OK, so, getting to the end of our rope, perspective needed.
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Fingers crossed here as well.
Sorry About the vaccine post -- opps I thought I was in the flu shot thread .
Phone had me confused.
Sorry About the vaccine post -- opps I thought I was in the flu shot thread .
Phone had me confused.
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Izzy woke up late from her nap today and had the most frightening tantrum/freakout I've seen her have in a VERY long time. The sort of thing that makes me wonder if the autism diagnosis we scoffed at could have something to it, if only a little. I think she's fed up with 5 days of being sick and is at her wit's end. If she's not better soon I'll have to call the pediatrician and I hate to do it because he sucks. I just haven't pulled the trigger on firing him yet because I have no strong replacement candidate.
She finally calmed down and went downstairs to cuddle with Mommy and watch TV after 10 solid minutes of screaming and crying on her bed and refusing to be touched.
Sarah was craving chicken fingers from a particular small chain takeout place we have here so when I took her to get that (sympathy spoiling), we stopped at Toys R Us and got Izzy a bucket of toy dinosaurs for a few bucks. They seem to have brightened her evening somewhat considerably, although to be fair by the time we got back she had already built a "train" out of a paper towel pack and a bunch of toy bins with Mommy.
She finally calmed down and went downstairs to cuddle with Mommy and watch TV after 10 solid minutes of screaming and crying on her bed and refusing to be touched.
Sarah was craving chicken fingers from a particular small chain takeout place we have here so when I took her to get that (sympathy spoiling), we stopped at Toys R Us and got Izzy a bucket of toy dinosaurs for a few bucks. They seem to have brightened her evening somewhat considerably, although to be fair by the time we got back she had already built a "train" out of a paper towel pack and a bunch of toy bins with Mommy.
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Glad you are home and recovering. What a bum couple of days you've been having! I hope things are on the upswing soon!
Ryan has this great pill box. It has a.m. and p.m. for each day. What I love is that each day pops out, so if he spends the night out he can just take it with him!
Ryan has this great pill box. It has a.m. and p.m. for each day. What I love is that each day pops out, so if he spends the night out he can just take it with him!
I am no stranger to mystifying and destructive IRS regs/rules that also make the word obscure seem transparent.
So I did a little looking over at irs.gov and even now am scratching my head. Truthfully, I think you need to speak with an accountant who really knows about health plans and not just take your company's word on what's what.
However, I think the issue is summarized by these two IRS Bulletins that basically say you can have more than one kind of account but if you have a cafeteria plan then the FSA is treated as secondary insurance and can only be used for things your primary insurance will not cover like vision and dental coverage. The exact details are determined by the way your employer chose to set things up when they converted to a cafeteria plan I think.
BUT
if my reading of this stuff is right, once you have exhausted the HSA you should be able to use the FSA funds without those restrictions.
The problem with this interpretation is that you may have to meet your HDHP deductible before you can use the FSA $$. Which I assume would leave you with a doughnut hole.
There is one arcane situation in which you can transfer $$ from an HSA to an FSA but I am pretty sure you won't qualify. It is described in Pub 969 the IRS publication that covers HSAs, FSA, and such.
http://www.irs.gov/pub/irs-pdf/p969.pdf
IRS bulletin 2008-29 HSA's
http://www.irs.gov/irb/2008-29_IRB/ar11.html#d0e1355
IRS Bulletin 2005-49 this bulletin may apply if your employer is in transition on a Cafeteria plan
http://www.irs.gov/irb/2005-49_IRB/ar08.html#d0e1151
So I did a little looking over at irs.gov and even now am scratching my head. Truthfully, I think you need to speak with an accountant who really knows about health plans and not just take your company's word on what's what.
However, I think the issue is summarized by these two IRS Bulletins that basically say you can have more than one kind of account but if you have a cafeteria plan then the FSA is treated as secondary insurance and can only be used for things your primary insurance will not cover like vision and dental coverage. The exact details are determined by the way your employer chose to set things up when they converted to a cafeteria plan I think.
BUT
if my reading of this stuff is right, once you have exhausted the HSA you should be able to use the FSA funds without those restrictions.
The problem with this interpretation is that you may have to meet your HDHP deductible before you can use the FSA $$. Which I assume would leave you with a doughnut hole.
There is one arcane situation in which you can transfer $$ from an HSA to an FSA but I am pretty sure you won't qualify. It is described in Pub 969 the IRS publication that covers HSAs, FSA, and such.
http://www.irs.gov/pub/irs-pdf/p969.pdf
IRS bulletin 2008-29 HSA's
http://www.irs.gov/irb/2008-29_IRB/ar11.html#d0e1355
IRS Bulletin 2005-49 this bulletin may apply if your employer is in transition on a Cafeteria plan
http://www.irs.gov/irb/2005-49_IRB/ar08.html#d0e1151
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Thanks Patricia!
I got my employer to lower my FSA limit, which was SOMETHING. I can take the difference and bank it toward medical stuff, I just lose the tax deduction on it.
The part about meeting the deductible is a little ambiguous. Do they mean that you must have satisfied the deductible from the insurer's point of view, or your own point of view? By that I mean, once Aetna processes $3000 worth of claims from me, they will begin to pay benefits out. At that point, can I turn around and use the FSA to pay the $3000 worth of bills I am about to receive, or do I have to pay them before the FSA is "unlocked"? If the latter, how would they even audit that?
Anyway, it's moot as I've carved the FSA down to what I can actually use on vision and dental, and we'll have to deal with the gap (about $1000) ourselves out of pocket without a tax break. Such is life.
I got my employer to lower my FSA limit, which was SOMETHING. I can take the difference and bank it toward medical stuff, I just lose the tax deduction on it.
The part about meeting the deductible is a little ambiguous. Do they mean that you must have satisfied the deductible from the insurer's point of view, or your own point of view? By that I mean, once Aetna processes $3000 worth of claims from me, they will begin to pay benefits out. At that point, can I turn around and use the FSA to pay the $3000 worth of bills I am about to receive, or do I have to pay them before the FSA is "unlocked"? If the latter, how would they even audit that?
Anyway, it's moot as I've carved the FSA down to what I can actually use on vision and dental, and we'll have to deal with the gap (about $1000) ourselves out of pocket without a tax break. Such is life.
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Agree Patricia is great
Hope you guys r feeling better
Muppet were u able to get company to make changes?
If I understand correctly, hsa covers all qualified med expenses including vision and dental the plus of hsa is that it is yours and moves with u like a 401k. Also u can build balances and invest the funds once they get over a certain amount. We maxed our contribution last year which is good because there are funds in there to cover H's remicade last Monday. We hit the family deductible of our high deductible plan in the first week of the year. We will continue to fund the max... I think of it like 401k money except we get to use it in the short term rather than years from now.
Hope you guys r feeling better
Muppet were u able to get company to make changes?
If I understand correctly, hsa covers all qualified med expenses including vision and dental the plus of hsa is that it is yours and moves with u like a 401k. Also u can build balances and invest the funds once they get over a certain amount. We maxed our contribution last year which is good because there are funds in there to cover H's remicade last Monday. We hit the family deductible of our high deductible plan in the first week of the year. We will continue to fund the max... I think of it like 401k money except we get to use it in the short term rather than years from now.
Taking pills = last thing before bed, as climbing into bed, totally tie it to being taken at bed time if possible when it's an essential med and there's an issue with missing it.
And missing one day is not a big deal. But you do need a significant level of compliance for it to be effective, I'd guess at least 85% or more (no one heard me say less than 100% OK?) and if her remission is fragile then obviously 100% is what's really needed.
Is there a chance that her "fragile" remission is really due to poor compliance? If so, maybe it's time for a heart to heart with her about that and an explanation of how the medication works to help her stay well.
The problem is that there's no immediate feedback to reward her for her efforts to be compliant. So you may have to come up with an external reward. You know your kid and whether it would have to be weekly, monthly whatever. Might just be a dish of ice cream together to celebrate a week well done.
Together you count the number of pills in the pill box at the end of each week - unless you think she might toss them I guess. I have a kid who would think of that although I don't think he'd actually do it since he knows he'd lose many things for many months...
Incremental approach is best if she's currently missing most of her doses. If she's only taking 2/7 then aim for 4 or 5/7 as goal for next 2 weeks. Then aim for 7/7 etc. I would keep up the monitoring if she is responsible for taking her own meds. And if she's not directly responsible she could certainly be responsible for saying "I didn't take my meds yet" when it's bedtime.
About Izzy. Of course every child is different and there are never any guarantees but...
My daughter has always hated to be touched when she was upset or angry. No hugging that girl, no siree. You will get physically repulsed even physically fought off if you try it. When she was little she had very violent tantrums on a regular basis. As an infant she hated to be touched when she was crying. She would literally turn into this rock hard screaming red-faced board in your arms. She also had sensory issues, spoke late and stuttered when she did start speaking around age 3. She was eventually diagnosed with significant language processing disabilities - as in the 1 to 3% scores OK? And finally with ADD only in the past year. Treating her ADD has helped her so much I regret not pushing for this sooner.
She is 17 now. Her 4th grade teacher told me not to expect her to graduate from HS. My girl has a 3.3 GPA and is on track to graduate early if she chooses from an academically strong small HS focused on using group process and offering both high school and college credit classes in digital design/animation. She has friends, she has a plan for going on to college, she is self-confident and often mistaken for someone much older than her 17 years.
So hang in there. It's early days with Izzy. There's no telling what the future will bring.
And missing one day is not a big deal. But you do need a significant level of compliance for it to be effective, I'd guess at least 85% or more (no one heard me say less than 100% OK?) and if her remission is fragile then obviously 100% is what's really needed.
Is there a chance that her "fragile" remission is really due to poor compliance? If so, maybe it's time for a heart to heart with her about that and an explanation of how the medication works to help her stay well.
The problem is that there's no immediate feedback to reward her for her efforts to be compliant. So you may have to come up with an external reward. You know your kid and whether it would have to be weekly, monthly whatever. Might just be a dish of ice cream together to celebrate a week well done.
Together you count the number of pills in the pill box at the end of each week - unless you think she might toss them I guess. I have a kid who would think of that although I don't think he'd actually do it since he knows he'd lose many things for many months...
Incremental approach is best if she's currently missing most of her doses. If she's only taking 2/7 then aim for 4 or 5/7 as goal for next 2 weeks. Then aim for 7/7 etc. I would keep up the monitoring if she is responsible for taking her own meds. And if she's not directly responsible she could certainly be responsible for saying "I didn't take my meds yet" when it's bedtime.
About Izzy. Of course every child is different and there are never any guarantees but...
My daughter has always hated to be touched when she was upset or angry. No hugging that girl, no siree. You will get physically repulsed even physically fought off if you try it. When she was little she had very violent tantrums on a regular basis. As an infant she hated to be touched when she was crying. She would literally turn into this rock hard screaming red-faced board in your arms. She also had sensory issues, spoke late and stuttered when she did start speaking around age 3. She was eventually diagnosed with significant language processing disabilities - as in the 1 to 3% scores OK? And finally with ADD only in the past year. Treating her ADD has helped her so much I regret not pushing for this sooner.
She is 17 now. Her 4th grade teacher told me not to expect her to graduate from HS. My girl has a 3.3 GPA and is on track to graduate early if she chooses from an academically strong small HS focused on using group process and offering both high school and college credit classes in digital design/animation. She has friends, she has a plan for going on to college, she is self-confident and often mistaken for someone much older than her 17 years.
So hang in there. It's early days with Izzy. There's no telling what the future will bring.
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Oops u answered while I was writing.
At my company, I can adjust my hsa contribution during the year thru payroll which I did when we went to remicade. I believe I also had an option to make a deposit to my hsa thru the administrator of the hsa. U may want to check on that to get the tax advantage on the other amount.
At my company, I can adjust my hsa contribution during the year thru payroll which I did when we went to remicade. I believe I also had an option to make a deposit to my hsa thru the administrator of the hsa. U may want to check on that to get the tax advantage on the other amount.
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Julie - The FSA rules change if you also have an HSA, and that was my problem. 
We normally use FSA and we'd become quite accustomed to it, but our high deductible plan at work changed to a high deductible with a built in HSA, which kinda screwed us up.
Patricia - We tie pills to mealtime and we probably get 87-93% compliance. ;-)
Today I forced her to drink about 3 liters of electrolyte solution over the course of an hour or two while I supervised and... HALLELUJAH, her symptoms have drastically abated. How about that? It's almost like when I tell her she's chronically dehydrated, I'm not crazy!!
Izzy's autism diagnosis is, excuse me, horses***t. She has some sort of low level brain damage from inadequately treated severe jaundice at birth, is my pet theory, but what I do know is that she's gone from a non-verbal, no-eye-contact mannequin-like little girl with very muted emotional expressions to what, as far as we can tell, is a completely and utterly normal 3 and a half year old with a mild speech impediment. I am not a neurologist or a psychiatrist, but my understanding is that kids with autism to the extent Izzy's was diagnosed over a year ago do not "recover" in the way that she has.
Despite our disbelief, she still received all the prescribed therapies (once we finally got even the autism diagnosis, because at first we were told she was absolutely normal, which was not true at all) including ABA and speech. She's in the special education preschool program in our town now, the integrated program which mixes "neurotypicals" with developmentally delayed kids, and doing quite well with just 90 minutes of speech a week and no behavioral therapy. Next year she will probably be re-enrolled as one of the role model students.
We normally use FSA and we'd become quite accustomed to it, but our high deductible plan at work changed to a high deductible with a built in HSA, which kinda screwed us up.Patricia - We tie pills to mealtime and we probably get 87-93% compliance. ;-)
Today I forced her to drink about 3 liters of electrolyte solution over the course of an hour or two while I supervised and... HALLELUJAH, her symptoms have drastically abated. How about that? It's almost like when I tell her she's chronically dehydrated, I'm not crazy!!
Izzy's autism diagnosis is, excuse me, horses***t. She has some sort of low level brain damage from inadequately treated severe jaundice at birth, is my pet theory, but what I do know is that she's gone from a non-verbal, no-eye-contact mannequin-like little girl with very muted emotional expressions to what, as far as we can tell, is a completely and utterly normal 3 and a half year old with a mild speech impediment. I am not a neurologist or a psychiatrist, but my understanding is that kids with autism to the extent Izzy's was diagnosed over a year ago do not "recover" in the way that she has.
Despite our disbelief, she still received all the prescribed therapies (once we finally got even the autism diagnosis, because at first we were told she was absolutely normal, which was not true at all) including ABA and speech. She's in the special education preschool program in our town now, the integrated program which mixes "neurotypicals" with developmentally delayed kids, and doing quite well with just 90 minutes of speech a week and no behavioral therapy. Next year she will probably be re-enrolled as one of the role model students.
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Hugs izzy or Sarah??
Crohn's Mom
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Ugh - good luck!
Hugs!
Hugs!
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Muppet
So sorry.
((((((Hugs))))))
So sorry.
((((((Hugs))))))
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Her pain is a lot better today than last night. I'm starting to wonder if we jumped the gun allowing her to be admitted. She just doesn't seem sick enough to justify a week stay to wait for procedures on Friday.
But she wasn't responding to prednisone. I dunno. I feel dumb. This is the least dramatic inpatient stay she's ever had and it feels weakly supported. Not sure what/if to do about it. Working on no sleep.
But she wasn't responding to prednisone. I dunno. I feel dumb. This is the least dramatic inpatient stay she's ever had and it feels weakly supported. Not sure what/if to do about it. Working on no sleep.
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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!
Thinking about you!
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.
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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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 :wink:. 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.
crohnsinct
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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!!!!!!!
AND STAY AWAY FROM THE GERMS!!!!!!!
Dxchg pending results of MRE is more like it.
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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.
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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.
Despite being told she had no inflammatory markers, her CRP was 0.9 at admission down to 0.39 now.
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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.
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.
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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.
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.
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.
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.
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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.
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.
Pediatric Ulcerative Colitis Activity Index, perhaps?
http://www.nature.com/ajg/journal/v106/n4/fig_tab/ajg2010481t1.html
http://www.nature.com/ajg/journal/v106/n4/fig_tab/ajg2010481f1.html#figure-title
http://www.nature.com/ajg/journal/v106/n4/fig_tab/ajg2010481t1.html
http://www.nature.com/ajg/journal/v106/n4/fig_tab/ajg2010481f1.html#figure-title
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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.
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.
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.
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.
DustyKat
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I am so sorry to hear of all you have been going through muppet...:hug:..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. :heart:
Dusty. xxx
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. :heart:
Dusty. xxx
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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.
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.
Hope you get some rest and find a certain bathroom appliance brimming with cash instead of water or any number of alternatives
:ybiggrin::ybiggrin::ybiggrin: :ybiggrin::ybiggrin::ybiggrin:
:ybiggrin::ybiggrin::ybiggrin:
:ybiggrin::ybiggrin::ybiggrin:
Crohn's Mom
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Just checking in to see how things have been going since you're home
:hug:
:hug:
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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!
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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Sarah's tapering down. Scopes are scheduled for 2/15 with an office visit, GI nurse in-service on NG tubes and EN, and a nutritionist all scheduled on 2/19.
I may push the scopes back since she'll be on prednisone a month before that date and there's a little heat at work after missing so much time, and Dr. B says it's fine to push them back. I'd prefer not to EXCEPT that we're going through a slow re-org here and I'm trying not to stand out in a bad way.
Sarah seems to be feeling much better. The methyl-prednisone seems to be doing the trick and the new magnesium supplements also seem to be helping, but it's hard to isolate the effects of one or the other, obviously.
I may push the scopes back since she'll be on prednisone a month before that date and there's a little heat at work after missing so much time, and Dr. B says it's fine to push them back. I'd prefer not to EXCEPT that we're going through a slow re-org here and I'm trying not to stand out in a bad way.
Sarah seems to be feeling much better. The methyl-prednisone seems to be doing the trick and the new magnesium supplements also seem to be helping, but it's hard to isolate the effects of one or the other, obviously.
CarolinAlaska
Holding It Together
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Wow, Muppet. Sounds like you and Sarah have had a rotten week, but glad things are starting to stabilize out. <<Hugs!>>
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I would imagen it's both. I had to put Grace on magnesium a while back and it helped. I'm glad she's feeling better. :thumleft:If you push the scopes back how far would you do it?
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I just sent a message via Facebook to a woman in Michigan who I have never met or spoken to before in my life because she happens to be the mother of a boy who has been sending Sarah harrassing and demeaning messages via the internet for several weeks, maybe months.
Ugh.
Ugh.
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She laughs it off but she also continues to talk to him because he's her "internet boyfriend"'s friend. She's not terribly good at sticking up for herself, I'm afraid. I've done a bad job in that area and I need to correct it.
I debated talking to his parents for a week or two but her recent hospitalization put it over the top for me. He's been calling her an "uggo", telling her that she deserves to be sick, deserves to die, all sorts of wonderful things. Apparently he disapproves of Sarah as "girlfriend" material for his buddy Nick. She looks like a boy with her short hair, don'cha know. All sorts of stupid crap from this 13 year old mutant.
I debated talking to his parents for a week or two but her recent hospitalization put it over the top for me. He's been calling her an "uggo", telling her that she deserves to be sick, deserves to die, all sorts of wonderful things. Apparently he disapproves of Sarah as "girlfriend" material for his buddy Nick. She looks like a boy with her short hair, don'cha know. All sorts of stupid crap from this 13 year old mutant.
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I hope so, too, because sending her links to the CT and MI statutes against Cyberharrassment and Cyberstalking seems like something I'd rather not do, nevermind calling their local PD and making it clear that the law is being broken if he doesn't stop.
crohnsinct
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That's horrible! You go papa bear!
