Veritaserum Posted January 31, 2017 Share Posted January 31, 2017 This time all the kids got a stomach bug. She got it first (ten days ago) and she's still puking. The other kids were done after two days. I called the pediatric GI office to let them know and they scheduled her for a scope, but the earliest date they have is the end of March! I wish they had scheduled her for a scope when we met with the doctor in November if they're booked that far out. Ugh. Actually, I wish she'd been seen by pediatric GI when she was admitted to the hospital so that the scope could have happened then. She attempted school this morning since she's back to the pattern of mostly being sick between 4pm and 7am. I gave her Zofran before she left. She threw up at school and called me to come get her. We are going for a blood test later because the pediatric GI wants to check if she has the Epstein-Barr virus. When I spoke to the GI nurse yesterday, she said to talk to our primary care doctor about management between now and the scope. I feel like we've exhausted our options there. Phenergan, Zofran, and compazine are all ineffective. I guess I should call and make and appointment in case anyone has new ideas, but this hasn't responded to any treatment. The longest break she got in October was after IV doses of compazine, toradol, and Benadryl. She didn't vomit for four days after that. Then it started up again. I'm so frustrated and dd is miserable. Neurologically everything checks out 100% normal. This is a GI issue. Any other ideas of medications or anything that might give her some relief? Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 31, 2017 Share Posted January 31, 2017 Remind me, have you tried any of the anti-migraine drugs like amitryptaline? Some studies have tied cyclic vomiting to quasi-abdominal migraines. Quote Link to comment Share on other sites More sharing options...
egao_gakari Posted January 31, 2017 Share Posted January 31, 2017 I had similar-sounding tummy issues as a kid. Any bug that a normal kid gets over in 2 days, I was down for weeks. I finally was diagnosed with an H. pylori infection (the bacterium that causes ulcers) at 9, but continued being seriously ill, clearly compromised immune system, through my teenage years. In college, I got a diagnosis of celiac disease, went gluten-free, and have barely been sick since. It took them forever to diagnose me with both illnesses because they presented abnormally--nausea/vomiting rather than pain for the H. pylori, nausea/vomiting rather than lower abdominal issues for the celiac. It's good you've got a scope scheduled, as that will make things clearer. They never scoped me until the celiac diagnosis. I'm so sorry Zofran and Phenergan aren't working. They always worked for me, so I don't really know what to recommend medicine-wise. Soothing natural remedy-wise, ginger and peppermint tea work well for me. I still sometimes have sudden attacks of nausea (unknown source), and strong breath mints sometimes work to stop it. Identifying triggers can also be helpful. I ate and drank mostly warm things--cold things could trigger nausea. I also cut out rich/fatty foods for a while, because I always got sick after eating them. I remember my mom keeping a journal of my food, my sleep, my exercise, everything she could think of that might possibly be related. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted January 31, 2017 Author Share Posted January 31, 2017 We haven't tried that. At a neurologist visit in late October he said we might try Cyproheptadine (antihistamine). He didn't think it was any type of migraine or neurological issue, though, and referred us to GI. I'll look at cyclic vomiting again. It didn't seem to fit back in October. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted January 31, 2017 Share Posted January 31, 2017 Have you tried an elimination diet? My dad had a coworker who needed to carry a bag to vomit into around with her all day at work. Eventually she was diagnosed with...you guessed it...celiac disease. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted January 31, 2017 Share Posted January 31, 2017 (hugs) Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted January 31, 2017 Author Share Posted January 31, 2017 Her PCP checked celiac antibodies in October as well as H. Pylori. Both were negative. Can it take time for antibodies to show up? I'll have her keep a food journal again. I gave her a tin of Altoids this morning. From what I understand, we shouldn't do elimination type diets until after the scope. Quote Link to comment Share on other sites More sharing options...
