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


 
02-04-2013, 10:01 AM   #301
Jmrogers4
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I agree with you Tink both my boys know they would be in way more trouble at home then at school. You treat your teachers and administrators pretty much everyone with respect whether you like them or not
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Mom to Jack (18) dx Crohn's 2/2010
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Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-04-2013, 10:10 AM   #302
Tink572
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I agree with you Tink both my boys know they would be in way more trouble at home then at school. You treat your teachers and administrators pretty much everyone with respect whether you like them or not
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!)
02-04-2013, 10:33 AM   #303
muppet
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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.
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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02-04-2013, 11:02 AM   #304
Maree.
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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.
02-04-2013, 12:00 PM   #305
Jmrogers4
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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.
02-04-2013, 12:00 PM   #306
Tesscorm
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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! 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!!! Husband told her 'too bad, come help me if you can't sleep'!
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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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02-11-2013, 09:40 AM   #307
muppet
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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.
02-11-2013, 10:13 AM   #308
Tesscorm
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Remember the 'terrible twos' and all the 'no', 'no', 'no's and the sweet girl who emerged??.... This too shall pass
02-11-2013, 10:18 AM   #309
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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! (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!
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02-11-2013, 10:27 AM   #310
Maree.
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Please tell me that having only sons means I'm safe and I won't have to endure the surely, entitled, monster stage. Please ... (Willing to accept half truths and out and out lies here)
02-11-2013, 10:41 AM   #311
muppet
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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.
02-11-2013, 11:30 AM   #312
Jmrogers4
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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.
02-11-2013, 11:37 AM   #313
Maree.
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My eldest one is 14 in 13 days, he's 6 ft 3 now and is my solid dependable one. there doesn't seem to be a lot of little boy left there anymore, but I'm yet to see the difficult teen. I keep hoping he just skipped over that bit.
02-11-2013, 01:06 PM   #314
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"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"

Ha! Sounds like my 4 YO son right now! rounding the corner towards 5 though, and starting to see some changes for the better...I heard 5 is a good age!
02-11-2013, 01:08 PM   #315
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5 is wonderful Still adorable but just that little bit more independant.
02-11-2013, 01:22 PM   #316
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5 was "I want to do everything my older sisters are doing" and "brush my teeth, pick out my clothes, tuck me in" and essentially still treat me like a baby...
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02-13-2013, 09:09 AM   #317
crohnsinct
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Scopes Friday?! When are you doing prep? Where are you doing prep? At home? Yikes! The thought of driving O 1 1/2 hours away the morning of a scope makes me nervous I could only imagine driving all the way to Boston. Take a road with lots of rest stops.

Good Luck!
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
02-13-2013, 09:13 AM   #318
Tesscorm
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Good luck with the prep and scopes!!!
02-13-2013, 09:19 AM   #319
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There are lots of places to stop on the turnpike and before. It's the most mild prep I've ever seen. I wish prep had been this easy when I was 6...

I wouldn't even dream of letting CCMC do this scope. I'll take the drive.

We have to get a CBC today to check her platelet levels. She's on the methylprednisone, so they should be fine.
02-13-2013, 10:37 AM   #320
Jmrogers4
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Good luck with scopes hope CBC comes back with good results
02-13-2013, 10:00 PM   #321
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Good luck !!!!
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02-15-2013, 07:32 PM   #322
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Scopes totally clean except for slight inflammation in rectum. I think 3.5 weeks of methylprednisolone may have had a bit to do with that, but Dr. B feels that it's probably not a dramatic difference. I do recall scopes previously showing activity in the entire colon, but that's not the case right now.

So.. that's good... except we don't really have a picture of where she was at when admitted (even though Dr. B seems to think it's close.)

He talked about treating her with enemas and I reminded him that she's ASA intolerant so it'd have to be steroid enemas. Will talk on Tuesday. I'd like to get her off of 6MP because she's getting a cold every 3-5 weeks and Izzy catches every single one. 15 colds for both of them (Izzy suffers far more than Sarah each time) in the past 13 months.
02-16-2013, 06:05 AM   #323
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Yeah, it's the answer you hope for but really no answer at all! Hope you and Dr. B get her figured out Muppet!
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02-16-2013, 09:14 AM   #324
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That's good that the scopes were clean for the most part. Good luck with the appointment on Monday!
02-20-2013, 07:46 AM   #325
muppet
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Well, yesterday's appointments went awfully, except that Sarah is doing very well. Some incredible lack of professionalism, some poor treatment from Dr. B when I asked about whether 6MP could be responsible for Sarah getting a cold every 3 weeks all year long regardless of season. Our in-service with the GI nurse was cancelled, apparently, but nobody told us OR the front office staff, in fact they consented us for it when we arrived, so we waited in the waiting room for an hour for absolutely no reason and then we went home because I was too angry to sit and wait for the nutritionist whose visit was moot without the NG tube in-service anyway.

I would tend to agree that given Sarah's fantastic scope and general good health on methyl-prednisolone, and the reinforcement of her UC diagnosis, the issue of EN is pretty much moot right now, but since we haven't gotten the biopsies back yet I wasn't going to cancel, there's no harm in being prepared if they find a granuloma or something, I figured.

Well apparently the nurse and/or Dr. B decided the in-service on NG tube feeding was no longer necessary without bothering to tell anyone else. Either that or they decided that day that we didn't need it and went with "Oh, we cancelled that, didn't we tell you?"

Pretty aggravated. Like I said, they consented us for the in-service and nutritionist. Consent to bill, I mean. We had 3 papers to sign for each of the 3 appointments.

Add to that Dr. B's continued habit of not letting me ever get to the period in any of my sentences, and a shade of condescension and incredulity that I'd even consider taking her off the 6MP (I wasn't, I was asking if it could be responsible for her colds) when she's doing so well. Then telling me (not in so many words) that I'm *crazy* for wanting to discontinue one of Sarah's medications to keep the *baby* from getting sick... ugh. I was not happy. I wasn't being vague. I was quite clear, but Dr. B likes his shorthand, doesn't let you finish a sentence because he knows where you're going with it. Well he was anticipating me badly yesterday.

I'm super pissed today, which is making me feel ill. Ugh.
02-20-2013, 12:58 PM   #326
muppet
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So of course the upshot is that Sarah is doing very well. Still on a reasonably high dose of pred, though, at 16mg of methyl-prednisolone.
02-20-2013, 01:03 PM   #327
Maree.
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Glad to hear she is doing well. Sorry that your doctor has such shocking manners.
02-20-2013, 01:22 PM   #328
crohnsinct
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That is ridiculous...it's not like you live around the corner and came by on your lunch hour! UGH! I mean I get mistakes happen but then they should apologize up one side and down the other.

I can take pretty much anything but a doc not listening to me just about takes the cake in my book!

Sorry you are having a time of it but glad Sarah is doing well.
02-20-2013, 01:45 PM   #329
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Yikes, that was very annoying for you. Don't blame you for being angry! Thank goodness Sarah is feeling ok otherwise it would have been twice as bad
02-20-2013, 03:45 PM   #330
CarolinAlaska
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I'm sorry it went so terribly. I know how it is when someone thinks you are saying or meaning something that you aren't... I'm always afraid of suggesting or asking about something for the reason that they might think I am pushing for that thing instead of just wanting to discuss the options... I hope you are feeling more at peace now. <<<Hugs>>>
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