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He's from Michigan, eh?
Well it just so happens that our QueenGothel has a pair of vice grips...if ya know what I mean.
Say the word!
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Muppett,
You should contact his Mom and the local PD that is illegal behavior and this boy needs to be taught a lesson now! If it is not nipped in the bud he will only continue to harass if not your daughter then other people. It is not right, this makes me so mad having had a child that was bullied .
You should contact his Mom and the local PD that is illegal behavior and this boy needs to be taught a lesson now! If it is not nipped in the bud he will only continue to harass if not your daughter then other people. It is not right, this makes me so mad having had a child that was bullied .
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I want to give the mom a chance to respond. So far, she has not. I've noticed that Facebook has a new filtering mechanism for inbox messages, though, and she may never see my message.
I found a phone number on a white pages site, so I guess I'll try that next, although I really, truly hate talking on the phone. I'm just no good at it.
I found a phone number on a white pages site, so I guess I'll try that next, although I really, truly hate talking on the phone. I'm just no good at it.
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The messages seem to have stopped for now so I'm ignoring the fact that his mom is ignoring me (or hasn't seen my facebook messages or friend request..)
SO, Sarah has been making about 7 trips to the bathroom a day, but swears that she is not having diarrhea or constipation. I think she may be going in there to text her boyfriend, which... ew. I've told her to quit doing that. She was swearing up and down that she wasn't texting in the bathroom but then over the weekend she took a screenshot of a conversation and posted it on Facebook FROM THE BATHROOM. Umm.. duh!
So... I think she's probably fine, and just being an obnoxious teenager. No cure for that.
The new fish we got for our big reef tank, that Izzy named Jack West, died over the weekend from a sudden infection. I think he got stressed out either by the drop in temperature outside (which caused a 1 degree drop in the tank due to draft) or because we had one very very dry night where the tank lost 3 gallons of water to evaporation, which increases the salinity a bit. Not sure. Anyway, he's dead, and Izzy didn't seem upset in the crying-her-eyes-out sense but she asked a LOT of questions like can't we just go get another Jack West at the store and I explained that we can get another Kole tang but he will not be Jack West, etc etc etc. She's still asking, which I think is what 3 year olds do.
Now two other fish in the tank are sick. I spent several hours fishing them out of the tank (they're fast and SMART) so that I could get them in a quarantine tank with medication. Hopefully I'll be able to save these ones but I have zero experience with quarantine tanks. It's very hard to maintain a saltwater fish in a 10 gallon tank without a biological/ecological cycle going in it like you would have in a large tank.
It's always something.
SO, Sarah has been making about 7 trips to the bathroom a day, but swears that she is not having diarrhea or constipation. I think she may be going in there to text her boyfriend, which... ew. I've told her to quit doing that. She was swearing up and down that she wasn't texting in the bathroom but then over the weekend she took a screenshot of a conversation and posted it on Facebook FROM THE BATHROOM. Umm.. duh!
So... I think she's probably fine, and just being an obnoxious teenager. No cure for that.
The new fish we got for our big reef tank, that Izzy named Jack West, died over the weekend from a sudden infection. I think he got stressed out either by the drop in temperature outside (which caused a 1 degree drop in the tank due to draft) or because we had one very very dry night where the tank lost 3 gallons of water to evaporation, which increases the salinity a bit. Not sure. Anyway, he's dead, and Izzy didn't seem upset in the crying-her-eyes-out sense but she asked a LOT of questions like can't we just go get another Jack West at the store and I explained that we can get another Kole tang but he will not be Jack West, etc etc etc. She's still asking, which I think is what 3 year olds do.
Now two other fish in the tank are sick. I spent several hours fishing them out of the tank (they're fast and SMART) so that I could get them in a quarantine tank with medication. Hopefully I'll be able to save these ones but I have zero experience with quarantine tanks. It's very hard to maintain a saltwater fish in a 10 gallon tank without a biological/ecological cycle going in it like you would have in a large tank.
It's always something.
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So... I think she's probably fine, and just being an obnoxious teenager. No cure for that.
