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


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So, I'm wondering if I can call the Patient Relations reps who came when I was upset and somehow get into GI sooner. Dd should have been seen by them while she was in patient. Instead we got a consult with Behavioral Health.

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I think this is a fantastic idea. I have been wracking my brains to think if I know of any connection, even remotely, a friend of a friend, or a friend's neighbor, who knows someone who could get you into GI sooner. I'm hoping a cancellation comes up quickly and you can get in sooner!

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I'm thinking back to a week ago right after dd was admitted to the children's hospital. The night shift attending pediatrician said he thought she needed MRI in the morning and a consult with both neurology and GI. In the morning neuro said they didn't need MRI because they were sure it was migraine. We never saw anyone from GI, even though dd's number one complaint was vomiting.

 

So, I'm wondering if I can call the Patient Relations reps who came when I was upset and somehow get into GI sooner. Dd should have been seen by them while she was in patient. Instead we got a consult with Behavioral Health.

 

This is such a ridiculous mess. Even with me actively pursuing assistance, we are not getting the care she needs. It shouldn't take eight visits and and in patient stay to misdiagnose her with migraine while failing to look at other options.

It can't hurt to try.

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She hasn't thrown up for 10 days. I wouldn't say she's 100% healthy, but she's definitely improved. She had her echocardiogram on Monday last week. She does have mild back-flow, but the cardiologist thinks she will grow out of it. It's something we will watch as she grows. Dd has gained weight since she stopped puking. She's now around 64 pounds.

 

I've been putting off starting my master's degree while all of this has been going on (the program can be started at the beginning of any month). Maybe things are stable enough now. My 16yo is having a hard time (mental health), but we've stepped up our outpatient treatment plan to hopefully keep him out of the hospital (did in patient last year--also in October). My sister (mom of five kids) is working on her doctorate right now and a few days ago she told me, "There's no perfect time for school." That's probably true.

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She hasn't thrown up for 10 days. I wouldn't say she's 100% healthy, but she's definitely improved. She had her echocardiogram on Monday last week. She does have mild back-flow, but the cardiologist thinks she will grow out of it. It's something we will watch as she grows. Dd has gained weight since she stopped puking. She's now around 64 pounds.

 

I've been putting off starting my master's degree while all of this has been going on (the program can be started at the beginning of any month). Maybe things are stable enough now. My 16yo is having a hard time (mental health), but we've stepped up our outpatient treatment plan to hopefully keep him out of the hospital (did in patient last year--also in October). My sister (mom of five kids) is working on her doctorate right now and a few days ago she told me, "There's no perfect time for school." That's probably true.

True, but I would say your last month has been harder than most. I'm struggling just getting prerequisites done part time. 

 

Glad she's turned the corner!

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This probably won't help you, but did anyone mention cluster migraines? My dd, now 17 (next month) was diagnosed when she was 6. The rolled on the floor in pain. They said it wasn't one conti uous mugraine, instead a cluster of them. Hers lasted 5 days. She also had neuro symptoms and was diagnosed with a murmur.

 

I feel your pain. It took me 4.5 years and 32 doctors before we got our diagnosis. I was also bullied. I told many doctors I was NOT going to blindly trust them when my gut was telling me sonethibg else was going on. I was quite pissed when they tried to diagnose her symptoms as psychiatric in nature. I knew they ware SO totally wrong and never gave that another thought.

 

Trust your gut. A mon just knows. I am so sorry you all are going through this and hope you get answere and an effective treatment soon.

 

My dd did outgrow her murmur.

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Dd got a cancelation appointment with the pediatric GI specialist today. He said we will go ahead and do an endoscopy and more bloodwork if dd starts vomiting again within the next three months. The scope would be to see if she has any damage or malfunction internally (e.g. silent reflux).

 

If she starts vomiting again after three months, we will have a visit to discuss our best options. For now he wants her on a strong probiotic and we'll just watch and wait to see how she does. He said some people's GI tracts stop functioning normally after a viral illness. That could be what happened here.

 

I'm glad to have a plan.

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