured of the C. diff. and she eventually outgrew the POTS. Get to Mayo if you can't figure it out. It's not an easy week, but you get answers from the best.

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@concernedmtnmom

@txmom33 @julie1073 , I wrote this post 5 years ago and here's what we learned after 2 yrs of misery. It was C. difficile (see the chat boards here about this diagnosis, as well as the listing on the main Mayo site), but we had gotten two false negatives on the first tests, so we went many months with bad information. In the meantime she ended up on feeding tubes. If, after researching this illness, you think you child might need to be tested for that, ask for the Cytotoxin test (a.k.a, the gold standard test for C. diff.). That one is most accurate and I think the only one they use now, but that's the best one. The antibiotics to treat it were no fun and she got reinfected 3 times because those superbugs would not let go. We cured her instantly with a fecal transplant. It's a miracle cure for persistent C. diff.

C. diff. is bad because it builds up toxins in the gut that can eventually affect the sympathetic nervous system. This happened to my daughter and she got a secondary condition of Postural Orthostatic Tachycardia Syndrome, or POTS. This is also known as autonomic nervous system dysfunction. [Ironically, the doctor who suggested it might be a problem never explained to me what it was, so we went another year before we could get in to Mayo (yes, it took a YEAR! I understand they have shorter wait times now) and that's exactly what it was.] You can look up POTS here too, but symptoms are racing heart, nausea, overheating, flushed face, fatigue, fainting.

We also found out at Mayo that she had a fructose intolerance. Fructose is in most fruit and many legumes and some veggies, so we had to learn what to eat. Any sort of simple sugar malabsorption or intolerance can cause tummy/gut trouble and vomiting, so ask your doctor about that.

I know how stressful this is and how much you agonize watching your kid suffer when you can't find answers. Never give up. We were helped by so many strangers who had gone through the same things…look for the helpers. Today my daughter is healthy and strong and we are so grateful. Cured of the C. diff. and she eventually outgrew the POTS. Get to Mayo if you can't figure it out. It's not an easy week, but you get answers from the best.

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I'm curious about everything you did for a diagnosis. I need help desperately for my son. He is now 18 and 101 lbs, diareah, vomits, constant pain cannot eat. He is deteriorating. Colonoscopys, endoscopes, blood work show nothing. Gi dr just yesterday implied its him, in his head and said see a therapist and take probiotic. I'm beside myself. I try everything this boy is suffering, underweight, fatigue, you can look at him and know he is unwell and yes very unhappy which I personally understand he gets no relief, no help. Anything information, direction you can give me I would be appreciative I am not giving up on my son, this is failure to thrive it's very very frightening and I need to get him out of any illness and help him. Thank you

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@tonnie325

I'm curious about everything you did for a diagnosis. I need help desperately for my son. He is now 18 and 101 lbs, diareah, vomits, constant pain cannot eat. He is deteriorating. Colonoscopys, endoscopes, blood work show nothing. Gi dr just yesterday implied its him, in his head and said see a therapist and take probiotic. I'm beside myself. I try everything this boy is suffering, underweight, fatigue, you can look at him and know he is unwell and yes very unhappy which I personally understand he gets no relief, no help. Anything information, direction you can give me I would be appreciative I am not giving up on my son, this is failure to thrive it's very very frightening and I need to get him out of any illness and help him. Thank you

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Have you tried a functional doctor? I am going to call dr O on monday morning to get help with my gut issue. I attended the informational meeting last week at Vitality and I was skeptical but going from doctor to doctor agetting no where has cost me more than money. I’ve been getting progressively worse. But nothing can be found to cause my problems. Here is his mission statement:
“To educate, empower and create the opportunity to restore health for those who are ready for change."
– DR. STEVEN OSTERHOUT
Vitality in Portage Michigan
https://www.yourvitalityhc.com/

Liked by tonnie325

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@tonnie325

I'm curious about everything you did for a diagnosis. I need help desperately for my son. He is now 18 and 101 lbs, diareah, vomits, constant pain cannot eat. He is deteriorating. Colonoscopys, endoscopes, blood work show nothing. Gi dr just yesterday implied its him, in his head and said see a therapist and take probiotic. I'm beside myself. I try everything this boy is suffering, underweight, fatigue, you can look at him and know he is unwell and yes very unhappy which I personally understand he gets no relief, no help. Anything information, direction you can give me I would be appreciative I am not giving up on my son, this is failure to thrive it's very very frightening and I need to get him out of any illness and help him. Thank you

Jump to this post

@tonnie325
Never accept being told that it’s all in the head!
Did they test for food allergies, intolerance or sensitivity? Celiac?

Liked by peabody88, tonnie325

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@tonnie325

I'm curious about everything you did for a diagnosis. I need help desperately for my son. He is now 18 and 101 lbs, diareah, vomits, constant pain cannot eat. He is deteriorating. Colonoscopys, endoscopes, blood work show nothing. Gi dr just yesterday implied its him, in his head and said see a therapist and take probiotic. I'm beside myself. I try everything this boy is suffering, underweight, fatigue, you can look at him and know he is unwell and yes very unhappy which I personally understand he gets no relief, no help. Anything information, direction you can give me I would be appreciative I am not giving up on my son, this is failure to thrive it's very very frightening and I need to get him out of any illness and help him. Thank you

Jump to this post

Hi, @tonnie325, you must never give up–docs who can't diagnose something and then call it a psych problem out of frustration are not docs you need. Some tips: This Mayo site has great information on it, so look up Clostridium difficile and see if the symptoms match his.

