Help! I am so confused and extremely frustrated. My 10 year old was diagnosed with type1 in 2022.
Along with this diagnosis came stomach issues. She complains about nausea and stomach pain only with liquids. I took her to doctor and they did a test where they said her stomach was emptying very slow. I thought it was gastroperisis but her endo said considering that she was just diagnosed, she didn’t think that was the cause. She referred us to a pediatric gastroenterologist and they did an upper endoscopy and biopsy.
The results showed chronic inactive gastritis. Okay, they prescribed her omeprezole. That did not work. Went back and now they prescribed her cyrohepdedine, which has also done nothing!
This has been 2 years and nothing has gotten better. I have to MAKE her drink liquids because she can’t stand to always be nauseous. We have zofran on hand but I want to find out what is causing all of this instead of treating the symptoms! She has had to get iv fluids multiple times and almost went into dka once when she got sick and couldn’t take fluids. We are just getting by and she is slipping into a depression because she says she is tired of the nausea and stomach pain. Also last ER visits her sodium was low and her face was puffy. Her endo appt is Wednesday. What can I demand because I feel like no doctor is taking this seriously. I need her to feel better.
We can deal with type 1 but it is the unknown gastro problems sprinkled in that make control harder by her not being able to stay hydrated without being sick
I feel for you. No one wants to feel sick all the time and I can see especially as a kid not wanting to drink because it doesn’t make them feel good. It’s weird it’s just liquids?? Is there something similar about the liquids that are making her nauseated? I know someone that was allergic to red items, someone else that is allergic to anything considered a hotter spice like chili, but it also included smoked paprika which doesn’t seem hot at all. Some relation I guess. Allergies can be very weird and liquids usually go through the stomach faster. So maybe cold is hitting the intestines and causing them to spasm??? Just try to figure a pattern. All the alcohol sugars that diabetics sometimes love can cause nausea too. And we are all different and can have a different reaction to foods. Generally liquids dilute enzymes used to digest food. I remember being told once, it’s best not to have liquids with meals. Another old time natural doctor used to say hold liquids in your mouth for a while to make sure you start the digestion process before swallowing. I’m not at all sure whether that will help but probably worth a try.
With DKA as a possible issue, I’m not sure this will work well but what about fruit maybe blended, it would have some liquid, she would have to dose for it but? If cold doesn’t bother her, Blending frozen fruit in the blender, fruit not frozen with ice could help. although cold feels like it could bother her more but you just can’t tell. Maybe oat milk? Coconut water? Room temperature, slightly warm? Liquid with crackers in it, I used to have a dobie that had a major stomach issue that one of the only things she would voluntarily eat when her stomach was acting up was vegan blueberry muffins with agave that I had a baker make. Try and see if totally different food/liquids always bother her.
Sometimes you have to be a nuisance to get the help you need. Unfortunate but… I know you tried a pediatric gastro, maybe try another one and say up front my child is getting depressed, which unfortunately type 1’s are prone too. Get a second opinion, I am also wondering if you search out a children’s hospital, people in the past have said that makes a difference.
Doctors are not always right or have the same experience. So you have to find one that figures it out. I had customers in the past at my store that tried many doctors before they found one that figured it out. I know someone that took their mother to an outside specialist and went back to his group and said this is what is wrong with my mom and she needs to get surgery approved for this doctor and they said they had a doctor that specialized in that. But not one of the doctors his mom saw in the group recognized what the problem was, no less they had a specialist.
So you have to be persistent sometimes. Aggravating and it can wear you down. But just remember it’s your daughter and the squeaky wheel type thing.
I hope you find an answer. Hugs.
I’m afraid I don’t have much to add, but I would underline Marie’s point. My mantra is “calm persistence.” Try to mask the emotions you’re legitimately feeling while you simply won’t be worn down into agreeing to just going along with a situation that’s wrong. A children’s hospital also sounds good if that’s practical.
Finally, if possible, get help addressing the emotions. Her difficulties are certainly physical in origin but that doesn’t mean learning to deal with the emotions isn’t important. A good therapist could also be a guide to dealing with the incredible frustrations of dealing with medical doctors.
Are soups or broth an option?
Hi @ChloesMom. That sounds extremely similar to what my 16 yr-old granddaughter—NOT a diabetic—has been dealing with for years. She went through all of the rigmarole trying to get it diagnosed–sounds very similar, including the difficulty getting it taken seriously. To the point where she habitually carries a bucket around with her in case she feels she’s going to throw up.
