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I hope you all don't mind if I tantrum for a minute or two. Feel free to ignore me, that's what I do when my two year old tantrums.
Emma had a leg movement, like she hasn't had since she was in the hospital.
I e-mailed her doctor, just to make her aware. The movement stopped, there are no other symptoms (other than what she's been having) and she seems fine now. She didn't lose bowel control or anything like that, no other neurological symptoms, she's acting like a normal kid. Not even a spectacularly sick one (the Bactrin is working on the UTI.) I said right in the e-mail that I'm just letting her know and want to know if there's anything else I should watch for, that I do not want to take her in tonight.
What does her doctor suggest? The ER. And not only the ER, but that she needs a Neurology eval. Neurology is not going to evaluate her tonight. They would tell them to keep her overnight (no no no NOT doing that again) and then come poke and prod her in the morning. And then send us home because SHE'S NOT DOING IT ANY MORE! It lasted 2 1/2 or 3 minutes and was gone!
I told her no. I told her I am NOT putting my kids or myself through that (did I mention, we'd be waiting 5 hours while EVERY other patient went ahead of us because THERE'S NOTHING WRONG WITH HER RIGHT NOW) and just NO. Oh, and Bridget is in the middle of her nap. Also, I had MAJOR problems with the Neuro docs last time we were there and I do not even want to talk to them ever again (though I will if I absolutely HAVE to they did not endear themselves to me or to Emma and did not make me want to jump back into conversation with them.)
Sorry, not going to happen. I told her I will watch her and if anything else happens that hasn't been happening before or anything gets worse/more severe than it has been I will take her in but otherwise I am making a note of this and we're staying home. I already had to drag a screaming child out of the house yelling "No no no I don't want them to take my picture" and into the Imaging department for a renal ultrasound today, and I am just not taking her back to the hospital. No. No no no NO.
Okay, I feel a bit better. Sorry to dump on you, Hatrack. I'm a weeee bit overwhelmed lately.
Posts: 21182 | Registered: Sep 2004
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In fairness (or at least, pragmatism), once you've told your doctor about the symptoms, they probably have a liability/malpractice stake that makes it in their best interests to suggest that your child go under observation so you can't come back later and say "I told them about these symptoms and they didn't react with the alarm that was due!"
To be clear, that's not to say it isn't dumb, or completely frustrating to you. ERs are infamous for the frequency of excessive, unnecessary, and overly expensive care. I don't know if it's the slightest comfort to know where they're coming from, but I do "get" it.
Posts: 3826 | Registered: May 2005
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Well, luckily, an ER visit costs us $5 if she's released, nothing if she's admitted.
But it's very inconvenient. Especially right now when Jeff is working so late (so if I go to the ER it's with my mom, since we're a one-car family right now.)
She did have a few more episodes with the legs but after discussing with my mom (who is a pediatric nurse, BTW, and also called up the doctors she worked with) we have decided that as long as she's not in pain, doesn't spike a high fever (or temp drop really low, as has happened a few times), and doesn't lose bowel or bladder control, we will take her in to the pediatric walk-in tomorrow morning (where they can call Neuro if they have the overwhelming urge) because if we took her in tonight, they'd want to admit her tonight so that Neuro can look at her in the morning, and that just doesn't do anyone any good. I can observe her and make notes on her vitals and status at home, and take them with me in the morning.
Her doctor knows what has been going on and has been very involved. Frankly I think she is OVER-reacting, not under-. Because she knows that these symptoms are not dangerous to her (of themselves) and are mainly inconvenient.
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Yeah. We're just hoping that what is CAUSING these symptoms is not dangerous. Because we still don't know. And that is what is causing a lot of my anxiety/stress right now. I can deal with illness, with how to treat her, if I know what is causing it and what she needs. Even if it's chronic, I can come to terms with that. But I can't deal with "well, we have no clue what is going on, so, um, tell us if she does it again..."
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And if I wasn't completely clear, my sincere sympathies for your stress, and all my best wishes for Emma.
Posts: 3826 | Registered: May 2005
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Thanks. As soon as she wakes up, we're off to Pediatric Urgent Care again. *sigh* (But it's better than the ER at night.)
Posts: 21182 | Registered: Sep 2004
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KQ, I am COMPLETELY with you. I can't tell how many times I've called the doctor just to ask whether I should be worried about a particular symptom, and the nurses insist "we can't tell you anything unless you bring them in". Then I get there and the doctor says something like, "You don't need to bring them in unless they have a fever for seven days and you can't get rid of it. There's nothing we can do." It would've been nice if you could've told me that over the phone!!! Save me the money and, more importantly, the hassle!
Posts: 1522 | Registered: Nov 2005
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Part of the problem, though, is that HMOs don't pay doctors for phone consultations. So if a doctor spends the same mount of time with you, but does it in person, they make an extra sixty dollars or so. For primary-care physicians and pediatricians, which are generally underpaid and overworked, this can make a big difference.
