Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 And they have no appointments available. We are on a list to be called. This is so ridiculous. The scheduler did say I could have dd's primary care doctor call to press for an urgent appointment, so I guess that's what I will do. 2 Quote Link to comment Share on other sites More sharing options...
frugalmamatx Posted October 17, 2016 Share Posted October 17, 2016 (edited) I would be concerned about the heart murmur, given how long the vomiting has gone on. Electrolyte imbalance can cause heart issues. I know you said they checked the thyroid - did they run a full panel with anti-bodies? or just a basic check? I'd almost say Hashimoto's / Graves - it can present with nausea / vomiting that doesn't respond to typical medications but DOES respond to compazine {at least for me}. It would also explain the sudden heart murmur, as both can affect the heart. It is an auto-immune and can affect all body systems. ETA: I re-read your posts and saw your dd had been put on zoloft recently. Not sure if it was for a new issue, but if so I would definitely be asking for a full thyroid panel with anti-bodies, as thyroid can affect mental health if it's even a little bit off. My main symptom of how my thyroid is doing is my mental health unfortunately. Edited October 17, 2016 by frugalmamatx Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 17, 2016 Share Posted October 17, 2016 Yes, ask for emergency appointment and to be on any cancellation lists. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 I would be concerned about the heart murmur, given how long the vomiting has gone on. Electrolyte imbalance can cause heart issues. I know you said they checked the thyroid - did they run a full panel with anti-bodies? or just a basic check? I'd almost say Hashimoto's / Graves - it can present with nausea / vomiting that doesn't respond to typical medications but DOES respond to compazine {at least for me}. It would also explain the sudden heart murmur, as both can affect the heart. It is an auto-immune and can affect all body systems. We checked antibodies as well as TSH, T3, and T4. I have Hashimoto's and it can cause a host of issues when things are out of balance. Everything checked out normal for dd's thyroid. 1 Quote Link to comment Share on other sites More sharing options...
Mergath Posted October 17, 2016 Share Posted October 17, 2016 Did they do an EEG to rule out seizures? She could be having them in her sleep. It's common to have headaches and vomiting after a severe seizure, and I've had postictal states that lasted all day. I was around her age when I first started having seizures. 3 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 Did they do an EEG to rule out seizures? She could be having them in her sleep. It's common to have headaches and vomiting after a severe seizure, and I've had postictal states that lasted all day. I was around her age when I first started having seizures. No, but I agree this should be checked. 2 Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted October 17, 2016 Share Posted October 17, 2016 Have they checked her Vitamin B12 levels? https://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/signs Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 17, 2016 Share Posted October 17, 2016 From what a cardiologist told me, it's possible the murmur is more noticeable now if she is dehydrated. The echo should help clear up any possibilities. A murmur means a valve is leaky. A mild level of this is in the normal range. With the high histamine, I think of Mast Cell Activation Disorder which is treated by a combo of Zyrtec (the common antihistamine) and Zantac, which is used for stomach acid issues but is also a type of antihistamine. If you research this, look for recent research. It's a relatively new field. Serum tryptase testing during an episode can be helpful but is not definitive. Also, 24 hour urine yes for N-methylhistimine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/ My other though is to rule out a eosinophilic disorder. http://www.aaaai.org/conditions-and-treatments/related-conditions/eosinophilic-esophagitis http://www.chop.edu/conditions-diseases/eosinophilic-esophagitis 2 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 18, 2016 Author Share Posted October 18, 2016 She's thrown up 4x both last night and the night before. The oral compazine isn't helping. Quote Link to comment Share on other sites More sharing options...
PinkyandtheBrains. Posted October 18, 2016 Share Posted October 18, 2016 Did her doctor have a plan if it didn't work? Quote Link to comment Share on other sites More sharing options...
HeWillSoar Posted October 18, 2016 Share Posted October 18, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted October 18, 2016 Share Posted October 18, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 18, 2016 Author Share Posted October 18, 2016 Did her doctor have a plan if it didn't work? I'm supposed to call her to tell her. I don't know what we will try next. I think dd needs a GI work-up. We haven't investigated that side much. GI didn't come look at her in the hospital. I wanted them to, but everyone was sure it was migraine. 2 Quote Link to comment Share on other sites More sharing options...