Here’s the hopeful thing: they tried her on cyproheptadine a couple years back with no improvement. But at the time there were a lot of distractions in their lives and they may not have been consistent enough with it. Just in the last 6 months they started seeing a new gastro specialist who said you really need to give it some time, like 2-3 weeks. So they’ve had another go and it IS working. She’s also taking Omeprazole just to reduce stomach acid/reflux, but the cyproheptadine is the thing that finally seems to be working.
Our understanding is that this is a known condition for girls in their adolescence but it gets confused with other conditions (anorexia, even T1) or dismissed as stress/anxiety/emotion because the symptoms can seem so subjective. Apparently it’s actually neurological in origin, something about crossed fulness/hunger signals from the brain to the stomach getting screwed up, which the brain interprets as nausea. Becomes a kind of neurological habit or whatever the right way is to put that. The cyproheptadine seems to ameliorate the neurological thing and the brain can stop signaling “something’s wrong here!” which feels like “sick to my stomach” and may even produce vomiting just as a reaction. Oddly, cyproheptadine is actually a powerful antihistamine*, which I think of as being all about inflammatory issues, but apparently it has other uses as well.
Anyway, takeaways are that it’s not actually T1 related though sometimes confused with it (and interferes with managing it), and that in our case at least the cyproheptadine actually works but you have to give it some time, maybe more than you’d expect.
This was really distressing for my granddaughter for a LONG time, screwing with her school and social life, so you have my sympathy for what you’re going through. Best of luck–please do circle back and let us know how it’s going.
*Edit to add: being an antihistamine, there is a sleepiness side effect, which may be what put her off the first time before they gave it long enough. That effect does seem to fade with acclimation. It’s also a reason why they start with a relatively light dose to see if it’s having any effect and then step it up if it seems to be working. So that’s a factor as well.
Thank you!! Great ideas and advice. I will try all of this while we wait for answers. The vegan blueberry muffins sound great. I will try to narrow down what is causing the trouble. Being so overwhelmed, it’s hard to think in the moment. Thank you so much again 
So glad someone else understands this situation! And thanks so much for the advice. We will definitely give the cyprohepdidine another try. We had stopped because we felt it was doing nothing, but we only tried a week. 
we are going to start back tonight and hope this is our answer. Type 1 plus this is absolutely not fun!
Great idea! She is picky but I’m sure I can find something she likes to stay hydrated.
Also do you think the cyprohepdedine heals the problem after a time or will she have to take it long term?
That’s a good question I don’t know the answer to. My impression is that it’s one of those neurological “learned behavior” things, and the medication interrupts the pattern so it can gradually reset. But that may be more of a hope than an empirical finding. Good question for your gastro appt today—hope you’ll check back in and let us know what you learn.
As far as hydration, fruits with lots of juice can work. A summer job I had was hard to have water bottles, I’d put grapes in my egg salad sandwhich. Worked and tested great! Oranges, watermellon and peaches come to mind.
bG effects can vary. Fiber in fruit can mitigate spikes for some.
Will try this! Thanks!
Sorry for what she’s going through. I have had diabetes for 52 years. I also had lymphoma 20 years ago. I am always on a search for the best doctors and the best natural medicine as a compliment. I have found that when traditional western doctors cannot figure me out, that the naturalpathic doctors who do muscle testing usually get to the source. Find a doctor who does muscle testing. Sometimes it’s at a chiropractor office. Mine is.
Thank you! Will look into this too
A sick child drives one crazy. Do you live near a Mayo Clinic or John Hopkins? Both well known for diagnosing difficult illnesses. Meanwhile - consider hypnosis, making your own popsicles in flavors your daughter likes (use Stevia or other noncaloric sweeteners). Try Ginger Beer - the ginger is calming. Best of luck1
@ChloesMom You can do muscle testing yourself. You can test foods, supplements and areas of the body. It can sometimes provide information that’s useful. Plenty of videos online. Don’t overdo it each time as the muscle naturally becomes weaker.
Just to leave no stone unturned, have her tested for Lyme disease.
John
It seems unlikely that this is diabetes related, as complications can take years to develop. It could be caused by a neurological condition, and you perhaps should consult a neurologist. Mention to her care team if she has had any viral infections, or any falls or sports injuries. Lyme testing is a good idea.
The big problem in tracking down something like this is finding a doc who is curious and smart. I echo what someone mentioned above, and go to a University medical clinic. But again, you need a doc who will take the time to do a thorough exam and history, and is curious to pursue the issue. Be a very strong, vocal, advocate for her. On this I can speak from experience.
Mike
Not sure what your thoughts are on going natural route but Dr. Axe is someone I have follow and trust. Maybe something to look into: