Crohn's Disease Forum » Parents of Kids with IBD » OK, so, getting to the end of our rope, perspective needed.


 
01-15-2013, 02:24 PM   #241
jmckinley
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No, you were not wrong to go to the hospital. She is feeling better because of the Solu Medrol. My son didn't respond to prednisone either. But when I pushed the GI to admit him, they started Solu Medrol and Bam! Very quick improvement! Get those tests done and don't doubt yourself!

Thinking about you!
01-16-2013, 02:53 AM   #242
Patricia56
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Sorry it took IV meds to help her but I am glad she feels better.

As for second guessing, it's a time honored activity when sitting in a child's hospital room while the child who, just a short while before was in agony and clearly very ill, now seems just fine. Like the car making the noise that stops when you pull into the auto repair place.

I hope you will pardon this reality check but, the doctors are the ones really calling the shots (well the insurance company is calling the shots and the doctors are trying to make it work out right at least 50% of the time). She would not be in a bed with IV meds running if someone didn't seriously think she needed them. They would not have scheduled her for MRE, scopes, etc. unless they thought she needed them and could make a case for that to the insurance people.

So when they no longer think she should be there ---- they will tell you.

Until then, give that second guesser a rest or use it on the stock market or something productive like that.
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01-16-2013, 03:17 AM   #243
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Nope, definately need to be there. I am sure you are not the only one in there that questions it. I always feel like 80% of the kids in the wards I've stayed in with the kids look absolutely fine - playing in the playroom, smiling, eating, etc. I agree with Patricia - they would not have you there if not needed - docs are great for not admitting until they have too . You have the opportunity to get everything done, grab it with both hands - and try not to be too bored while you wait till friday. Good luck with the tests.
01-16-2013, 02:13 PM   #244
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ABSOLUTELY! Was just telling someone the other day how hard it is to get admitted and how they resist up a storm. She needs to be there. Look at how much better she got with the IV! That shows she needed it. Relax and enjoy the lack of drama...you have had plenty of it already. Good Luck with the imaging.

AND STAY AWAY FROM THE GERMS!!!!!!!
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01-16-2013, 02:45 PM   #245
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MRE was bad. She was prone and lots of pain after being still so long. She wanted to beg out before glucagon and contrast but I talked her into finishing. Scopes cancelled for now pending dxchg tomorrow.
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01-16-2013, 03:00 PM   #246
Patricia56
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Dxchg pending results of MRE is more like it.
01-16-2013, 03:20 PM   #247
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They haven't indicated it but I'm sure its a factor. As her labs are all clean, Sarah's reported symptoms seem to be driving. I spoke with Dr B in the radiology waiting room last night. I sent him an email asking if inpatient until Friday may not be necessary. He seemed pretty receptive to rescheduling Scopes and letting us out pending her progress, which works for us. We've had our fill of admissions.
01-16-2013, 04:55 PM   #248
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Thanks to everybody for moral support. Running on low sleep don't mean to seem ungrateful. :-)
01-16-2013, 05:07 PM   #249
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I asked for a printout of her labs which is apparently contraband at CHB now you're supposed to mosey over to medical records during an active admission. F that.

Despite being told she had no inflammatory markers, her CRP was 0.9 at admission down to 0.39 now.
01-16-2013, 05:12 PM   #250
jmckinley
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I'd say that's close to an inflammatory sign especially since it went down so much with the solu medrol.
01-16-2013, 05:34 PM   #251
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Now Dr B is back on the fence about keeping her for scopes. Seems to have waffled. He's keen to see stool but all she's passed since admission is miralax.

MRE normal small bowel normal stomach normal TI. Thickening of sigmoid and rectum.
01-16-2013, 07:52 PM   #252
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I hope you get out of there but I still think, after 5 years, scopes need to be done. She's having too many ongoing issues. You may be the greatest health advocate in the world but you don't have x-ray vision and neither do they. Good luck Muppet!
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01-16-2013, 09:41 PM   #253
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Turns out we're only 3 years from scopes my memory just sucks.

Starting to feel pressure at work for missing like 12 days this year already. Boss hasn't said anything but he can be very passive aggressive to put it mildly.

That and Lord, but driving in Boston makes me anxious like nothing else.
01-16-2013, 09:55 PM   #254
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And in any case scopes would be scheduled either way. There's no way we're not getting them.

With her pain and weird (not bloody, just weird) stools, having it done inpatient may be a good idea. I just worry about norovirus + scopes. Forgot to ask that question. I also forgot to ask what changed for him since last night or if it's just a change in his leaning.

Dr. B sort of shows up, delivers the message, and you've got to be prepared when he shows up or else. It's not that he doesn't listen, it's that everything seems to be shorthand for him. He's heard it all and knows what you're gonna say and isn't interested in all the qualifiers you want to offer with your statements. He can be very flustering for me since I qualify EVERYTHING with a dozen conditionals.
01-16-2013, 10:43 PM   #255
Patricia56
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write it out in bullet form.

then edit out half.

then edit out half again.

then maybe you will be ready for him.

then consider just handing him the piece of paper and saying Please read this first before we talk.
01-17-2013, 09:36 AM   #256
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The GI team came this morning and my wife and I video conferenced using Sarah's laptop and my phone. Gee, technology!

Anyway, now they're discharging her today again. The GI team at CHB seems pretty disorganized to me. They're sending her home with methyl-prednisone, which I have no experience with. Seems like we could have tried that before an admission and saved a lot of time, lost work, and a huge amount of money. Sarah's health and safety obviously come first but I feel like this was an overreaction in hindsight. She was never anemic, never dehydrated. I suppose her dramatic improvement on solumedrol was something that had to be found out, so there's that.

One issue is that she reports pain differently to us vs her doctors. She was reporting terrible (10) pain to us that motivated us to page Dr. B and drive her to Boston to be admitted, but upon arrival (after a 3 hour drive in a single position) reported a 7 to the doctors there and nothing higher than a 3 since (except during her MRI when she had to lay prone for a few minutes and I think she wanted out of that machine.)

Very frustrated, not wanting to second guess my daughter's reporting of symptoms, but it's very inconsistent and seems sometimes convenient. There was at least one occasion where she told a nurse she was feeling better then immediately after the nurse left told me she felt terrible. I know the pain comes in fits and starts and spasms, believe me, first hand, but I'm doubting her a bit lately.

The GI team cited some index whose name I don't recall as evidence that she could go home. Her score went from a 75 to a 15, whatever that means. I'm sure her reported pain on the pain scale is a multiplier in their rubric.

After our HSA/FSA debacle I now have to scramble to cover the gap as we've certainly maxed our deductible with this relatively unsatisfying hospital admission.

Scopes will be scheduled within a month or so.
01-17-2013, 09:54 AM   #257
xmdmom
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Pediatric Ulcerative Colitis Activity Index, perhaps?
http://www.nature.com/ajg/journal/v1...2010481t1.html

http://www.nature.com/ajg/journal/v1...l#figure-title
01-17-2013, 11:09 AM   #258
muppet
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Probably.

I'd have scored her at 60 at admission and probably 15 or 20 now. I guess it makes sense.

I think I'm lacking sleep more than anything. Sarah makes me a little nuts sometimes but I don't think she's being manipulative about her symptom reporting. I think she wants sympathy from mom and dad and to avoid more tests from docs, and she's a kid, so it goes.
01-17-2013, 12:41 PM   #259
Patricia56
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Differential pain reporting is not unusual. Hard to know exactly what is behind it with her. I get the same sort of thing with my son - he minimizes his pain to his doctors quite a bit. In his case I believe it is because he has several misconceptions or ideas about getting care that interfere with his accurate reporting.

1. He doesn't want to "bother" them because he knows for a fact that there are kids who are sicker than he is and he feels uncomfortable taking his doctor's time when he's not really that sick

2. He feels embarrassed and self-conscious about having to report things to do with his gut esp. w/perianal sx and stooling and would just as soon never have to discuss this with anyone ever again. He feels slightly less uncomfortable about this with me than with the doc.

3. His hx of invasive procedures and treatments have undoubtedly left him anxious, angry about the unfairness of it all and feeling sorry for himself to some extent. So if he reports truthfully to his doctor, he probably thinks that he will end up with more tests and new treatments he doesn't really want to get and that will make him feel worse than he already does.

4. There is of course the drama effect - getting attention from us parents. But I don't think this plays that big a role in my son's case. You will have to be the judge for your daughter.

5. Parents provoke emotional responses in us that no one else does. So some of it may simply be that our kids are able to be more objective about their symptoms with their doctor than with us - or vice versa - depending on the kind of attachment they have with us and their perception of their relationship with us and our expectations for their behavior.

That was interesting to think about. I wonder how or if this will change as my son enters adulthood and has to start negotiating these waters on his own.
01-17-2013, 02:21 PM   #260
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I am so sorry to hear of all you have been going through muppet.....and relieved to see that Sarah is feeling better.

Matt developed complications whilst on Pred, aside from IV Hydrocortisone, it never really was his saviour.

As to the pain, although I do look to numbers as a gauge I am wary of taking them at face value, far too much room for other factors to play a part. Certainly emotion is one but chronic pain can certainly paint a false picture too, not to mention how subjective a number is.
I look to the non-verbal signs of pain and how they marry with what is said when gauging pain. These type of things:

Facial expressions: Facial grimacing, agitated facial expressions, biting her lip.

Physical Changes: Changes in respiratory and heart rate, guarding the painful area, writhing, noticeable fall in energy and enthusiasm levels. Does the pain stop her from doing anything - walking, laying down straight, sitting.

Other Signs: Moaning and groaning, restlessness, constantly shifting position, general withdrawal symptoms, lack of interest in surroundings and change in appetite. Absentmindedly crumple fabric in her hands or toes so as to shift the stress caused by pain.

Thinking of you both.
Dusty. xxx
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01-17-2013, 03:16 PM   #261
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She's definitely got a spring in her step that was missing Monday.

We're on nearly 7 hours since she was told by GI team we're going home with no discharge order entered. This is depressingly typical.
01-17-2013, 07:41 PM   #262
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We're home. Sarah is apoplectic because she left behind the power brick for her laptop and I've told her the replacement is too expensive right now. She called the floor and was told to speak to the first shift in the morning.

Because of our FSA/HSA screw up, the medications they prescribed for us to follow up on are several hundred bucks rather than our usual copay, which I've now got to pull out of my butt.

I'm planning on going to bed early tonight. Ugh.
01-17-2013, 11:25 PM   #263
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Glad you are home. Get a good night's sleep and I hope things look much better tomorrow.
01-18-2013, 12:04 AM   #264
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Thanks for the update muppet.

I hope you are all able to get a decent nights sleep and things improve on the morrow. Good luck!

In my thoughts.
Dusty. xxx
01-18-2013, 12:33 AM   #265
Patricia56
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Hope you get some rest and find a certain bathroom appliance brimming with cash instead of water or any number of alternatives

01-20-2013, 01:53 PM   #266
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Just checking in to see how things have been going since you're home

01-20-2013, 02:36 PM   #267
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Hi Muppett,
Sounds like you guys had a rough week! I was barely on the computer all week it was very busy so am just trying to really catch up. I hope things are settling down with everyone. Don't second guess yourself on the hospital admission. You did what you felt was right at the time. Believe me been there done that!
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01-20-2013, 03:15 PM   #268
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We're fine, just chilling out a bit and recovering from a very hectic and stressful week. Sarah got her methyl-prednisolone and it seems to be helping better than the prednisone did.
01-20-2013, 07:03 PM   #269
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Glad yall are catching a breather and that she seems a bit better!

Hugs, J.
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01-25-2013, 05:01 AM   #270
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How are things going muppet?

Dusty. xxx
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