Lang Syne Boardie Posted January 31, 2017 Share Posted January 31, 2017 The antibody screen can miss celiac. If you need to try a GF diet, or elimination diet (better) for immediate relief from suffering, you can still get the scope later if you need it confirmed by a doctor. What you would do is build up to a certain level of gluten, back into the diet, leading up to the scope. You need sufficient damage to the villi. They used to say a bagel's worth of wheat every day for a month. Of course, if she got better on the elimination diet, and then got very sick again after reintroducing gluten, you might have to abandon the project. This happened to one of my sons. He had a very slight positive antibody test, but then when we had to "up' the gluten to prepare for the scope, his chronic diarrhea became so debilitating that I called the doctor after two weeks and canceled the scope. He said we knew all we needed to know by the gluten trial and the scope was no longer necessary or recommended - just cancel the gluten. Son was fine again, within two days. Just me, having been there with extreme GI issues, I would do the elimination diet. I wouldn't keep waiting for expert answers. Thousands of celiac patients have had to figure it out on their own. If celiac is what it is, the relief will be SO fast. If there's no relief from the trial, then it won't matter if you resume gluten and do a scope later. 4 Quote Link to comment Share on other sites More sharing options...
CadenceSophia Posted January 31, 2017 Share Posted January 31, 2017 I hate saying this.. Like seriously .. But if you change her diet now and it works, she may never get a diagnosis. Celiac is an autoimmune disease which can't be dx'd when it is not active. You can't guarantee to reactivate it by gluten trial at a specific time. If you don't know for sure that it is celiac, it is easy to develop a life long pattern of cheating a little bit here and there without realizing how badly you are damaging your body. That might be ok with you and with her, but it can also be hard. On the other hand, you might put off dietary changes until March and have the scope still show nothing, or show something not food related anyway. It is a really tough call. If it is going to be a food related something though, my bet is with EGID, not celiac although they can be co-morbid. Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted January 31, 2017 Share Posted January 31, 2017 You're probably already on the cancellation list for the scope, but if not, get on it. If you don't mind being annoying, you can try calling a lot to see if anyone has cancelled. I got lucky with an out-of-town appointment by calling just after someone had cancelled (and I was able to do a same-day appointment even driving from out of town.) Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted January 31, 2017 Author Share Posted January 31, 2017 She's on the cancelation list, but it might be just for the hospital nearest us. This doctor does scopes in multiple locations. I'll call to make sure she's on the list for the others. I don't mind driving an hour for this test if she can get it done sooner. She doesn't fit the typical presentation of Cyclic Vomiting Disorder, but I still wonder if this protocol might be helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/ Quote Link to comment Share on other sites More sharing options...
Jenn in FL Posted January 31, 2017 Share Posted January 31, 2017 (edited) Nooooo, not again. :grouphug: :grouphug: :grouphug: For the short term, have you tried using "Sea-Bands" yet? Some literature seems to support their effectiveness. They might be worth a shot while you are waiting for the scope. Also, have you tried calling and asking/begging to be put on the cancellation list? People cancel all the time...I would try to stress the fact that she is a peds patient and actively vomiting daily. As a nurse, I agree that starting the elimination diet now could potentially skew the test results. You are an awesome Momma! :grouphug: :grouphug: :grouphug: LOL: I started replying and then took a call from one of my kiddos! I "see" you are on the cx list already! :hurray: Edited January 31, 2017 by Jenn in FL Quote Link to comment Share on other sites More sharing options...
Scarlett Posted January 31, 2017 Share Posted January 31, 2017 My niece was deathly ill and undiagnosed until her late 20s with Celiac. She was finally hospitalized and nearly died. It was very scary. I am a little skeptical about so much gluten sensitivity but wow, she made a believer out of me about being not sensitive but allergic. She is fine now. But she doesn't mess around with it. She will carry a can of beans and some corn tortillas around with her if she isn't sure of the food she will be offered. I hope your dd gets answers soon. I would pester the scope center daily for cancellations. And if she ends up back in the hospital make sure they scope her then. Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted January 31, 2017 Share Posted January 31, 2017 (edited) Her PCP checked celiac antibodies in October as well as H. Pylori. Both were negative. Can it take time for antibodies to show up?I read somewhere once or twice that it takes on 11 years of illness before average celiacs are diagnosed. A blood antibody test has many false negatives. Did they test her total serum IgA levels? Many people don't make enough antibodies overall to have enough available to show up as anti-gluten or antibodies. In other words, an IgA deficiency will make someone appear as not celiac via blood test when they may have it. Also, people can have Non-Celiac Gluten Sensitivity or other wheat protein intolerances that won't show up on a celiac panel. Many people (like me) also have problems with dairy as well. Edited January 31, 2017 by HoppyTheToad 2 Quote Link to comment Share on other sites More sharing options...