Most dreadful thing I've heard all day, says the mom of a 14-year-old and one who will be 13 in two months. Going to be a long few years.....
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If she/he is already 14 and the terrible transformation has not happened... you may luck out. With Sarah, it was like a lightswitch at midnight on her 13th birthday. From sweetness and light to Satan's minion on Earth. I'm still sort of dumbstruck by it.
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Sarah was an exceptionally good kid. Amazingly good.
She's still a very moral person, mostly, but now she's a bit sneaky about certain things (eating off her diet when we're not looking, illicit conversations with friends about *gasp* sex and stuff) which sometimes can just be attributed to wanting her teenage privacy and other times is definitely a touch of defiance.
The biggest issue is the constant lack of respect in communication with me and her mom, rolled eyes, exasperated sighs, basically talking to us as if we were her teenage peers. And apparently, this is how ALL of them talk to teachers now, WTF? When I was 14 if I talked to a teacher like that I'd be suspended. They do it daily?
SO... it's more TV sitcom level agita than juvie hall, which I guess is good. Still extremely exasperating at times.
She's still a very moral person, mostly, but now she's a bit sneaky about certain things (eating off her diet when we're not looking, illicit conversations with friends about *gasp* sex and stuff) which sometimes can just be attributed to wanting her teenage privacy and other times is definitely a touch of defiance.
The biggest issue is the constant lack of respect in communication with me and her mom, rolled eyes, exasperated sighs, basically talking to us as if we were her teenage peers. And apparently, this is how ALL of them talk to teachers now, WTF? When I was 14 if I talked to a teacher like that I'd be suspended. They do it daily?
SO... it's more TV sitcom level agita than juvie hall, which I guess is good. Still extremely exasperating at times.
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My 14 year old nephew is currently grounded for telling his math teacher she doesn't know how to teach and he wasn't learning anything.
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Oh my, if I see one more eye roll, I think my eyes might pop out of MY head! I really can't complain, though. Both are really good boys and don't give me too much trouble.
The lack of disrespect at school amazes me. My kids go to a school for 7th and 8th graders. They come home with stories every day of something someone said or did to a teacher or a fight between kids. They both know if they did anything to get in trouble they wouldn't have to worry about school administrators, they'd have to worry about me and their dad!
The lack of disrespect at school amazes me. My kids go to a school for 7th and 8th graders. They come home with stories every day of something someone said or did to a teacher or a fight between kids. They both know if they did anything to get in trouble they wouldn't have to worry about school administrators, they'd have to worry about me and their dad!
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I keep telling my boys that school is just the start. They're going to have bosses and coworkers they don't like or respect, and NOW is the time to learn to how treat people with respect no matter how they feel about them!
Of course, my boys think I'm nuts most days!! (and I'll admit, some days I am!)
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Sarah stood up in her French class last year and told the teacher she was an idiot who could speak neither French nor English properly and that she was tired of being graded poorly for her poor teaching. Then she called for other classmates to also stand and support her coup.
I have to admit I giggled a little bit at the news, but she was severely reprimanded over that one.
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I am so glad Owen my eldest who is 14 this month has so far shown no interest in getting a facebook account.
At my kids school they are told if they have an issue or a complaint that they should schedule a 3 way meeting with teacher & the parent to discuss. There is then an escalation process if parent & child aren't satisfied. I think if your 14 and you have a maths teacher who doesn't know how to teach and your not learning anything, this is an issue that does need to be raised with the teacher and potentially the school. However kids do need to understand that there are appropriate ways to express their concerns and grievances.
At my kids school they are told if they have an issue or a complaint that they should schedule a 3 way meeting with teacher & the parent to discuss. There is then an escalation process if parent & child aren't satisfied. I think if your 14 and you have a maths teacher who doesn't know how to teach and your not learning anything, this is an issue that does need to be raised with the teacher and potentially the school. However kids do need to understand that there are appropriate ways to express their concerns and grievances.