Vintage81 Posted October 18, 2016 Share Posted October 18, 2016 Does she get the headache first, then vomit, or vomit then headache? Reading through some of the earlier posts, I was thinking it could be something like rebound headaches. I suffer from migraines and am at the point now that no matter what type of pain medication I take, OTC or prescription, my headaches feel worse and last longer. If it's more of a vomiting issue, then I agree that a GI work-up would be the next route to go. I hope you find answers soon. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 18, 2016 Share Posted October 18, 2016 I know lots of people that vomit with a migraine, but all feel better after throwing up. The don't keep vomiting for hours like that. I agree that mast cell activation is something to look into. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted October 18, 2016 Share Posted October 18, 2016 DDs BFF has Cyclical Vomiting. It happens every 20-30 days for her. EACH time it is a hospital admit. She gets severely dehydrated. If it isn't under control with IV RIGHT AWAY she is sick for WEEKS. I wonder if that has been investigated? Her drs are in Chicago. Her parents are very happy with her care. Her drs are hopeful she will grow out of them. She's 15 now. I don't mean to be off-topic here, but thought I'd address this. 1ds was diagnosed with cyclic vomiting. every three months, ER, IV fluids, IM narcotics, etc. . . each one worse (and longer) than the preceding episode. lots of testing at our children's hospital. they put him on propranolol (beta blocker) to prevent them. 2x a day. every day. treatment at the very first sign. he had a fractured vertebra in his spine pinching a nerve. my chiropractor diagnosed that from his pediatricians x-rays. . . . the allopaths ignored the fracture because "it's healed". the proof is in the pudding as they say. ONE adjustment and symptoms stopped. like that. he did require regular (monthly, then quarterly) adjustments as he grew or they'd come back. but he's perfectly fine now. veritaserum - I dont' think her symptoms fit this either. I hope they can figure it out. hang in there. 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted October 18, 2016 Share Posted October 18, 2016 I'm supposed to call her to tell her. I don't know what we will try next. I think dd needs a GI work-up. We haven't investigated that side much. GI didn't come look at her in the hospital. I wanted them to, but everyone was sure it was migraine. I'm so sorry. the arrogance is staggering at times . . . sometimes I wonder if they just don't want to have to think. I had this for much less. . .the ER was convinced I was having an asthma attack and that's how they treated me . . . .I don't have asthma, I had pneumonia. they only said "oops", when their treatment made me worse. I hope you can get her into the GI asap. 2 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 18, 2016 Share Posted October 18, 2016 (edited) She's thrown up 4x both last night and the night before. The oral compazine isn't helping. Surprised they went with oral if she is vomiting that much, it won't be absorbed. Suppositories, although unpleasant, might be a better choice. I wonder about IBS and migraine. Edited October 18, 2016 by melmichigan Quote Link to comment Share on other sites More sharing options...
38carrots Posted October 18, 2016 Share Posted October 18, 2016 I'm so sorry. I hope she's diagnosed quickly and gets an appropriate treatment. What a nightmare for both of you. Big hugs. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 18, 2016 Author Share Posted October 18, 2016 Dd's doctor's office is going to try to get us in with neurology faster. H. Pylori was negative. We discussed suppository compazine yesterday. Dd wanted to try oral first. 2 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 18, 2016 Author Share Posted October 18, 2016 (edited) Dd has a neurology appointment tomorrow! I hope this goes better than the hospital neurology consult. After this appointment scheduling should be easier because she'll no longer be a new patient. Edited October 18, 2016 by Veritaserum 20 Quote Link to comment Share on other sites More sharing options...
mysticmomma Posted October 18, 2016 Share Posted October 18, 2016 Any movement towards getting a gi opinion? Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 18, 2016 Author Share Posted October 18, 2016 Any movement towards getting a gi opinion? They tried the same tactic with GI and were unsuccessful. :-/ Quote Link to comment Share on other sites More sharing options...
kitten18 Posted October 18, 2016 Share Posted October 18, 2016 They tried the same tactic with GI and were unsuccessful. :-/Ugh, that's distressing. I would really want an upper GI done, I just keep coming back to ceiliac. I'm very happy that you have the neurology appt tomorrow. Hugs. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 18, 2016 Share Posted October 18, 2016 Ugh, that's distressing. I would really want an upper GI done, I just keep coming back to ceiliac. I'm very happy that you have the neurology appt tomorrow. Hugs. You know even the pediatrician could call in celiac blood testing to the lab. (I can't remember if that was done yet) while waiting to see the GI specialist. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 18, 2016 Author Share Posted October 18, 2016 We did a celiac panel last week. Everything was normal. Quote Link to comment Share on other sites More sharing options...
ddcrook Posted October 18, 2016 Share Posted October 18, 2016 I don't know how your hospital system but works, but here is something that has worked for me. Our children's hospital has a large specialty clinic at the hospital and several smaller clinics in the suburbs. When I call to set an appointment for my dd and they tell me I have to wait several months, I ask them to check availability at the smaller clinics. Every single time I've been able to get an appointment much sooner. I'm not sure why, but they only check the schedule at the main clinic unless I specifically ask for one of the others. Quote Link to comment Share on other sites More sharing options...
DesertBlossom Posted October 18, 2016 Share Posted October 18, 2016 We did a celiac panel last week. Everything was normal. Blood work? An endoscopy is supposed to be more reliable. 2 Quote Link to comment Share on other sites More sharing options...
PinkTulip Posted October 19, 2016 Share Posted October 19, 2016 I have no suggestions, just huge hugs for you and your daughter. I'm so so sorry that you have been going through this for such a long time! Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 19, 2016 Share Posted October 19, 2016 :grouphug: I hope you get some answers today! Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 19, 2016 Author Share Posted October 19, 2016 Blood work? An endoscopy is supposed to be more reliable. Yes, it was just bloodwork. I'm not opposed to doing a scope, but I'd like to have her seen by GI to see if that's indicated. I think it would be traumatizing for her. It's certainly more invasive than anything we've done so far. She's still puking as of this morning. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 19, 2016 Share Posted October 19, 2016 Was your neurologist appt today? Quote Link to comment Share on other sites More sharing options...
mom2samlibby Posted October 19, 2016 Share Posted October 19, 2016 I'm guessing they've done a complete blood work up. But, if not, have they checked her B12 levels? Several of her symptoms are on this list. https://www.nhlbi.nih.gov/health/health-topics/topics/prnanmia/signs What Are the Signs and Symptoms of Pernicious Anemia? A lack of vitamin B12 (vitamin B12 deficiency) causes the signs and symptoms of pernicious anemia. Without enough vitamin B12, your body can't make enough healthy red blood cells, which causes anemia. Some of the signs and symptoms of pernicious anemia apply to all types of anemia. Other signs and symptoms are specific to a lack of vitamin B12. Signs and Symptoms of Anemia The most common symptom of all types of anemia is fatigue (tiredness). Fatigue occurs because your body doesn’t have enough red blood cells to carry oxygen to its various parts. A low red blood cell count also can cause shortness of breath, dizziness, headache, coldness in your hands and feet, pale or yellowish skin, and chest pain. A lack of red blood cells also means that your heart has to work harder to move oxygen-rich blood through your body. This can lead to irregular heartbeats called arrhythmias (ah-RITH-me-ahs), heart murmur, an enlarged heart, or even heart failure. Signs and Symptoms of Vitamin B12 Deficiency Vitamin B12 deficiency may lead to nerve damage. This can cause tingling and numbness in your hands and feet, muscle weakness, and loss of reflexes. You also may feel unsteady, lose your balance, and have trouble walking. Vitamin B12 deficiency can cause weakened bones and may lead to hip fractures. Severe vitamin B12 deficiency can cause neurological problems, such as confusion, dementia, depression, and memory loss. Other symptoms of vitamin B12 deficiency involve the digestive tract. These symptoms include nausea (feeling sick to your stomach) and vomiting, heartburn, abdominal bloating and gas, constipation or diarrhea, loss of appetite, and weight loss. An enlarged liver is another symptom. A smooth, thick, red tongue also is a sign of vitamin B12 deficiency and pernicious anemia. Infants who have vitamin B12 deficiency may have poor reflexes or unusual movements, such as face tremors. They may have trouble feeding due to tongue and throat problems. They also may be irritable. If vitamin B12 deficiency isn't treated, these infants may have permanent growth problems. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 19, 2016 Share Posted October 19, 2016 My DD had an endoscopy and it was really so much quicker and easier than I anticipated. My DD didn't seem to mind it because she just wanted an answer and to feel better. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 19, 2016 Author Share Posted October 19, 2016 Today's neurologist thinks it's not a migraine. He referred us to GI. Dd has an appointment with GI on December 14th, and we are on a cancellation list. We are going to try Cyproheptadine on the chance it helps her vomiting. We have an appointment with her primary care provider on Monday. Maybe we can set up an endoscopy so that those results are ready before dd's GI appointment. She's also getting her echocardiogram on Monday. Dd has missed 3.5 weeks of school. We've kept in contact with her teacher and the principal, but all of us are agreeing that homeschool is the only feasible option now--especially since this is still not diagnosed or adequately managed. Dd is upset about everything. :( We restarted the Zoloft two days ago, but this whole situation would make anyone depressed. 2 Quote Link to comment Share on other sites More sharing options...
