mommytobees Posted October 12, 2016 Share Posted October 12, 2016 {{{hugs}}} Laura, I am so sorry that you daughter's going through all of this. I pray they can get her MR sooner rather than later. My son has had more MR's at 2am than during daylight hours. Praying for her. Kris Quote Link to comment Share on other sites More sharing options...
LifeLovePassion Posted October 12, 2016 Share Posted October 12, 2016 I'm so glad she is getting admitted. I hope you get some answers and relief for her. Quote Link to comment Share on other sites More sharing options...
Anne Posted October 12, 2016 Share Posted October 12, 2016 I am so sorry! ðŸ™ðŸ™ðŸ™ðŸ™ðŸ™ Praying and sending hugs~~~ Anne Quote Link to comment Share on other sites More sharing options...
RioSamba Posted October 12, 2016 Share Posted October 12, 2016 Very glad to hear she's being admitted. Sending all best wishes for relief and answers. Quote Link to comment Share on other sites More sharing options...
displace Posted October 12, 2016 Share Posted October 12, 2016 Sounds like you're on the right track. Even for major hospitals it can be difficult to achieve things on the weekends so I'd push for the MRI before then unless they can do things on weekends. She'll probably feel better on fluids. I hope you get some answers. Quote Link to comment Share on other sites More sharing options...
nd293 Posted October 12, 2016 Share Posted October 12, 2016 I've been following your posts about your daughter. I am thinking of your daughter, but also of you, and how you are feeling. Do take care of yourself as best you can. You must be beyond exhausted. 5 Quote Link to comment Share on other sites More sharing options...
fraidycat Posted October 12, 2016 Share Posted October 12, 2016 :grouphug: :grouphug: What a scary situation. I'm glad they are admitting her and hopefully you can get answers and a viable treatment plan soon. Quote Link to comment Share on other sites More sharing options...
emmaluv+2more Posted October 12, 2016 Share Posted October 12, 2016 You are all in my thoughts. I can't even imagine... Quote Link to comment Share on other sites More sharing options...
PinkTulip Posted October 12, 2016 Share Posted October 12, 2016 I'm so glad to hear she was admitted. I hope she can have an MRI and some answers soon. Huge hugs! Quote Link to comment Share on other sites More sharing options...
AnnE-girl Posted October 13, 2016 Share Posted October 13, 2016 Praying you get answers and treatment that leads to a swift recovery for your girl. ((Hugs)) Quote Link to comment Share on other sites More sharing options...
zoobie Posted October 13, 2016 Share Posted October 13, 2016 :grouphug: I hope you get relief and some answers. Quote Link to comment Share on other sites More sharing options...
Sara in AZ Posted October 13, 2016 Share Posted October 13, 2016 Thinking of you and your poor DD, also. 😢 Quote Link to comment Share on other sites More sharing options...
Katy Posted October 13, 2016 Share Posted October 13, 2016 So glad she's been admitted. Praying they find the right answer, soon. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 13, 2016 Share Posted October 13, 2016 Keeping you and your dd in my thoughts and prayers! Quote Link to comment Share on other sites More sharing options...
calihil Posted October 13, 2016 Share Posted October 13, 2016 How scary! Praying for your girl. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted October 13, 2016 Share Posted October 13, 2016 I am praying that the doctors find out what is wrong and she gets help. Very glad that she was admitted. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted October 13, 2016 Share Posted October 13, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
purpleowl Posted October 13, 2016 Share Posted October 13, 2016 I feel so very frustrated on your behalf! I'm glad she's been admitted and I hope you have answers (clear, treatable answers!) very soon. *hugs* Quote Link to comment Share on other sites More sharing options...
Lang Syne Boardie Posted October 13, 2016 Share Posted October 13, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 Dd is settled into her room. It's a teaching children's hospital, so I've given her history many times today. Everyone is stumped so far. Most likely she'll be getting an MRI under sedation in the morning (neurology will weigh in on that). She'll probably also get a consultation with GI. She's allowed to eat whatever she wants tonight. She ordered a bunch of baked goods because they sounded good to her very empty stomach. At the moment she's watching Harry Potter and she's feeling okay-ish even though she'd much rather be home. I'll be sleeping here tonight. They have a couch/bed in her room, but I wore jeans today. :-/ I'm going to ask my mom or my husband to bring me some comfy yoga pants tomorrow. And I really don't care if anyone objects to "athletic wear" being worn while not exercising. :p Thanks for supporting me through this. :) 36 Quote Link to comment Share on other sites More sharing options...
happi duck Posted October 13, 2016 Share Posted October 13, 2016 (hugs) Quote Link to comment Share on other sites More sharing options...
LifeLovePassion Posted October 13, 2016 Share Posted October 13, 2016 Ask if they have some scrubs you could wear. 1 Quote Link to comment Share on other sites More sharing options...
JustEm Posted October 13, 2016 Share Posted October 13, 2016 Ask them if they have any scrubs you can borrow. Our hospital always give dh a pair to wear while in the OR for my csections. Quote Link to comment Share on other sites More sharing options...
displace Posted October 13, 2016 Share Posted October 13, 2016 GL with the MRI. Nobody will care what you're wearing!! Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 Neuro nixed the MRI for now. They want to examine her first. I've had hundreds of migraine. She didn't throw up last night, so perhaps the migraine cocktail they gave her helped in some way. Or perhaps this is another 36 hour break in the action. Too early to tell, IMO. Quote Link to comment Share on other sites More sharing options...
PinkTulip Posted October 13, 2016 Share Posted October 13, 2016 I'm sorry about the MRI, but glad to know she didn't throw up. Hopefully today will bring some good answers for this. Hang in there! Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted October 13, 2016 Share Posted October 13, 2016 Praying for the doctors to provide an accurate diagnosis and quick treatment to restore your dd's health. (((hugs))) Quote Link to comment Share on other sites More sharing options...
muttmomma Posted October 13, 2016 Share Posted October 13, 2016 Bless her heart, and yours. I've been in similar medically frustrating situations with my daughter. Breathe. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 My earlier post didn't make a lot of sense. Ha. Everyone who comes into her room is hearing about my frustration. I know we're going to get a massive bill from neurology. I want them to do a thorough work-up instead of trying to push this onto migraine. My gut says this is not migraine. I'm willing to accept that I could be wrong, but just do the @&$!-ing MRI already. 3 Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted October 13, 2016 Share Posted October 13, 2016 I am so sorry that your dd and you are going through this. I pray that the doctors will be able to figure out exactly what is going on and treat it. Quote Link to comment Share on other sites More sharing options...
sassenach Posted October 13, 2016 Share Posted October 13, 2016 My earlier post didn't make a lot of sense. Ha. Everyone who comes into her room is hearing about my frustration. I know we're going to get a massive bill from neurology. I want them to do a thorough work-up instead of trying to push this onto migraine. My gut says this is not migraine. I'm willing to accept that I could be wrong, but just do the @&$!-ing MRI already. Stay strong, keep insisting! I wouldn't be above laying down threats. Bring patient relations into it. Just try, I know it's hard, to keep your emotions even. Hysterical mothers get written off, eerily calm but threatening mothers get what they want. The trick is to look like you'd be a good witness at trial. 8 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 13, 2016 Share Posted October 13, 2016 It may help to say, "I agree it could be migraine. Even that it is i probably an atypical migraine attack. But given the rare but serious possibility of something else, I really need the MRI so we know for sure. If it is a brain tumor, leaving it could make it worse, and I need to know that isn't the case. I'm not doubting that you are probably right, I just need to KNOW that you are right." 4 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 13, 2016 Share Posted October 13, 2016 (edited) We have a boardie with a daughter with Chiari malformation,with some similar symptoms. Not sure if CAT rules that out or MRI is needed. (also not sure it's even on the table, I don't know enough about it) http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#3087_4 Edited October 13, 2016 by ktgrok Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 We have a boardie with a daughter with Chiari malformation,with some similar symptoms. Not sure if CAT rules that out or MRI is needed. (also not sure it's even on the table, I don't know enough about it) http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#3087_4 That's interesting. Dd was diagnosed with mild scoliosis at her well checkup last month. It's one of the conditions associated with Chiari. 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 I attended births as a doula for several years, so I have experience balancing firm and nice. My friend (also a doula) gave me a mantra to repeat today about recognizing the medical staff's humanity while insisting on appropriate care for my child. It's really sobering being here, though. Another child in dd's unit coded this morning. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 13, 2016 Share Posted October 13, 2016 That's interesting. Dd was diagnosed with mild scoliosis at her well checkup last month. It's one of the conditions associated with Chiari. Definitely worth bringing up then. And it seems the MRI is the gold standard for that diagnosis. Possibly while in various positions I want to say, but could be wrong. Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted October 13, 2016 Share Posted October 13, 2016 My son has a diagnosed neurological condition which tends to co-exist with Chiari malformations, I was told by the neurologist that an MRI would be needed in a few years to check for chiari malformations and my ds does not even have any symptoms of it. I would think your dd's symptoms would indicate an MRI is a reasonable request. Definitely, a challenge to be calm & positive while trying to convince the medical team that an MRI needs to happen, NOW! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 13, 2016 Share Posted October 13, 2016 Praying you get answers soon. My daughter has migra-seizures and Chiari I. You need an MRI and check for cerebral spinal fluid flow. Ask for an EEG as well. 1 Quote Link to comment Share on other sites More sharing options...