frugalmamatx Posted January 31, 2017 Share Posted January 31, 2017 Is there any way for your doctor to push for her to have the scope now, due to the reoccurring symptoms without apparent cause? In March whatever is causing it might be dormant again, and then the scope would possibly show nothing. It makes sense to me that she should be scoped while actively having symptoms. I also echo everyone else - call for cancellations. Have you checked other possible clinics outside of the practice? Maybe if you drove to a children's hospital they would be able to get you in and send the results back. 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted January 31, 2017 Share Posted January 31, 2017 I'm so sorry your daughter is sick. Make the appointment. Then call every day at every potential location, looking for a cancellation. Be really sweet about it and quick, but relentless in making the calls. 1 Quote Link to comment Share on other sites More sharing options...
Random Posted January 31, 2017 Share Posted January 31, 2017 (edited) I didn't see your previous post about this, so forgive me if I'm way off topic here. Have you done long-term stool 7 urine collections (like a 24 hour catch)? Has your PCP investigated the possibility of things like Giardia or other parasitic infections? Lysteria? Also, I'm assuming you've investigated eosinophilic esophagitis? https://www.cincinnatichildrens.org/health/e/eosinophilic-esophagitis-ee Celiac is worth investigating, for sure. There is some data suggesting that Celiac can be triggered by other illnesses and infections, as well, and can come on fast & strong. What a difficult situation! :grouphug: My son had Giardia as an 18 month old, and was sick for months with puking, diarrhea, hives, etc. It was awful! The only things that helped him were 'old school' remedies like ginger, 7-up, benedryl, peppermint candies, lemon candies, etc. These little things seemed to calm him down enough so that he could mentally handle the nausea. Edited January 31, 2017 by Random Quote Link to comment Share on other sites More sharing options...
Nemom Posted January 31, 2017 Share Posted January 31, 2017 Look into a disease called Eosinophilic Esophagitis (EoE). Apfed.org http://apfed.org/about-ead/egids/ or https://www.cincinnatichildrens.org/service/c/eosinophilic-disorders Oops..I see Random beat me to it. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 31, 2017 Share Posted January 31, 2017 She's on the cancelation list, but it might be just for the hospital nearest us. This doctor does scopes in multiple locations. I'll call to make sure she's on the list for the others. I don't mind driving an hour for this test if she can get it done sooner. She doesn't fit the typical presentation of Cyclic Vomiting Disorder, but I still wonder if this protocol might be helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163531/ I'd print off the study and keep it on hand for discussion after the scope. I would explore all of the avenues at this point--and push hard for doctors to move quickly. Also, my rheumy advised eating at least 2 pieces of bread a day for a few weeks before testing to get my gut good and angry if I had celiac disease. The blood work is decent, but the scope is the gold standard. There are people who pass the celiac blood test but fail the scope. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted January 31, 2017 Author Share Posted January 31, 2017 Is there any way for your doctor to push for her to have the scope now, due to the reoccurring symptoms without apparent cause? In March whatever is causing it might be dormant again, and then the scope would possibly show nothing. It makes sense to me that she should be scoped while actively having symptoms. I also echo everyone else - call for cancellations. Have you checked other possible clinics outside of the practice? Maybe if you drove to a children's hospital they would be able to get you in and send the results back. She spent three days at the children's hospital in October. They misdiagnosed her with migraines and referred us to outpatient neurology. The outpatient neurologist was a much better listener and confirmed my gut that it's not migraine. He referred us to GI. The night pediatrician we saw when we first were admitted into the hospital thought we should investigate neurology and gastroenterology, but we only ever saw a neurology team. They were unwilling to consider any possibility other than migraine once the imaging was clear and they heard I get migraines. I wish we'd gotten a GI consultation while she was there. They sent a behavioral health team instead and tried to categorize her symptoms as a psychological issue. I was very frustrated with the whole experience. When I called their outpatient clinic to set up the neurology follow-up their in patient team recommended, they weren't even accepting appointments. The same was true of their GI clinic. No appoints available. They eventually called me back a month later, but I'd already gotten dd into another clinic with our PCP's help. No one at any point has been particularly bothered by her continued vomiting. It's been more of a, "huh, that's strange." But since she hasn't lost weight and she's not dehydrated, they don't feel like it's urgent despite its disruption to her daily life. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted January 31, 2017 Author Share Posted January 31, 2017 I didn't see your previous post about this, so forgive me if I'm way off topic here. Have you done long-term stool 7 urine collections (like a 24 hour catch)? Has your PCP investigated the possibility of things like Giardia or other parasitic infections? Lysteria? Also, I'm assuming you've investigated eosinophilic esophagitis? https://www.cincinnatichildrens.org/health/e/eosinophilic-esophagitis-ee Celiac is worth investigating, for sure. There is some data suggesting that Celiac can be triggered by other illnesses and infections, as well, and can come on fast & strong. What a difficult situation! :grouphug: My son had Giardia as an 18 month old, and was sick for months with puking, diarrhea, hives, etc. It was awful! The only things that helped him were 'old school' remedies like ginger, 7-up, benedryl, peppermint candies, lemon candies, etc. These little things seemed to calm him down enough so that he could mentally handle the nausea. They did urine samples the three times we went to the emergency room. We also did one at the doctor's office. One of the ER cultures grew so they said she had a bladder infection (no symptoms at all, but we did a round of antibiotics). Her PCP did a bunch of blood work, but I don't remember everything we tested for. We didn't do a 24-study of any kind. I'll call our family clinic and book an appointment to go over options for further investigation. Quote Link to comment Share on other sites More sharing options...
MooCow Posted February 1, 2017 Share Posted February 1, 2017 I'm so sorry to hear your daughter is sick again. :( I don't have any advice, just wanted you to know I've put her back in my daily prayers. Quote Link to comment Share on other sites More sharing options...
CadenceSophia Posted February 1, 2017 Share Posted February 1, 2017 My niece was deathly ill and undiagnosed until her late 20s with Celiac. She was finally hospitalized and nearly died. It was very scary. I am a little skeptical about so much gluten sensitivity but wow, she made a believer out of me about being not sensitive but allergic. She is fine now. But she doesn't mess around with it. She will carry a can of beans and some corn tortillas around with her if she isn't sure of the food she will be offered. I hope your dd gets answers soon. I would pester the scope center daily for cancellations. And if she ends up back in the hospital make sure they scope her then. Just to clarify, celiac is an autoimmune disease not an allergy. It is also possible be wheat allergic, but that is a different type of immune reaction. Quote Link to comment Share on other sites More sharing options...
Pippen Posted February 1, 2017 Share Posted February 1, 2017 Look into a disease called Eosinophilic Esophagitis (EoE). Apfed.org http://apfed.org/about-ead/egids/ or https://www.cincinnatichildrens.org/service/c/eosinophilic-disorders Oops..I see Random beat me to it. I was going to suggest this as well. A child we know was diagnosed, but they went through many doctors and finally Cleveland Clinic nailed it down. If this continues, would you consider going to one of the bigger research hospitals such as Cleveland or Mayo? Quote Link to comment Share on other sites More sharing options...
Scarlett Posted February 1, 2017 Share Posted February 1, 2017 Just to clarify, celiac is an autoimmune disease not an allergy. It is also possible be wheat allergic, but that is a different type of immune reaction. Oh. I am not sure I realized it is autoimmune.,,,,,,,wow. Ok, so if she eats any glutton she gets deathly ill. Quote Link to comment Share on other sites More sharing options...
CadenceSophia Posted February 1, 2017 Share Posted February 1, 2017 They did urine samples the three times we went to the emergency room. We also did one at the doctor's office. One of the ER cultures grew so they said she had a bladder infection (no symptoms at all, but we did a round of antibiotics). Her PCP did a bunch of blood work, but I don't remember everything we tested for. We didn't do a 24-study of any kind. I'll call our family clinic and book an appointment to go over options for further investigation. I don't like to post all my personal info, but if you'd like information on making sure they check for Eosinophillic Esophagitis/EGID properly at the first scope feel free to PM me. It is not a dx that requires a big research hospital or any thing extra besides the scope she is already doing. Quote Link to comment Share on other sites More sharing options...
zoobie Posted February 1, 2017 Share Posted February 1, 2017 Did they rule out gastroparesis? Quote Link to comment Share on other sites More sharing options...
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