zoobie Posted October 19, 2016 Share Posted October 19, 2016 Today's neurologist thinks it's not a migraine. He referred us to GI. Dd has an appointment with GI on December 14th, and we are on a cancellation list. We are going to try Cyproheptadine on the chance it helps her vomiting. We have an appointment with her primary care provider on Monday. Maybe we can set up an endoscopy so that those results are ready before dd's GI appointment. She's also getting her echocardiogram on Monday. Dd has missed 3.5 weeks of school. We've kept in contact with her teacher and the principal, but all of us are agreeing that homeschool is the only feasible option now--especially since this is still not diagnosed or adequately managed. Dd is upset about everything. :( We restarted the Zoloft two days ago, but this whole situation would make anyone depressed. The school system should have a school-at-home option. :( The friend that I mentioned earlier--her DD's illness came to a crisis level as a junior, and she had to school at home her junior year. She returned her senior year once it was under control. She graduated high in her class, had multiple scholarship offers, etc. 3 Quote Link to comment Share on other sites More sharing options...
maize Posted October 19, 2016 Share Posted October 19, 2016 Really hope you get answers soon. Quote Link to comment Share on other sites More sharing options...
maize Posted October 19, 2016 Share Posted October 19, 2016 The vomiting alone is going to cause more health issues if you can't find a way to get it under control :( Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 19, 2016 Author Share Posted October 19, 2016 The school system should have a school-at-home option. :( The friend that I mentioned earlier--her DD's illness came to a crisis level as a junior, and she had to school at home her junior year. She returned her senior year once it was under control. She graduated high in her class, had multiple scholarship offers, etc. Luckily 4th grade is pretty low stakes in terms of credits and graduation requirements. I'm going to set her up to keep her skills up to date in math and language arts. She's not feeling great, so library books for history and science will be good enough. There are school-at-home options available, but I think they'd add a layer of stress that it would be best to avoid at the moment. 9 Quote Link to comment Share on other sites More sharing options...
JudoMom Posted October 19, 2016 Share Posted October 19, 2016 I'm going to mention abdominal migraines again. I know this isn't encouraging, but I know a young man who vomited almost daily, often multiple times, for over 15 years. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 19, 2016 Author Share Posted October 19, 2016 I'm going to mention abdominal migraines again. I know this isn't encouraging, but I know a young man who vomited almost daily, often multiple times, for over 15 years. We discussed that today, but it doesn't seem to match her symptoms. Quote Link to comment Share on other sites More sharing options...
zoobie Posted October 19, 2016 Share Posted October 19, 2016 Luckily 4th grade is pretty low stakes in terms of credits and graduation requirements. I'm going to set her up to keep her skills up to date in math and language arts. She's not feeling great, so library books for history and science will be good enough. There are school-at-home options available, but I think they'd add a layer of stress that it would be best to avoid at the moment. Ha! Oops. I was thinking she was 14 and in high school for some reason. I'm sorry! Math and books are plenty. :) 3 Quote Link to comment Share on other sites More sharing options...
PinkyandtheBrains. Posted October 19, 2016 Share Posted October 19, 2016 One of my kids takes Cyproheptadine for another reason. its a pretty low key med, which is nice. In daytime hours it makes him drowsy(which makes him crabby) and it makes him hungry. I hope it helps some. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 19, 2016 Share Posted October 19, 2016 Today's neurologist thinks it's not a migraine. He referred us to GI. Dd has an appointment with GI on December 14th, and we are on a cancellation list. We are going to try Cyproheptadine on the chance it helps her vomiting. We have an appointment with her primary care provider on Monday. Maybe we can set up an endoscopy so that those results are ready before dd's GI appointment. She's also getting her echocardiogram on Monday. Dd has missed 3.5 weeks of school. We've kept in contact with her teacher and the principal, but all of us are agreeing that homeschool is the only feasible option now--especially since this is still not diagnosed or adequately managed. Dd is upset about everything. :( We restarted the Zoloft two days ago, but this whole situation would make anyone depressed. The appointment seems so far ahead. I was going to suggest waiting to see the GI before the endoscopy only because he might see a reason for a colonoscopy...though I hate to mention it. If you had to do both, of course, it would be better to get them done at one. But if it's a matter of waiting until December, I'd probably go ahead and get the endoscopy ASAP if you are able. For us, I don't think the endoscopy was more than 30 minutes once the prep was done (changing clothes, signing papers, inserting IV, etc.). And the anesthesia was so light she was able to walk out once they were ready to let her go, maybe an hour or so after the procedure. The doctor brought us out pictures and talked about her impressions while we were waiting, and the biopsy results were maybe a week after that. Other studies we had were an xray to check for constipation and other stuff, and an abdominal ultrasound. The ultrasound was also a very quick, simple, non-invasive procedure that your pediatrician might be able to order. Quote Link to comment Share on other sites More sharing options...