mommytobees Posted October 13, 2016 Share Posted October 13, 2016 It's really sobering being here, though. Another child in dd's unit coded this morning. One of the hardest parts about being in the hospital ended up being the other children on the floor. My son was in isolation, so he wasn't going out of his room until the last 5 days....and as a 17yo boy he wasn't interested in seeing the other kids anyway LOL. But, there were so many really sick kids and my kid was in the hospital for unknown origin vomiting and images on a CT of his brain. Hospitals suck. Kris Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 Still waiting for neurology. Saw the pediatric team. They summarized all the normal test and lab results and said they're out of their league for what to recommend until we get visits from psych and neurology. The psych visit is to investigate the possible connection between her symptoms and her anxiety/depression. I don't think that's our answer, but I agreed to investigate it. Quote Link to comment Share on other sites More sharing options...
RioSamba Posted October 13, 2016 Share Posted October 13, 2016 Ugh! I suppose they have to,ask some questions, but several doctors wanted to pin a psychiatric diagnosis on our niece before she was finally diagnosed with Superior Mesenteric Artery Syndrome. Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 One person from neuro came by to go over symptoms and history again. I emphasized my desire to be thorough just to make sure we don't miss anything. She's going to go back to the team to discuss a plan. 4 Quote Link to comment Share on other sites More sharing options...
maize Posted October 13, 2016 Share Posted October 13, 2016 How is your dd doing today? Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 She's eating a ton: two breakfasts, a snack, and two lunches so far. "Apart from all the needles and feeling sick, the hospital is pretty nice." We just got a visit from psych to discuss Somatic Symptom Disorder (physical symptoms caused by mental health). I'm not enthusiastic about that. We also discussed ways of managing her anxiety and depression. I just don't want all of this to be dismissed as psychological. 2 Quote Link to comment Share on other sites More sharing options...
melmichigan Posted October 13, 2016 Share Posted October 13, 2016 My daughter couldn't be diagnosed with migraines until she had a normal MRI, just saying. It's a rule out diagnosis, and without an MRI you can't rule out everything brain related. 1 Quote Link to comment Share on other sites More sharing options...
maize Posted October 13, 2016 Share Posted October 13, 2016 I definitely wouldn't want the whole problem to be basically written off as psychological. And gosh, the stuff we usually call psychological is plenty physical itself. People who want to dismiss any of it as "all in your head" are never helpful. It sounds like you are being a great advocate for your daughter. Keep it up mama! 1 Quote Link to comment Share on other sites More sharing options...
Veritaserum Posted October 13, 2016 Author Share Posted October 13, 2016 My daughter couldn't be diagnosed with migraines until she had a normal MRI, just saying. It's a rule out diagnosis, and without an MRI you can't rule out everything brain related. Right? When my 14yo first started getting migraines, we did an MRI and then treated migraines after that came back normal. 2 Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted October 14, 2016 Share Posted October 14, 2016 I'm so frustrated for you! Can we get a bus of moms to picket outside the hospital for an MRI?!!! 2 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 14, 2016 Share Posted October 14, 2016 Also, I don't know where you are, but if you are anywhere near me, I'd be happy to bring comfy clothes, a meal, or just some moral support. 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted October 14, 2016 Share Posted October 14, 2016 I'm so frustrated for you! Can we get a bus of moms to picket outside the hospital for an MRI?!!! Seriously. Count me in. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.