Paging Dr. Hive... (posting this from the children's hospital)

[Veritaserum]

All the docs from all the teams are saying dd doesn't need MRI because her symptoms don't match the types of things that MRI would show vs. the CT we already did. I feel bullied and like they think I'm stupid. They're willing to do it if it's the only thing that will get me on the same page, but the doc who was just in here cited decades of medical experience and lots of smart people looking at the case as reasons why I shouldn't push for one. She also said insurance might not pay for it and that dd would have a hard time with it.

 

They did find a UTI after culturing her urine (dip test was negative). So they're comfortable with calling this UTI + migraine + anxiety.

 

Dh feels comfortable skipping the MRI. It's not my first choice, but I can probably convince myself it's okay.

 

Neuro would want to see her in a month to check on her headaches. If she's still vomiting at that time they'd investigate other reasons for it (still not with MRI unless she has new symptoms). Right now they think the vomiting is related to UTI and/or migraine.

 

Thoughts?

[Lang Syne Boardie]

What's the next nearest children's hospital? Is it feasible to travel, if necessary?

 

I don't know about this type of illness, whether or not the plan is good from that perspective. But I do know you can't watch her stay this sick for another month, waiting on a follow-up appointment with a neuro who doesn't plan to do an MRI.

 

You need a plan for what to do if she's still sick tomorrow. And the next day.

[mommytobees]

Neuro would want to see her in a month to check on her headaches. If she's still vomiting at that time they'd investigate other reasons for it (still not with MRI unless she has new symptoms). Right now they think the vomiting is related to UTI and/or migraine.

 

Thoughts?

 

I think if they release her with this, I'd make plans to be back there 48 hours after she starts the abx if she continues to vomit.

 

I can understand being bullied by the medical staff. It sucks.

 

Kris

[ktgrok]

I'd be asking questions about "how long do we let her continue to vomit before we do something else?" and "how many  more days of this head pain and blurred vision in a row before we do something else?"

 

And asking about Chiari malformation in particular. 

[Teresa in MO]

I'm going to throw this out there.  I have a friend who quite a few years ago her daughter had violent vomiting episodes.  She searched for answers for a long time and her daughter was finally diagnosed with Cyclical Vomiting Syndrome.  It is similar to an abdominal migraine.  Be aware though that there are very few doctors who are actually familiar with this.  My friend searched for a long time for a doctor who dealt with patients with this and found one 3 hours away.

[Veritaserum]

Yeah, I definitely don't want to leave without a more specific plan than "come back if symptoms don't improve in 1-2 days." I want to know that if it's UTI-related vomiting, I should expect improvement after X days on abx. I want to know that if vomiting continues past that, the plan is to meet with ____ doctor to discuss ____.

 

The day nurse and new night nurse (shift change) agreed that my concerns regarding discharge instructions need to be addressed. The day nurse will be back on tomorrow.

[Another Lynn]

I"m so sorry.   :grouphug:   I have no advice, just hugs.  I hope the anti-biotic is not too hard on her stomach after all it's already gone through.  I'm not a medical person, but it seems there were a couple rare possibilities mentioned in the thread that an MRI would shed light on (differently than the CT)?  Would it be worth asking them about those conditions specifically?  Especially if symptoms return?

[calihil]

As an RN, if it were me or my daughter, I wouldn't be leaving that hospital until they did the MRI. Blurred vision, extreme headaches, and vomiting is just anxiety? Ugh. I'm so sorry they aren't taking you seriously. Go somewhere else. You are your own advocate.

[ktgrok]

Another question I'd have is "what symptoms WOULD indicate we need to do an MRI?"

[muttmomma]

I don't understand the reluctance for then to do an mri... It seems odd to me.

 

Our family dr ordered one for my husband who wad having constant headaches.

[eternalsummer]

Unless you are worried about the insurance not paying for it, if you think she needs an MRI, and the doctors are willing to do one at your insistence, why not?  If it is only that they are looking askance at you, don't let that stop you - the doctors' opinions of you don't really matter, right?

 

Has she vomited today?  Can they keep her for a couple of days while the antibiotic takes effect?  Surely at that point if it is caused by the UTI/anxiety and she has been medicated/treated for both, the vomiting and other symptoms will seriously diminish - if they don't, then they'll know it is something else.

 

I'd want a follow up appointment for much sooner than a month.

[PinkTulip]

I am so sorry you are going through this, and frustrated for you that you are getting the run-around. I think it is very easy for medical professionals to see each patient as another case, but for you, this is your little girl who has been not well for weeks now. I'm hoping the doctors will understand that perspective and not just dismiss this as a minor thing. Hang in there - you are doing the right thing by trusting your gut and advocating for your daughter!

[Joyofsixreboot]

All the docs from all the teams are saying dd doesn't need MRI because her symptoms don't match the types of things that MRI would show vs. the CT we already did. I feel bullied and like they think I'm stupid. They're willing to do it if it's the only thing that will get me on the same page, but the doc who was just in here cited decades of medical experience and lots of smart people looking at the case as reasons why I shouldn't push for one. She also said insurance might not pay for it and that dd would have a hard time with it.

 

They did find a UTI after culturing her urine (dip test was negative). So they're comfortable with calling this UTI + migraine + anxiety.

 

Dh feels comfortable skipping the MRI. It's not my first choice, but I can probably convince myself it's okay.

 

Neuro would want to see her in a month to check on her headaches. If she's still vomiting at that time they'd investigate other reasons for it (still not with MRI unless she has new symptoms). Right now they think the vomiting is related to UTI and/or migraine.

 

Thoughts?

My thoughts? I'd do the MRI or I'd not rest. I'm still praying for you both.

[Joyofsixreboot]

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.

Not to derail but that may be the best description of what it takes to be a mom in general I've heard whether you're dealing with doctors, teachers, psychologists, coaches or parents of bullies.

[Insertcreativenamehere]

I also don't understand their reluctance to do the MRI. You're the one paying for it, either directly or through insurance. If you want it, push for it! I know I'd want it to rule out anything more serious. 

[Veritaserum]

Dd didn't throw up last night. This is the longest she's gone in 20 days. Maybe it's over now. We won't know for a few days.

 

I'm pissed off at most of the doctors we saw yesterday, but if she's feeling well and we have a good discharge plan when/if symptoms return I think I want to go home. I don't trust any of them to look at anything else.

 

They never looked for anything else once they ruled out bleeding and masses with the CT. Neuro diagnosed her with migraines while she was still in the ER and they hadn't even seen her. Maybe they're right, but the way this all went down leaves me feeling extremely frustrated and dismissed.

 

The emergency department checked her for UTI on Wednesday. The dip was negative, but they cultured it anyway. Last night she started an antibiotic because something grew. She's not complaining of UTI symptoms at all. She was checked for UTI five or six days into the vomiting and the dip was negative then, too.

 

Her stomach and head hurt again last night, but Tylenol was sufficient to make her comfortable enough to fall asleep. Tylenol being effective for a migraine is laughable to me, but what do I know? I'm just a mom and a longtime migraine sufferer, not a team of "really smart people" with "decades of medical experience." (Paraphrased from my conversation with the resident yesterday evening during which she bullied me in an attempt to make me accept their diagnosis of migraine + UTI + anxiety.)

 

My 14yo (migraine) goes to the outpatient neuro clinic here, with which I previously had positive experiences. My feelings are decidedly mixed now.

[kitten18]

I'm so upset for you. It sounds so incredibly frustrating and infuriating.

[PinkyandtheBrains.]

I am really baffled why they are anti-MRI. It is illogical to me. Maybe someone with more medical experience here can explain that.

 

 

Our doctor here would've ordered an MRI by now, I am sorry how incredibly frustrating this is.

[happi duck]

(hugs)

[Veritaserum]

I asked to speak to someone in Patient Relations. A representative is supposed to come to dd's room. I don't expect it to really do anything, but I want someone to hear that I am leaving dissatisfied and upset. That conversation last night with the chief resident is still echoing in my ears. A parent should not feel bullied or shamed into deferring to their child's medical team.

[Tiramisu]

Make it clear that if you go home and she vomits again, you will come back immediately.

 

It might just be with older people, but isn't there some significance to re-admits within a few days, like a failed discharge that can cause problems with insurance for the hospital? I have some memory of having that issue but it was with older relatives.

[kitten18]

I asked to speak to someone in Patient Relations. A representative is supposed to come to dd's room. I don't expect it to really do anything, but I want someone to hear that I am leaving dissatisfied and upset. That conversation last night with the chief resident is still echoing in my ears. A parent should not feel bullied or shamed into deferring to their child's medical team.

When my dd was in the NICU we had a NP that was in charge of communicating with us. She almost acted as a liaison. Gathering info from the different specialties and then presenting/explaining it to us.

 

ETA - I didn't finish my thought. She was much easier to deal with. We could have a real conversation, she didn't just talk AT us like the Drs.

Edited October 14, 2016 by kitten18

[PeachyDoodle]

I'd push for the MRI. What did they mean that your dd won't do well with it? (Sorry, I'm paraphrasing what you said from memory. Disregard if I'm wrong.)

 

If you do accept the diagnosis, I would definitely return the second she starts vomiting again. But I'm glad she has made it this far without an episode. Maybe there is a light at the end of the tunnel!

 

Keeping you and your dd in my prayers.

[gardenmom5]

hugs.

tylenol for migraine is laughable to me too. (also a migraine sufferer.)  the only otc that ever helped was excedrin (because of the caffeine.)

 

one thing I've learned - drs (*especially* unteachable ones, regardless of age), can become @$$holes if they can't figure things out.  they've been taught they're supposed to figure things out, and it's almost like they blame the patient if they can't.  and they will grab at something - just to say they diagnosed it.

 

eta: at this point, I'd want the professors teaching/researching - not some resident.

Edited October 14, 2016 by gardenmom5

[Katy]

This is a teaching hospital, so the residents are morons for a good six months until they all screw up in a major way.  They might have memorized more crap than you, but they sure don't know your child or migraines better than you do right now.  They're all morons.  By January they'll start to get smarter, humbler, and they will have gone through enough humiliating experiences (by being wrong when mothers and patients were right), that they'll calm down.  In the mean time, you don't want your daughter to be one of the mistakes.

 

A migraine can only be diagnosed when they've ruled out everything else. They cannot rule out everything else until they've done an MRI.

 

Make it very, very clear to the patient advocate that if she does have some rare brain tumor that they didn't find because they refused to take the time to do an MRI, you will make it your mission in life to get every doctor (who refused an MRI) license to practice medicine revoked. An MRI is common sense.  They do not diagnose an older teen or adult with migraines without an MRI, and they shouldn't diagnose a child without one either.

 

Having said that, it is possible (perhaps even probable)  that she had some short virus and got caught in a cycle of vomiting that couldn't end until she got rehydrated. It's very common, especially in teen girls.  In my family even the men have it (my brother, one nephew) - if they vomit more than 3 times, chances are high it won't end until they get IV rehydration. 

[prairiewindmomma]

I asked to speak to someone in Patient Relations. A representative is supposed to come to dd's room. I don't expect it to really do anything, but I want someone to hear that I am leaving dissatisfied and upset. That conversation last night with the chief resident is still echoing in my ears. A parent should not feel bullied or shamed into deferring to their child's medical team.

 

I am glad you are doing this.

[mommymonster]

I'm sorry the resident gave you a hard time. We also had many problems with crappy residents/students. My sister is a RN and gave me the following "order of escalation" in case of obnoxious residents:

 

1. Resident's attending (if that person doesn't deal with it, go to 2)

2. Chief of Staff

3. House Supervisor

 

[prairiewindmomma]

and WTH that a RESIDENT is bullying you.  I'd lodge a complaint with the department chair about said resident.

 

I'd be pushing for a MRI and EEG.  Remind them that this wasn't just headache, blurred vision, and vomiting, it was also motor weakness and motor planning difficulty.

 

I've BTDT as the mom of a kid with a brainstem tumor.  Not all lesions show up in CT.  I'm sure they're arguing that the CT was sufficient.  Frankly, the risk was in doing the CT; there's no risk to patient in doing a MRI (or rather the risk is in the anesthesia if anesthesia is necessary for her to hold still in the scanner).

 

Even if it's a basilar hemiplegic migraine, you'd still want to walk out knowing that other stuff has been conclusively ruled out, otherwise you're just spinning your wheels at the headache clinic.  You'd at least know then that you should be looking at stuff like valproic acid or a calcium channel blocker for preventative.

 

Why in the world was neurology not called up for a consult in the middle of this????

[Katy]

Sometimes the nursing floor supervisor (or manager, if you're there during the day on a weekday) can help you escalate it too.

[Veritaserum]

Just met with them. It went well. She's getting MRI today if possible. If they can't fit her in, we will have an outpatient appointment.

 

They're going to speak to that resident about what she said last night, too. She was the chief resident, which makes it worse, IMO. She should know better.

[Veritaserum]

and WTH that a RESIDENT is bullying you. I'd lodge a complaint with the department chair about said resident.

 

I'd be pushing for a MRI and EEG. Remind them that this wasn't just headache, blurred vision, and vomiting, it was also motor weakness and motor planning difficulty.

 

I've BTDT as the mom of a kid with a brainstem tumor. Not all lesions show up in CT. I'm sure they're arguing that the CT was sufficient. Frankly, the risk was in doing the CT; there's no risk to patient in doing a MRI (or rather the risk is in the anesthesia if anesthesia is necessary for her to hold still in the scanner).

 

Even if it's a basilar hemiplegic migraine, you'd still want to walk out knowing that other stuff has been conclusively ruled out, otherwise you're just spinning your wheels at the headache clinic. You'd at least know then that you should be looking at stuff like valproic acid or a calcium channel blocker for preventative.

 

Why in the world was neurology not called up for a consult in the middle of this????

Neurology was called in, but after talking to the attending pediatrician I think they were there to confirm somebody's hunch of a migraine (because she responded to the meds they gave in the ER). They definitely were NOT there with an open-minded view of it could be migraine or X or Y. The neuro exam showed normal motor function. Which, yeah, she's fine right now. Is she going to stay fine? No one knows. I'll sleep better with the MRI all clear. If it shows something, well, then, it proves to everyone that they shouldn't be dismissive *%%es about things like this.

