MomsintheGarden Posted October 12, 2016 Share Posted October 12, 2016 I am so sorry. Prayers that you get answers soon, and that it clears up quickly. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 Could it be reflux? Mine is always bad in the evenings. Have you tried anything like nexium or prilosec? 1 Quote Link to comment Share on other sites More sharing options...
Rebecca Posted October 12, 2016 Share Posted October 12, 2016 I am so sorry. I think you need to have her head checked...and her eyes. Vomiting is a major symptom (of scary serious - so sorry). I hope those things are ruled out immediately. 1 Quote Link to comment Share on other sites More sharing options...
JudoMom Posted October 12, 2016 Share Posted October 12, 2016 Have they talked about abdominal migraines at all? Quote Link to comment Share on other sites More sharing options...
mommymonster Posted October 12, 2016 Share Posted October 12, 2016 Does she have a headache, followed by vomiting? Is that the cycle? If you are already referred to neuro, please request a MRI. My son had prolonged vomiting due to neuro issues. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 Does she have a headache, followed by vomiting? Is that the cycle? If you are already referred to neuro, please request a MRI. My son had prolonged vomiting due to neuro issues. We've started writing things down over the past few days. She gets a headache and double vision, vomits, and then her head and vision return to normal. Her symptoms match what I'm seeing described for brain stem tumors, which, of course, worries me quite a lot. I'll ask for a referral to a pediatric neurologist, but I know our regular doctor can order an MRI now so that its results are ready by the time we're actually at the specialist's appointment. We did that when my 14yo started getting migraines (at age 8). MRI was normal, so we created a migraine treatment plan (at the pediatric neurologist). Dd10's situation doesn't really fit migraine, IME. I've only had visual disturbance twice out of hundreds of migraines. I never vomit with them. My 14yo doesn't get visual disturbance, but she does feel nauseated. Neither of us has ever had a migraine last 17 days. 2 Quote Link to comment Share on other sites More sharing options...
mommymonster Posted October 12, 2016 Share Posted October 12, 2016 We've started writing things down over the past few days. She gets a headache and double vision, vomits, and then her head and vision return to normal. Her symptoms match what I'm seeing described for brain stem tumors, which, of course, worries me quite a lot. I'll ask for a referral to a pediatric neurologist, but I know our regular doctor can order an MRI now so that its results are ready by the time we're actually at the specialist's appointment. We did that when my 14yo started getting migraines (at age 8). MRI was normal, so we created a migraine treatment plan (at the pediatric neurologist). Dd10's situation doesn't really fit migraine, IME. I've only had visual disturbance twice out of hundreds of migraines. I never vomit with them. My 14yo doesn't get visual disturbance, but she does feel nauseated. Neither of us has ever had a migraine last 17 days. Yes, I'm sorry. That was my son's diagnosis. Of course it could be dozens of different things, so please don't assume the worst. DS was worse in the mornings and when he went from lying down to standing up, so perhaps add those sort of facts to your headache/vomit diary. DS's pediatrician diagnosed him. We had been seen by dozens of doctors, but she ordered the MRI. I wouldn't wait for a referral to get the MRI in the works, if your pediatrician can make it happen. Please do keep updating this thread. I will be thinking about you both! 1 Quote Link to comment Share on other sites More sharing options...
displace Posted October 12, 2016 Share Posted October 12, 2016 Thinking of and praying for you Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted October 12, 2016 Share Posted October 12, 2016 Seizures? Quote Link to comment Share on other sites More sharing options...
Joyofsixreboot Posted October 12, 2016 Share Posted October 12, 2016 Push for the MRI now. Waiting just lets her feel bad with no action and let's you worry. I'm so sorry for you both. 5 Quote Link to comment Share on other sites More sharing options...
magnificent_baby Posted October 12, 2016 Share Posted October 12, 2016 If you can't get a CT or an MRI scheduled today, I would go the nearest children's ER and ask for her to be admitted. You've dealt with this for quite some time now and I think it's important to rule out the big things. Today. Hugs!! 3 Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted October 12, 2016 Share Posted October 12, 2016 Praying that you get answers and relief for your dd's symptoms today. (((Hugs))) Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 We've started writing things down over the past few days. She gets a headache and double vision, vomits, and then her head and vision return to normal. Her symptoms match what I'm seeing described for brain stem tumors, which, of course, worries me quite a lot. I'll ask for a referral to a pediatric neurologist, but I know our regular doctor can order an MRI now so that its results are ready by the time we're actually at the specialist's appointment. We did that when my 14yo started getting migraines (at age 8). MRI was normal, so we created a migraine treatment plan (at the pediatric neurologist). Dd10's situation doesn't really fit migraine, IME. I've only had visual disturbance twice out of hundreds of migraines. I never vomit with them. My 14yo doesn't get visual disturbance, but she does feel nauseated. Neither of us has ever had a migraine last 17 days. I have several friends that get the vision and vomiting with migraines, and you do have a family history of them, so in some ways, that's a good thing if that is it. That it is lasting so long, I can't explain. Hugs. 1 Quote Link to comment Share on other sites More sharing options...