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Yes Maree, I believe he was grounded for lack of respect and they are addressing math concerns because as of now his older sister is teaching him each lesson
Muppet - well at least they have no problem speaking their mind sometimes it is just how they go about, you do have to admire them somewhat though. Honestly I giggled too when I heard as I wish I would have stood up and told my 8th grade math teacher he was an idot, maybe I wouldn't be so lost when it comes to algebra these days.
Muppet - well at least they have no problem speaking their mind sometimes it is just how they go about, you do have to admire them somewhat though. Honestly I giggled too when I heard as I wish I would have stood up and told my 8th grade math teacher he was an idot, maybe I wouldn't be so lost when it comes to algebra these days.
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I'm hoping we're nearing the end of this stage with 18 (boy) and 19 (girl) year olds, however, the rolling eyes, sarcasm and entitlement are still a part of our reality! :lol: Husband was doing some renovation work on Sunday at 11am, directly beneath my daughter's bedroom, and she yells down 'OMG, this is my only day to sleep in. Pul-leeeease do that later!' Ummm, she only has classes on Mon, Tues and Thurs!!! :ymad: Husband told her 'too bad, come help me if you can't sleep'! :ytongue:
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Our scope is scheduled on Friday, I hope that Boston has done a better job clearing snow than Hartford because if I have to navigate unfamiliar, complex highways (with tolls, to boot) that are half-closed by snow drifts, I may go insane.
Sarah's brooding and angsty teenagerness has really been coming to a head lately. She's grounded from the internet after sneaking off to a site she's really not even supposed to be on in the first place while doing her homework the other night, then lying about it, and since she hasn't got a screen to act like a turnip in front of, she's taking it out on everyone in the house.
I wish I knew where my sweet girl went. All I have is this surly, entitled, nearly intolerable monster 80% of the time who only wants to stare blankly at her laptop, phone, or television and ignore and be ignored. Chores? Forget it.
Sarah's brooding and angsty teenagerness has really been coming to a head lately. She's grounded from the internet after sneaking off to a site she's really not even supposed to be on in the first place while doing her homework the other night, then lying about it, and since she hasn't got a screen to act like a turnip in front of, she's taking it out on everyone in the house.
I wish I knew where my sweet girl went. All I have is this surly, entitled, nearly intolerable monster 80% of the time who only wants to stare blankly at her laptop, phone, or television and ignore and be ignored. Chores? Forget it.
Crohn's Mom
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Hey Muppet, Gab is about to turn 20 in a couple of weeks, and "that sweet little girl" is finally rearing her head again! :ack: (hope I didn't just jinx it!)
Hang in there ~ it may get worse before it gets better, but it does indeed get better. Hormones are a B&$#h!
Hang in there ~ it may get worse before it gets better, but it does indeed get better. Hormones are a B&$#h!
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LOL@Maree.
Sarah never really had terrible twos. It seemed lucky at the time.
Then she had terrible twelves instead. It was bizarre. I'm talking out and out, dropping to the floor kicking and screaming tantrums at twelve years old. Luckily, that has mostly stopped, but the surliness is getting almost unbearable. Ugh.
Sarah never really had terrible twos. It seemed lucky at the time.
Then she had terrible twelves instead. It was bizarre. I'm talking out and out, dropping to the floor kicking and screaming tantrums at twelve years old. Luckily, that has mostly stopped, but the surliness is getting almost unbearable. Ugh.
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Sorry Maree, I have 2 boys one 13.5 and one that will be 12 in just a couple of months. Not as bad as teenage girls but I think their brains start to leak out of their head. My son who could remember every minute detail of something you told him 6 months ago, now can't remember something said 5 minutes ago. And they know everything too. Everything is "I Know!" They don't think even though they "know" everything anytime they have done something "stupid" which is more and more frequent, the inevitable question of "What were you thinking?" is answered by a blank look and "I don't know" (the only time they don't know it )
Muppet - Hope scopes go well and enjoy that 20% of the time for the next several years, I'm right there with you. They may survive teenage years but I don't know if I will. :ybiggrin:
)Muppet - Hope scopes go well and enjoy that 20% of the time for the next several years, I'm right there with you. They may survive teenage years but I don't know if I will. :ybiggrin:
