The Governess Posted October 15, 2016 Share Posted October 15, 2016 Wow, you have both been through so much. Glad the results were good for now. Hope you both are able to rest and she gets some relief from her symptoms. Hopefully you will have answers soon. Quote Link to comment Share on other sites More sharing options...
Joyofsixreboot Posted October 15, 2016 Share Posted October 15, 2016 Yay! Sent from my SAMSUNG-SM-G900A using Tapatalk Quote Link to comment Share on other sites More sharing options...
UCF612 Posted October 15, 2016 Share Posted October 15, 2016 Hope the worst is over and someday you can look back and remember this as a blip on the radar. Glad the MRI was done and happy it didn't reveal anything alarming. Quote Link to comment Share on other sites More sharing options...
PinkTulip Posted October 15, 2016 Share Posted October 15, 2016 Hoping the specialist doesn't see anything concerning and that your daughter stays stable and vomit free. I still think you did the right thing by pushing for the MRI to rule out anything super serious. Take care of yourself over the next several days, too - you have been through the wringer! 1 Quote Link to comment Share on other sites More sharing options...
Eagle Posted October 15, 2016 Share Posted October 15, 2016 I'm glad she got the MRI. It was worth the battle. Many hugs to you and your daughter. :grouphug: Quote Link to comment Share on other sites More sharing options...
maize Posted October 15, 2016 Share Posted October 15, 2016 Hope your dd is doing well and is happily resting at home. Please keep us updated how things go-- fingers crossed that the crisis really is past and does not recur in the future. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 15, 2016 Share Posted October 15, 2016 (edited) I'm glad that they did the MRI. I wouldn't trust a resident as the final say, as mentioned before, they are dumb at this point in the year, so please follow up. Request a copy of the specialists report and a disc of the MRI images for your records. Edited October 15, 2016 by melmichigan 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 15, 2016 Author Share Posted October 15, 2016 For sure I will follow up. This was the chief resident pediatrician, but obviously a radiologist and neurologist still need to read it. 2 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 16, 2016 Share Posted October 16, 2016 Just repeating the recommendation to get a copy of the MRI images. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 16, 2016 Share Posted October 16, 2016 How is your daughter doing? 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 16, 2016 Author Share Posted October 16, 2016 She's had headache and nausea off and on, but she hasn't vomited since Wednesday. 7 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted October 16, 2016 Share Posted October 16, 2016 She's had headache and nausea off and on, but she hasn't vomited since Wednesday. :hurray: Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 16, 2016 Author Share Posted October 16, 2016 (edited) She's throwing up again with headache, blurry vision, and trouble walking (weak, shaky legs). 😫 She got a 4.5-day break. This started 22 days ago. Edited October 16, 2016 by Veritaserum Quote Link to comment Share on other sites More sharing options...
maize Posted October 16, 2016 Share Posted October 16, 2016 :( 1 Quote Link to comment Share on other sites More sharing options...
zoobie Posted October 16, 2016 Share Posted October 16, 2016 Noooooo! Poor girl! :( Have they looked at gastroparesis? A friend's daughter was diagnosed with that after several years of misery. I think they went to CHOP. Quote Link to comment Share on other sites More sharing options...
frugalmamatx Posted October 16, 2016 Share Posted October 16, 2016 It's a little thing, but right now while she is having motor skills symptoms GRAB a phone / camera and film it. Since they are sporadic, this way your concerns can't be written off. 6 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 16, 2016 Author Share Posted October 16, 2016 Noooooo! Poor girl! :( Have they looked at gastroparesis? A friend's daughter was diagnosed with that after several years of misery. I think they went to CHOP. She hasn't had any GI study. The gastroenterologist team never saw her at the hospital. We do still have a referral to the pediatric GI clinic, but they weren't taking appointments when I called two weeks ago to schedule. It's a little thing, but right now while she is having motor skills symptoms GRAB a phone / camera and film it. Since they are sporadic, this way your concerns can't be written off. That's a good idea. Quote Link to comment Share on other sites More sharing options...
Terabith Posted October 17, 2016 Share Posted October 17, 2016 Video and take her back. 3 Quote Link to comment Share on other sites More sharing options...
UCF612 Posted October 17, 2016 Share Posted October 17, 2016 Oh no! Quote Link to comment Share on other sites More sharing options...
mysticmomma Posted October 17, 2016 Share Posted October 17, 2016 :( Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 There aren't any other children's hospitals in the state and the one she was at is the top children's hospital for our region. I'm hoping to meet with our family doctor tomorrow instead of the nurse practitioner. Maybe she will have some new ideas. We haven't seen her at all during this illness (she got married and was out for part of it). 1 Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted October 17, 2016 Share Posted October 17, 2016 (((Veritaserum and dd))) 1 Quote Link to comment Share on other sites More sharing options...
RioSamba Posted October 17, 2016 Share Posted October 17, 2016 I'm so sorry to hear this. Your poor DD! Poor Mama. 1 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 17, 2016 Share Posted October 17, 2016 (edited) Do you have a discharge plan for the current scenario? I'd suggest having your peds/PA do a follow-up call on the MRI report, just so it doesn't get lost in the shuffle. Edited October 17, 2016 by melmichigan Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 Do you have a discharge plan for the current scenario? Sort of. The attending ped said she might vomit again for a couple of days. This is her second day home. I'm supposed to take her back if she escalates back to multiple times per day/can't keep food down. She didn't eat much today because her stomach didn't feel good. I don't know what outpatient treatment options are available to help her. Zofran, phenergan, and rizatriptan have not worked. The only thing that has worked is the toradol + compazine + Benadryl IV cocktail she got in the ER on Wednesday. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 17, 2016 Share Posted October 17, 2016 (edited) Sort of. The attending ped said she might vomit again for a couple of days. This is her second day home. I'm supposed to take her back if she escalates back to multiple times per day/can't keep food down. She didn't eat much today because her stomach didn't feel good. I don't know what outpatient treatment options are available to help her. Zofran, phenergan, and rizatriptan have not worked. The only thing that has worked is the toradol + compazine + Benadryl IV cocktail she got in the ER on Wednesday. So they didn't send her home with anything? Are they thinking she won't keep meds down? Toradol and Benadryl can be given orally, compazine can be given by suppository. Obviously IV is the most effective, but there are other options. That is very poor outpatient management, especially on a weekend. Edited October 17, 2016 by melmichigan Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 So they didn't send her home with anything? Are they thinking she won't keep meds down? Toradol and Benadryl can be given orally, compazine can be given by suppository. Obviously IV is the most effective, but there are other options. That is very poor outpatient management, especially on a weekend. This whole illness has been horribly managed. She's been to the emergency room three times and her regular provider three times, and she spent two nights in the hospital. We still don't have this under control or really know what we are dealing with. She threw up again. 2x in four hours. Her head hurts and we don't have something that works. I can't give her more Zofran (which didn't work anyway). I gave her Benadryl. Quote Link to comment Share on other sites More sharing options...
mysticmomma Posted October 17, 2016 Share Posted October 17, 2016 Did you ever meet with a patient advocate? Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 Did you ever meet with a patient advocate? Yes, that's how she got the MRI before we were discharged. We don't have the results from the MRI, yet, though. I'm hoping our regular doctor can exert pressure to get those. 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted October 17, 2016 Share Posted October 17, 2016 (hugs). I'm sorry. I'd take her to a different, non-Childrens hospital. Do you have a Catholic hospital nearby? I'm not Catholic, but I've worked at a lot of places (I did some travel nursing), and they always seemed the most thorough with rare and complicated situations. And frankly, they seemed a lot more likely to listen to the concerns and instincts of parents, especially if they are either a non-teaching hospital or where nuns still have a heavy presence in management. Also, the ER has always been able to bump others for imaging studies at every one I've floated to. I wasn't an ER nurse, but sometimes covered there, especially during flu season. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 Day 23: We are back to where we started. She threw up four times between 5pm - 6am. Her head hurts, too. There are three hospital systems in our area. One is owned by our insurance. The other two systems aren't covered (including the Catholic hospital and the non-children's hospital on the university campus). The only other children's hospital is for orthopedic needs, nothing else. The hospital local to us sent us home after ruling out appendicitis and without investigating anything else, so I'm not hopeful they'd be more proactive. Quote Link to comment Share on other sites More sharing options...
maize Posted October 17, 2016 Share Posted October 17, 2016 (edited) When you go back to the children's hospital, can you bypass the residents and insist on seeing only experienced physicians? Get that patient advocate helping you navigate right from the beginning. Many hugs to your daughter, yourself, and the rest of your family who I'm sure have been stressed by this whole situation as well. Do you have help locally--family or friends to smooth things over at home while you're busy with the sick child? Edited October 17, 2016 by maize 3 Quote Link to comment Share on other sites More sharing options...
El... Posted October 17, 2016 Share Posted October 17, 2016 Oh my. I have nothing helpful to suggest, but :grouphug: :grouphug: :grouphug: and I'm praying now. Quote Link to comment Share on other sites More sharing options...
Innisfree Posted October 17, 2016 Share Posted October 17, 2016 I have nothing helpful to add, but I'm so sorry your daughter is going through this. It sounds so scary and miserable for her and all of you. I'm thinking of you and hoping for a good resolution soon. Quote Link to comment Share on other sites More sharing options...
Jaybee Posted October 17, 2016 Share Posted October 17, 2016 Oh no. :grouphug: :grouphug: :grouphug: I'm so sorry. Praying for you and your dd, for strength and that they will figure out what's wrong! Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 I'm going to just take dd to our clinic when it opens this morning and ask to see her doctor any time she can fit us in. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 We do have family (my parents, my sister, dh's parents) here locally. Dh has been working from home and managing other kids while I've been trying to get help for dd. 2 Quote Link to comment Share on other sites More sharing options...
MooCow Posted October 17, 2016 Share Posted October 17, 2016 (edited) Do you have Kaiser? Edited October 17, 2016 by MooCow Quote Link to comment Share on other sites More sharing options...
rjand6more Posted October 17, 2016 Share Posted October 17, 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. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted October 17, 2016 Share Posted October 17, 2016 I'm so sorry this has started again. I hope the MRI shows something, or you can get her into a gastro. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 Do you have Kaiser? No, but it's a similar system. 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've read about Cyclical Vomiting and that doesn't seem to fit what's happening with dd. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 We are in the waiting room at the clinic right now. Dd is checked in, but we are just going to have to wait for someone to see her. 10 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 17, 2016 Share Posted October 17, 2016 I hope your actual doctor can see her, and get her into a GI and Neurologist asap. Or, will your insurance cover traveling to a place like Mayo or Cleveland Clinic? Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 17, 2016 Share Posted October 17, 2016 At this point, if it IS a migraine, they need to figure out what to use to treat it, which they haven't. If it isn't they need to figure out what it is. Does the vomiting come first, or the headache? 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 17, 2016 Share Posted October 17, 2016 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted October 17, 2016 Share Posted October 17, 2016 Wow. It breaks my heart for your dd (and you) that she is going through this. Praying for a good resolution today! Quote Link to comment Share on other sites More sharing options...
mommytobees Posted October 17, 2016 Share Posted October 17, 2016 Yes, that's how she got the MRI before we were discharged. We don't have the results from the MRI, yet, though. I'm hoping our regular doctor can exert pressure to get those. Okay, so I came on this morning (busy day today LOL) for this.... I have two thoughts for you. 1) MR Images I've become a master at getting images from different places. (I hate saying that, on multiple levels.) Forget waiting for your doctor. Different hospitals have different policies at getting the discs, with or without the rad's report. Call the hospital and ask for two different things: a) I need a copy of my minor daughter's recent images and the radiologist's report accompanying them for both MY records and for the Doctor's records. What do I need to do to get these images? Most of the time, they will tell you to have the doctor's office contact to request. One of our local hospitals are *really* bad about allowing patients to access their own stuff. But, press the issue. If they tell you, you can have them now, come pick them up (with a wait in the waiting area). GO GET THEM. A disc in hand is of value....more value with a rad's report. If they tell you that you must wait X amount of time and the doctor must request their own, call your Primary's office and tell them you are going to call two to three times a day until you get a verbal report of the radiologist's report. And, then follow through. 2) I'm hating this, but what were the protocols followed when they did the MR? Did they do the MR with contrast? Did she hold still? Does she have braces? You may not know the answer to the first one. You should know if she had contrast, or ask her. I'm worried about your daughter and have been thinking about her. Kris, who has to stop off at the Imaging Dept. of the local AFB clinic to get the rad's report from my daughter's MR from Friday. {{Hugs}} I really do understand. 8 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 17, 2016 Share Posted October 17, 2016 (edited) I'm going to just take dd to our clinic when it opens this morning and ask to see her doctor any time she can fit us in. While you're waiting have a nurse pull the radiology report to see if it's been finalized. I'm hoping they did contrast. Edited October 17, 2016 by melmichigan Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 We are going to try compazine at home to control the vomiting. She has a heart murmur now (no one caught that at the hospital, maybe it's new). It's most likely benign, but at this point we are going to investigate everything. She's going to get an echo this week. Her blood test last week showed elevated histamine, which perhaps is a factor in all of this. We are going to do antihistamines around the clock to see if that helps. Her provider had MRI results, which were read by a radiologist over the weekend. Everything is normal. No Chiari malformation, no growths, no bleeds, no sign of MS. The MRI did not have contrast as far as I know. I wasn't allowed to stay the whole time she was at imaging on Friday. 4 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 17, 2016 Author Share Posted October 17, 2016 I'm on hold trying to schedule an appointment with neurology. 3 Quote Link to comment Share on other sites More sharing options...
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