[LMV]

Make it clear that if you go home and she vomits again, you will come back immediately.

 

It might just be with older people, but isn't there some significance to re-admits within a few days, like a failed discharge that can cause problems with insurance for the hospital? I have some memory of having that issue but it was with older relatives.

CMS hasn't really taken over the pediatric world so they would not be penalized for that 30 day readmit.

[Veritaserum]

MRI at 4:30. I don't think we will know until afterward if we are going home tonight or not.

[LMV]

I'm glad you're getting the MRI. I also really hope it is normal but if it is that will not negate that it was necessary.

[lovinmyboys]

Yeah I am another one that is confused about why they wouldn't do an MRI. I could see them not wanting to do a CT because of the radiation, but MRI is safer. Maybe their MRI is really booked?

 

I am sorry you are going through this. We have an amazing children's hospital here and I guess I just assumed all children's hospitals would be of similar quality. (One of my kids was seen at a regular hospital ED and I felt like he wasn't treated very well. I have always taken them to a children's hospital since then. I guess that isn't always a guarantee of good care).

[Matryoshka]

Make it very, very clear to the patient advocate that if she does have some rare brain tumor that they didn't find because they refused to take the time to do an MRI, you will make it your mission in life to get every doctor (who refused an MRI) license to practice medicine revoked. An MRI is common sense.  They do not diagnose an older teen or adult with migraines without an MRI, and they shouldn't diagnose a child without one either.

 

 

This.  

 

I have a friend whose dd had totally different symptoms than yours, but she had a mama instinct that all was not well.  Her dd did not grow at all for FIVE YEARS.  From 9-14.  No signs of puberty, not even a hint.  She was thirsty all the time.  They did blood tests, and said all was fine. This mom went to all kinds of specialists including at big-name children's hospital. Mom asked for a brain scan multiple times.  But they dismissed all her concerns and the only thing they suggested was that she could get hormones to start puberty.  

 

Finally she started getting blurred vision, and they got a brain scan.  Pituitary tumor, which by this point of course had spread.  Very good cure rate if you catch it early, but they hadn't.  She just finished treatment, and they are hopeful she'll survive, but she'll need to be on replacement hormones for pretty much everything for the rest of her life, because her pituitary is gone. 

 

 

Having said that, it is possible (perhaps even probable)  that she had some short virus and got caught in a cycle of vomiting that couldn't end until she got rehydrated. It's very common, especially in teen girls.  In my family even the men have it (my brother, one nephew) - if they vomit more than 3 times, chances are high it won't end until they get IV rehydration. 

 

 

And this.

 

It's probably not a brain tumor. There's very most likely a much more benign reason for all this, which is why they're playing the odds and don't want to do the scan. But for heaven's sake, rule it out, dumb doctors.  I'd insist on the MRI and give them the scary talk Katy suggested if they give you a hard time.

 

Edited October 14, 2016 by Matryoshka

[Matryoshka]

MRI at 4:30. I don't think we will know until afterward if we are going home tonight or not.

 

Oh good.  I was posting when you posted this.  Hope it rules everything scarier out and it was just virus or migraine.

[gardenmom5]

hope everything goes well with the MRI.  and that you have a better idea of what is going on.  suspense really is the worst.

[RioSamba]

I'm so glad that DD will have the MRI. You must be exhausted after dealing with the obnoxious residents on top of all the worry and stress you already have!

[Rebecca]

I am also so glad this ended with a scheduled MRI. Praying!

[mommytobees]

Am I the only one who keeps coming back to this thread.....hoping to see an update on the MRI?

 

Kris

[PeachyDoodle]

Am I the only one who keeps coming back to this thread.....hoping to see an update on the MRI?

 

Kris

 

Nope... me too. Praying they got the all-clear this afternoon.

 

[mysticmomma]

Nope. Me too.

[AnnE-girl]

Checking in also. Praying for good news.

[ktgrok]

Me too. Hoping it show zero problems and they can go home and rest. 

[fraidycat]

Hoping for a positive update.

[Veritaserum]

The resident read the MRI and didn't see any red flags. It may be a few days before a specialist reads it. I'm not worried about imminent danger, so we agreed to discharge. We will meet with neurology again in a month unless the MRI results indicate she should be seen sooner.

 

Dd is thrilled to be going home.

[maize]

Thanks for the update.

[ktgrok]

Glad it got done. glad you are going home, and praying everyone gets a good night's sleep with no more vomiting. 

[mommytobees]

Well, good! Here's to hoping for a radiologist and neurologist both finding nothing much!

 

I'm praying that they can figure out what is causing it, but still want the MR to be clear.

 

Kris