KQ, I'm sorry for your troubles. Best wishes for your family.
Posts: 2907 | Registered: Nov 2005
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Well, we're back. Luckily that PUC takes appointments, so we didn't wait more than 5 minutes once we got there. And, we saw a doctor who my mom says is EXCELLENT (she knew him when she was a nurse at County and he was a med student, and has worked with him many times since.) Former head of Pediatrics, apparently. He's a ped. cardiologist and agreed with me that coming in last night would have been futile, put what she was doing in her record, and told me to keep my appointment with rheumatology. And sent us home without a Neuro consult (though I could tell he was considering it when I told him how much trouble I had with them and that I don't want to see them again unless it's absolutely necessary, he didn't make us do it), without hospitalization, without even a blood draw. Or a urine test. YAY. We actually spent more time waiting for Bridey to finish her snack and getting ready to go (they didn't want to because Shrek was playing in the overflow waiting area-- which they had all to themselves-- and they wanted to watch) than we did in with the doctor, but in that time he did a complete physical, noted her changed gait, and listened to my complete history (I have a calendar where I note everything that happens down. He actually complimented me on it.) EXCELLENT visit. I am so happy we did NOT go in last night. So is my mom.
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*hugs* I'm sorry you're still going through this. I surely hope they find out what's wrong with her soon. It is so frustrating and scary when they can't tell you what's wrong.
I hate to mention it, but have you guys considered getting an out of area opinion? The only reason I mention it is because my (former) step-daughter went for over six months in and out of Sacramento area hospitals without a diagnosis, and we got one within three weeks when she moved here.
I'm glad the Emma seems to be feeling better, even if her leg is being weird. Good luck!
Posts: 1321 | Registered: Jun 2006
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I had a minor health scare this morning, called the doctor as they were closing, she said to go to the ER. I know if I go to the ER it'll take 10 hours and they'll do nothing for it. I survived.
Posts: 5362 | Registered: Apr 2004
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quote:Originally posted by DDDaysh: I hate to mention it, but have you guys considered getting an out of area opinion? The only reason I mention it is because my (former) step-daughter went for over six months in and out of Sacramento area hospitals without a diagnosis, and we got one within three weeks when she moved here.
That's not really an option for us. We have coverage through Healthy Families with Kaiser. Luckily for us, my mom works for Kaiser. We put a written permission for her (and my dad) to have access to all information pertaining to Emma and having a mom who works for them and is a nurse, and a dad who is a doctor and can talk doctor talk with them, has been really helpful. My mom checks up on the doctors-- checking her file to make sure that referrals have been put in, etc. Also, the pediatrician/geneticist she works with (he's boarded in both) has permission to look at her file (she got us a form) and he has been making suggestions as well. Really, the thing is that she is not presenting with typical symptoms for any one known disorder/disease. So it's either atypical presentation, or 2 or more things going on, or (probably) both. So, we're waiting to get more opinions. And, if at least some of it is caused by a PANDA, which is still a possibility, it can take up to 8 weeks for these episodes to stop. So it may still go away on its own. Maybe.
My mom and her former boss think it might be rheumatic fever and a UTI presenting with neuro-psych symptoms (not unheard of.)
We'll see what the rheumatologist and nephrologist say. I did see that they found a white spot on one of her kidneys (actually several) so I've been googling "white spot on renal ultrasound" and of course scaring myself half to death (I really should stop doing that.)
Posts: 21182 | Registered: Sep 2004
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kq, that's not a fit at all. You have every right to be screaming your head off. I've been there - waiting for a diagnosis - and it's just terrible.
You are doing such a wonderful job. Keeping records is key, btw. The doctors and nurses will all love you for it and, honestly, take you much more seriously. I still take Aerin's with me whenever we see anyone. Also, trust your instincts. When one of the specialists (the "renowned" one ) wanted to embolize Aerin's hemangioma, I knew it was the wrong course and I was right.
We pray for you and Emma every single day. I wish I was there to bring you some pecan tartlets and rocky road brownies.
Posts: 3037 | Registered: Jan 2002
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Just wanted to let you all know that the renal u/s results are in, and apparently were negative for any cysts, stones, tumors, etc. (So apparently, the white spots on one kidney really were nothing to worry about, like the ped. said they might be, and my dad said they might be, and my mom said they might be...)
Also, the wonderful doctor we saw in Urgent Care CALLED today to see if she had had more episodes and make sure she was doing okay! I've NEVER had an Urgent Care followup call. Wow.
My mom says he's not well-liked... I don't know how he is with other staff but he's GREAT with me and my kid. If he wasn't a pediatric cardiologist rather than a general pediatrician I'd ask that she be transferred to him as her PCP despite the longer drive, but since she's not a cardio patient I think it's better she see a general pediatrician. (Not that I don't like ours most of the time but he was just so wonderful.)
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) wanted to embolize Aerin's hemangioma, I knew it was the wrong course and I was right. 