mommytobees Posted October 12, 2016 Share Posted October 12, 2016 It lines up with several brain stem complications, not just a tumor. Plus, there are other neuro complications that can mimic brain stem involvement. I'd ask for both the Ped's neuro referral and the MRI or at least a CT. Kris We've started writing things down over the past few days. She gets a headache and double vision, vomits, and then her head and vision return to normal. Her symptoms match what I'm seeing described for brain stem tumors, which, of course, worries me quite a lot.I'll ask for a referral to a pediatric neurologist, but I know our regular doctor can order an MRI now so that its results are ready by the time we're actually at the specialist's appointment. We did that when my 14yo started getting migraines (at age 8). MRI was normal, so we created a migraine treatment plan (at the pediatric neurologist).Dd10's situation doesn't really fit migraine, IME. I've only had visual disturbance twice out of hundreds of migraines. I never vomit with them. My 14yo doesn't get visual disturbance, but she does feel nauseated. Neither of us has ever had a migraine last 17 days. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 (edited) We are waiting to be seen at the children's hospital. This morning she says it hurts to see. She also can't squeeze my fingers. And, of course, she vomited during the night. Edited October 12, 2016 by Veritaserum Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 We are waiting to be seen at the children's hospital. This morning she says it hurts to see. She also can't squeeze my fingers. And, of course, she vomited during the night. I'm praying hard for your daughter and you. And for the medical team to be insightful and compassionate and very very thorough. While you are waiting, can you write down a timeline of what has happened, and then a list of her symptoms, not just the ones right now but all of them in on place? Include how often for those that frequency would be meaningful. So - vomits 3-5 times a day, blurred vision,headache, weakness in extremities, painful vision, etc etc 1 Quote Link to comment Share on other sites More sharing options...
Junie Posted October 12, 2016 Share Posted October 12, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 I gave the timeline history to the ER doc. He agrees we need to see her brain, but he can't order MRI because they're completely booked. Those patients won't get bumped without a trauma emergency. He ordered a CT scan. He will also write a prescription for MRI and refer us to neurology. I'm so frustrated. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 I asked about contrast for the CT so we will have it both with and without contrast. The doctor came back to ask if I had a background in medicine. He's never had a parent ask about contrast before. I just want answers. 6 Quote Link to comment Share on other sites More sharing options...
Guest Posted October 12, 2016 Share Posted October 12, 2016 I hope he can advocate for you - that is so frustrating about the MRI schedule but at least a CT will be better than nothing and a good first step to see what is flowing and where. Praying for her here! Quote Link to comment Share on other sites More sharing options...
PinkTulip Posted October 12, 2016 Share Posted October 12, 2016 Thinking about you and your daughter today - hoping you can get some answers. Also, I'm sending you a PM Quote Link to comment Share on other sites More sharing options...
Selkie Posted October 12, 2016 Share Posted October 12, 2016 I'm so sorry, this must be so scary for you and her. :grouphug: Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted October 12, 2016 Share Posted October 12, 2016 :grouphug: Praying for your daughter and that you get the answers you need. :grouphug: Quote Link to comment Share on other sites More sharing options...
EKS Posted October 12, 2016 Share Posted October 12, 2016 :grouphug: I hope you get some answers. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 Waiting for CT results now. The tech was going to take us back to ER without contrast. I had to argue with her that we needed contrast and that the doctor approved it. The tech checked with the doctor. They did the contrast. I want to smash things because of how difficult it is to get the care she needs. She has been ill for 18 days! 3 Quote Link to comment Share on other sites More sharing options...
displace Posted October 12, 2016 Share Posted October 12, 2016 Praying for her and you. Quote Link to comment Share on other sites More sharing options...
UCF612 Posted October 12, 2016 Share Posted October 12, 2016 I'm glad she has you to advocate for her. It is frustrating getting the right care sometimes! I hope you get answers and an easy solution soon. 1 Quote Link to comment Share on other sites More sharing options...
mommymonster Posted October 12, 2016 Share Posted October 12, 2016 Keep advocating hard for her! You're doing great. They don't have to like you. They need to diagnose her. Quote Link to comment Share on other sites More sharing options...
Pawz4me Posted October 12, 2016 Share Posted October 12, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 Waiting is hard. I'm so agitated right now. We we finally get an answer? Will it be terrible news? Or will we get the good news of no tumor but be sent home from here without any idea of what's wrong? Right now it's Schrödinger's tumor. 2 Quote Link to comment Share on other sites More sharing options...
MistyMountain Posted October 12, 2016 Share Posted October 12, 2016 Your in my thoughts. That must be so scary. Quote Link to comment Share on other sites More sharing options...
maize Posted October 12, 2016 Share Posted October 12, 2016 Really hoping you get some answers soon. How is your dd holding up through all of this? Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 Dd is upset. She wants to go home. She doesn't feel well. :( CT came back normal. ER doc is going to see if he can get her admitted so we can get faster answers. He may or may not be successful. We're going to draw more labs and do IV fluids. 7 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 Dd is upset. She wants to go home. She doesn't feel well. :( CT came back normal. ER doc is going to see if he can get her admitted so we can get faster answers. He may or may not be successful. We're going to draw more labs and do IV fluids. I'm praying they admit her. Hugs mama. SaveSave Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 Did they do a neuro exam yet? I would think any doctor in the ER can give one, even without seeing a neurologist. It would be a start. 1 Quote Link to comment Share on other sites More sharing options...
maize Posted October 12, 2016 Share Posted October 12, 2016 I guess it is good that the CT can back normal, but lousy to still have no answers at all. Quote Link to comment Share on other sites More sharing options...
Guest Posted October 12, 2016 Share Posted October 12, 2016 No answers is almost worse than a scary answer in some ways. Grrr, I'm sorry they're being jerks. She really should be admitted at this point! Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 The doc just popped in to say neurologist thinks really bad migraine (I disagree--18 days? Didn't respond to Maxalt). The GI doc is still thinking. Both were phone consults with the ER doc. They just swabbed her nose and drew blood. She is utterly miserable (screaming, crying, shaking). They did a basic neuro exam (squeezing hands, walking across the room, following light, etc.). They also did an eye test (reading letters). She collapsed during the eye test (shaky legs). Quote Link to comment Share on other sites More sharing options...
UCF612 Posted October 12, 2016 Share Posted October 12, 2016 Poor girl. I hope they admit her and don't brush this off. An 18 day migraine seems insane but I don't know what is possible. Quote Link to comment Share on other sites More sharing options...
RioSamba Posted October 12, 2016 Share Posted October 12, 2016 You are an awesome mom. I'm so sorry for all of this suffering. 1 Quote Link to comment Share on other sites More sharing options...
maize Posted October 12, 2016 Share Posted October 12, 2016 I don't think it is unheard of to have daily migraines for weeks at a time, I would consider that a possibility--but I would insist on pursuing every other possible cause as well. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 https://www.migrainetrust.org/about-migraine/types-of-migraine/migraine-with-brainstem-aura/ Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted October 12, 2016 Share Posted October 12, 2016 I gave the timeline history to the ER doc. He agrees we need to see her brain, but he can't order MRI because they're completely booked. Those patients won't get bumped without a trauma emergency. He ordered a CT scan. He will also write a prescription for MRI and refer us to neurology. I'm so frustrated. is there another hospital/clinic that would have a slot for a MRI? I would push for something. my friend kept getting the run around while sitting in the ER waiting for a MRI. (oh, we have all these trauma cases . . . . ) they finally found somewhere they could get one. of all the "trauma cases"/people who came through the ER that day . . . her dd was the only one admitted to ICU. (as soon as they saw her results.) Quote Link to comment Share on other sites More sharing options...
LMV Posted October 12, 2016 Share Posted October 12, 2016 I'm so sorry your daughter has been struggling for so long. I hope you get some answers soon. A few more thoughts: *Sadly, she really does need a MRI of the Brain. Unfortunately it can be hard to visualize all of the posterior fossa in children with a CT and statistically their brain tumors are more likely to hide there. While headache, visual changes, and vomiting can certainly be other things they all fit with a tumor and this needs to be ruled out. I can understand that they may not be able to get the MRI from the ED (I'm an EM physician if I want an MRI I need to have an emergent this MRI will change my management over the next hour kind of reason) but they can admit her overnight and get the MRI sometime in the next 24 hours. (Perhaps even overnight because often inpatients are brought down for outpatient scheduled cancellations or no shows. *I won't say this couldn't be some atypical migraine (perhaps with some superimposed cyclic vomiting syndrome) with this presentation but I think other things need to be excluded before that is the decided diagnosis. *If this has been going on for almost three weeks I would be really surprised if she wasn't at least mildly dehydrated. Sometimes dehydration can make it impossible to break the vomiting cycle (even if the underlying diagnosis really is viral (and usually self limited) gastritis/gastroenteritis. *It sounds like she has had three ED visits (or were there more) and a few outpatient PCP visits, you can make a pretty strong case for a "failed outpatient treatment" admission. (If it matters with your insurance whether it is a full admit or observation these words will usually make the full admit case.) *I presume they did a comprehensive metabolic panel at some point or are doing one now? Because looking for electrolyte derangements (either due to the vomiting or in a few cases causing the vomiting) and liver enzymes would be key. You could also add an amylase and lipase if that hasn't been done (and, yes, that is a rare zoloft association when the ED doctor asks again if you're a physician). Good Luck! I hope she feels better soon. 10 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 https://www.migrainetrust.org/about-migraine/types-of-migraine/migraine-with-brainstem-aura/ I had a couple of migraines like that back in 2008. Freaky stuff. She's not presenting with one-sided anything. Everything is bilateral. Quote Link to comment Share on other sites More sharing options...
Insertcreativenamehere Posted October 12, 2016 Share Posted October 12, 2016 Push for admission and a neurology consult. Stress to neurology that they need to consider all possibilities. I've found that you can answers more quickly when you're inpatient ... my son has been inpatient for more than 200 days in his mere 4 years. Sometimes you have to tell the doctors what to do -- you're paying them, and you're the only one who has the full picture of your child's situation. Sent from my iPhone using Tapatalk 2 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 I'm so sorry your daughter has been struggling for so long. I hope you get some answers soon. A few more thoughts: *Sadly, she really does need a MRI of the Brain. Unfortunately it can be hard to visualize all of the posterior fossa in children with a CT and statistically their brain tumors are more likely to hide there. While headache, visual changes, and vomiting can certainly be other things they all fit with a tumor and this needs to be ruled out. I can understand that they may not be able to get the MRI from the ED (I'm an EM physician if I want an MRI I need to have an emergent this MRI will change my management over the next hour kind of reason) but they can admit her overnight and get the MRI sometime in the next 24 hours. (Perhaps even overnight because often inpatients are brought down for outpatient scheduled cancellations or no shows. *I won't say this couldn't be some atypical migraine (perhaps with some superimposed cyclic vomiting syndrome) with this presentation but I think other things need to be excluded before that is the decided diagnosis. *If this has been going on for almost three weeks I would be really surprised if she wasn't at least mildly dehydrated. Sometimes dehydration can make it impossible to break the vomiting cycle (even if the underlying diagnosis really is viral (and usually self limited) gastritis/gastroenteritis. *It sounds like she has had three ED visits (or were there more) and a few outpatient PCP visits, you can make a pretty strong case for a "failed outpatient treatment" admission. (If it matters with your insurance whether it is a full admit or observation these words will usually make the full admit case.) *I presume they did a comprehensive metabolic panel at some point or are doing one now? Because looking for electrolyte derangements (either due to the vomiting or in a few cases causing the vomiting) and liver enzymes would be key. You could also add an amylase and lipase if that hasn't been done (and, yes, that is a rare zoloft association when the ED doctor asks again if you're a physician). Good Luck! I hope she feels better soon. Thanks. We ran a metabolic panel on Monday. I had my husband call for the results today. He texted on his way out the door that the only abnormal things were low vitamin B and elevated CBC (no idea which levels or how high). This is our third trip to the ED. We've also visited her primary care provider three times. Failed outpatient treatment is so very accurate. This has been awful. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 Thanks. We ran a metabolic panel on Monday. I had my husband call for the results today. He texted on his way out the door that the only abnormal things were low vitamin B and elevated CBC (no idea which levels or how high). This is our third trip to the ED. We've also visited her primary care provider three times. Failed outpatient treatment is so very accurate. This has been awful. Hmm wonder how low. Low thiamine can cause vomiting. Low B vitamins can also cause other issues...I'll look them up for you. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 12, 2016 Author Share Posted October 12, 2016 They're admitting her. I hope we finally get a good answer and (more importantly) a correct treatment plan. 28 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 12, 2016 Share Posted October 12, 2016 They're admitting her. I hope we finally get a good answer and (more importantly) a correct treatment plan. Oh thank goodness! Hopefully they can control her pain and vomiting while she is there, and get her hydrated which may help a lot too. Quote Link to comment Share on other sites More sharing options...
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