The cytotoxin test is the gold standard for detecting C. Difficile. I'm not sure, but all labs should be doing this protocol by now, but if they aren't, you might get a false negative. So research cytotoxin test (they measure cytotoxin A and B) and demand one because it might be C. Diff., given his symptoms. It could also be a FODMAP problem, which stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. These are simple sugars found in all kinds of natural foods and if he has an intolerance, that could make him sick in the GI tract. Celiac disease is easily tested, too.

Maybe you've tried these things, and I'm not a doctor, but getting him to Mayo would be a good call. Because he's 18 you can maybe go to more than one of the Mayo clinics (Rochester or Phoenix, not sure where else they have one). If he's that ill, it's worth getting him in if you can afford the trip. The grand rounds approach at Mayo is what saves people (multiple docs reviewing his case and discussing it). It takes time to get in, so apply today.

I know the fear and frustration you feel. You are not alone. Write me anytime here, I'll respond with any info I can share. Many moms supported me when we were in the dark woods, so here's a little candle. You can do this. I learned it helped to cry on the phone when making appointments. People want to help. Find those who can. You might have to remind them what they signed up for when they took that Hippocratic oath.

Liked by tonnie325

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@concernedmtnmom

Hi, @tonnie325, you must never give up–docs who can't diagnose something and then call it a psych problem out of frustration are not docs you need. Some tips: This Mayo site has great information on it, so look up Clostridium difficile and see if the symptoms match his.

The cytotoxin test is the gold standard for detecting C. Difficile. I'm not sure, but all labs should be doing this protocol by now, but if they aren't, you might get a false negative. So research cytotoxin test (they measure cytotoxin A and B) and demand one because it might be C. Diff., given his symptoms. It could also be a FODMAP problem, which stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. These are simple sugars found in all kinds of natural foods and if he has an intolerance, that could make him sick in the GI tract. Celiac disease is easily tested, too.

Maybe you've tried these things, and I'm not a doctor, but getting him to Mayo would be a good call. Because he's 18 you can maybe go to more than one of the Mayo clinics (Rochester or Phoenix, not sure where else they have one). If he's that ill, it's worth getting him in if you can afford the trip. The grand rounds approach at Mayo is what saves people (multiple docs reviewing his case and discussing it). It takes time to get in, so apply today.

I know the fear and frustration you feel. You are not alone. Write me anytime here, I'll respond with any info I can share. Many moms supported me when we were in the dark woods, so here's a little candle. You can do this. I learned it helped to cry on the phone when making appointments. People want to help. Find those who can. You might have to remind them what they signed up for when they took that Hippocratic oath.

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@astaingegerdm, @numbskull
I've had him tested for celiac, h pylori, he did have a type of fungus in esophagus they had treated, he also has vitiligo. I've also seen an endocrinologist thinking thyroid, nothing although c4 was low/ normal they said not it. The fungus shocked me it implies an immune issue, but his weight loss and pain are really imperative for me. I'll look at everything I truly appreciate the responses and kindness

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Hello all. It has been a long year and we are in search of answers. Our 23 month old son has been sick for almost a full year now. Here is what we have so far. He literally vomits 1 or multiple times a day for months. So far we have switched him off of Vitamin D milk and trying Almond Milk. Still vomiting. He has done a Upper GI swallow test and came back normal, 1 Hospital said he has asthma, Gastro doctor thinks it is GERD and put him on Omeprazol 2 times a day for 30 days. Still vomiting. Went to an ENT and he is thinking it is his adenoids and wants to remove them next month. We did an Allergy test for outdoor allergies. Told us he was to young for Allergy Food testing. His Gastro Doc did blood work but did not tell us for what but said all came back normal. Also Gastro Doc recommended the switch from Vitamin D milk to Almond milk. It seems no matter what he eats now within minutes or an hour he is vomiting it right back. His pediatrician keeps giving us Nausea pills and sending us on our way. Our son literally gets sick randomly day or middle of the night. Sometimes he can be sitting there and just vomit. So far we cannot get any Accurate answers from anyone. Any ideas would greatly be appreciated. We go back to Gastro Doctor in about 3 weeks to try another plan of action. Thank you for your opinion in advance.

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Welcome to Connect, @timandmichelle. You must be so worried! I’m glad you’ve joined us, and you may notice that I moved your message and combined it with this existing discussion. I did this as I thought it would be beneficial for you to be introduced to other members who have discussed much about dealing with similar symptoms in their children.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

While we wait for members to return, here’s some information which I’d sincerely encourage you to read: https://www.medscape.com/viewarticle/711641_3

@timandmichelle, have they ruled out any obstruction or inflammation of the GI tract/tube or any of its buds that may cause vomiting?

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@tonnie325

@astaingegerdm, @numbskull
I've had him tested for celiac, h pylori, he did have a type of fungus in esophagus they had treated, he also has vitiligo. I've also seen an endocrinologist thinking thyroid, nothing although c4 was low/ normal they said not it. The fungus shocked me it implies an immune issue, but his weight loss and pain are really imperative for me. I'll look at everything I truly appreciate the responses and kindness

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Hello @timandmichelle

I read your post and can certainly understand your concern as well as your frustration. How difficult it must be to have a 23 month old who vomits so frequently and not be able to find any answers for the problem.

A few questions come to mind: I'm wondering about his growth. How is his weight? Have his doctors checked him for vitamin deficiency? What about his energy level? Is he able to participate in activities like others his age? Is he seeing a pediatric GI specialist? Are you near a Mayo facility or other multidisciplinary hospital system (like a university medical school) where you could get a second opinion?

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Hello @timandmichelle

You last posted about your son's vomiting problem at the end of the year. Have there been any changes or answers to his problem?

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