displace Posted October 19, 2016 Share Posted October 19, 2016 We have an appointment with her primary care provider on Monday. Maybe we can set up an endoscopy so that those results are ready before dd's GI appointment. She's also getting her echocardiogram on Monday. Dd has missed 3.5 weeks of school. We've kept in contact with her teacher and the principal, but all of us are agreeing that homeschool is the only feasible option now--especially since this is still not diagnosed or adequately managed. Dd is upset about everything. :( We restarted the Zoloft two days ago, but this whole situation would make anyone depressed. Endoscopies are procedures done by GI specialists. Your PCP cannot order one, just a referral to GI. I'm thinking of your family and hope this resolves. Quote Link to comment Share on other sites More sharing options...
Vida Winter Posted October 19, 2016 Share Posted October 19, 2016 :grouphug: :grouphug: :grouphug: and praying you have answers soon. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 20, 2016 Author Share Posted October 20, 2016 I'm thinking back to a week ago right after dd was admitted to the children's hospital. The night shift attending pediatrician said he thought she needed MRI in the morning and a consult with both neurology and GI. In the morning neuro said they didn't need MRI because they were sure it was migraine. We never saw anyone from GI, even though dd's number one complaint was vomiting. So, I'm wondering if I can call the Patient Relations reps who came when I was upset and somehow get into GI sooner. Dd should have been seen by them while she was in patient. Instead we got a consult with Behavioral Health. This is such a ridiculous mess. Even with me actively pursuing assistance, we are not getting the care she needs. It shouldn't take eight visits and and in patient stay to misdiagnose her with migraine while failing to look at other options. 15 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted October 20, 2016 Share Posted October 20, 2016 I'm thinking back to a week ago right after dd was admitted to the children's hospital. The night shift attending pediatrician said he thought she needed MRI in the morning and a consult with both neurology and GI. In the morning neuro said they didn't need MRI because they were sure it was migraine. We never saw anyone from GI, even though dd's number one complaint was vomiting. So, I'm wondering if I can call the Patient Relations reps who came when I was upset and somehow get into GI sooner. Dd should have been seen by them while she was in patient. Instead we got a consult with Behavioral Health. This is such a ridiculous mess. Even with me actively pursuing assistance, we are not getting the care she needs. It shouldn't take eight visits and and in patient stay to misdiagnose her with migraine while failing to look at other options. sounds like the night shift ped was more with-it than the day shift. very unfortunate he was overruled. I'd say - go talk to the patient relations rep, and push. 1 Quote Link to comment Share on other sites More sharing options...
MiMi 4under3 Posted October 20, 2016 Share Posted October 20, 2016 I'm thinking back to a week ago right after dd was admitted to the children's hospital. The night shift attending pediatrician said he thought she needed MRI in the morning and a consult with both neurology and GI. In the morning neuro said they didn't need MRI because they were sure it was migraine. We never saw anyone from GI, even though dd's number one complaint was vomiting. So, I'm wondering if I can call the Patient Relations reps who came when I was upset and somehow get into GI sooner. Dd should have been seen by them while she was in patient. Instead we got a consult with Behavioral Health. This is such a ridiculous mess. Even with me actively pursuing assistance, we are not getting the care she needs. It shouldn't take eight visits and and in patient stay to misdiagnose her with migraine while failing to look at other options. :cursing: I'm so frustrated for you! Hoping it gets resolved VERY SOON! :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 20, 2016 Share Posted October 20, 2016 I'm so sorry about this whole mess. Keep us updated--I pray for your sweet daughter every time I see the thread pop up. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
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