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Crohn's Disease Forum » Parents of Kids with IBD » C winter update-frustrated


 
04-11-2014, 07:22 AM   #481
Clash
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Dusty, he had CRP and SED checked 2 weeks ago. CRP was .5 range <.60 and SED was low normal. I'll have to look at LFT and CMP not sure about those!

Johnnysmom, I had no clue about zofran and heart issues. C doesn't take zofran though and his EKG was normal, just sinus tach.

I did notice the corner of C's eye was a little red last night, usually I would automatically think episcleritis which would mean CD symptoms soon to follow. But allergy season is so bad here that upon closer inspection his eyes seemed to have that allergy glaze redness. The next few days will tell the tale on that.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
04-11-2014, 10:00 AM   #482
Jane and Nick
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Hey guys, hope all are doing better. Nick has recently complained of a feeling like his throat is closing up and has occasional fits of coughing which sound forced, to the point that I say relax take it easy, breath. He says it make s him feel like there is something to clear and he can't breath. They are few and far between but a little scary, it occurred to me they may be acid reflux and explained this to Nick, but find the power of suggestion to be very powerful. Perhaps I will add a Zantac to the mix.
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04-11-2014, 10:18 AM   #483
Clash
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Hopefully, that will take care of the problem. If not you might want the doc to check he may need nexium to be px'ed.
04-15-2014, 07:19 AM   #484
Clash
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Sooooo....the heart monitor results came back normal which is the craziest thing I've heard. During that 24 hour period we took his heart rate twice with two different types of heart rate monitors each time and both times the monitors agreed with each other, both timesbhis heart rate was in the high 120s while he was propped up in bed.

His GI appt is Thursday morning, I have a list of questions and concerns a mile long. Hopefully, we will decide on a way forward from here. His weight gain is so awesome. Just from the time he ordered his tux til 2 weeks later when it came in the employee at the tux place could tell he had gained weight.

We are three days out from when his next remicade should've been and so far no symptoms have started to return. That is so odd to me, how over the course of two years on remi he went the bulk of it with no symptoms(i know lack of growth is one but I mean stomach, mouth ulcers, blah blah blah). Two "flares" and both times we thought this is it, remicade is over. So strange that the doc implies that the disease has progressed to a long segment yet a day after his last remi all CD symptoms improved. This disease is so damn confusing.

He has his first swim therapy today and a second job interview at a restaurant he applied at. He is so excited about the possibility of a job. I''ve told him that just putting himself out there is awesome and if he gets it great if not there will be other interviews. I'm a bit concerned about overloading himself but all is a part of life, I guess.
04-15-2014, 07:24 AM   #485
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Sounds like great news!

We experienced the same thing with Johnny, on 6mp for 2 years and still struggling to gain weight and high fecal cal. Then one day- his fecal cal was 47 and he started to gain weight. I don't know if the process of healing just takes a very long time or if his body decided to go into remission on its own. We hadn't done anything new, things just started working.

Keeping my fingers crossed that he gets the job!!
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Dx Oct 11 2011 Crohns disease
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04-15-2014, 07:37 AM   #486
DustyKat
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Thanks for the update Clash!

Good to hear the heart monitor results came back normal BUT I hope you can get to the bottom of the tachycardia.

It is so brilliant to hear that C is continuing to gain weight!

About the healing: I wonder if sometimes it is like the chronic wounds I deal with…

You have breakdown.
You stabilise the wound and for sometime it doesn’t get better but it doesn’t get worse.
You may or may not change treatment a number of times with no obvious response but again it doesn’t any worse.
Then for no rhyme or reason the wound suddenly goes through a phase of rapid repair.

…I guess it could be.

Dusty. xxx
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04-15-2014, 07:42 AM   #487
imaboveitall
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Great update, love to hear of weight gain.

Keep on with those feeds and he'll look great even if he feels crappy. I know people wonder how V can be so sick when she looks so healthy. Keeping his nutritional status stable will carry him through periods of disease activity with one less concern.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-15-2014, 07:53 AM   #488
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I've thought that too, Dusty. If I had to put C up to others with active disease with symptoms he hasn't had it that bad yet the disease progresses.

If I had to list my concerns, the common ones would not come into play, bms, stomach pain, mouth ulcers, inability to eat, nausea. My concerns would be:

messed up sleeping schedule(inability to fall asleep)
Episcleritis has shown up right before infusion more times than a flare of bowel issues
Lack of growth before EN
Lack of endurance energy during activities
And of course progression of area from February 2013 MRE to March 2014 CT scan
Last but not least area being deemed a stricture.

The GI keeps saying C's disease is worse than what appears in blood work and symptoms exhibit. But finding a way forward from a place where symptoms aren't constant seems to be a difficult one. Doc says if things go downhill then surgery would be next step but to me he is using(has used) appearance, symptoms and blood work as markers when he has clearly stated they aren't great markers. I think doctors find it hard to meld obvious progression of disease with what they see before them which puts C in this strange holding pattern most of the time. Just frustrated guys, sorry.
04-16-2014, 09:21 PM   #489
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Well C's GI appt is tomorrow and all is still going well. His weight looks good, tonight he probably ate 1500 calories ovee what his intake should be. Along with formula feed he had tacos for lunch and then steak, sweet potato, soup and cheese cake for dessert! This is not his usual routine at all but as we were in the city and went out to eat he really wanted to eat at a favorite restaurant.

So far this stretch no CD symptoms and since switching to MTX injections from pills he has had no back pain! Yay!

He did get the job he interviewed for I'm just hoping, hoping, hoping it doesn't over tax his system and have him backslide. He was so thrilled to get the job and is chomping at the bit to start. He told them about his CD and spondylitis and the boss was really great about it. The boss said he better not find out C was missing pt or doc appts for work. He told C he was really impressed with his maturity and the way he presented himself. He was the youngest at the interviews and the only one called back 2nd interviews and hired at this round so over 30+ kids! So fingers crossed it is something he can handle.
04-16-2014, 09:42 PM   #490
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Wishing him so much luck with his job!!!!!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
04-16-2014, 09:51 PM   #491
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Awesome and even though you're worried you must be incredibly proud
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
04-16-2014, 10:13 PM   #492
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I am really proud of him. But the best part was seeing the pride and excitement on his face when he got home to tell me...priceless. He had been saying he didn't have a chance because he was young and it was a college town so college kids would get it over him. You all should've heard some of the interview answers he gave...the boy is a salesman!
04-17-2014, 11:02 AM   #493
Tesscorm
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Wow, lots of congratulations for C!!! So great for you too... so happy and proud of your baby! We just live for these moments, eh?!!!
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Diagnosed May 2011

Treatment:
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
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-17-2014, 02:21 PM   #494
Clash
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Update- GI appt

GI appt went well. C looks good and feels good. GI was pleased with his weight. He said C case was complicatated. He thinks we are most likely dealing with scar tissue since his FC level was low and it had been a good indicator in the past.

We are going to continue with the ng tube and mtx injections. He does feel C is going to need to do surgery but feels it would be better to do on our terms and not in an emergency situation. He thinks the ng tube is providing the weight he will need for surgery. He says the MTX maybe helping too but said there was no way to really know until we fully eliminated feeds. C wasn't put on EN for a flare but to provide nutrition due to obvious malabsorption. The GI said, originally all studies dealt with EEN but now CHOP and other studies had shown almost equal to equal efficacy with 90/10% feeds.

When we first visited the nutritionist she said they would write C up as 90/10 but anything C got in food beyond 10% would be fine because weight gain was the goal. The hospital said the same, anything over what formula would be providing would just be gravy. GI at this appt said since it is obvious C is getting more than 10% food(last night supper was ribeye, baked sweet potato with brown sugar and butter, loaded potato soup and cheesecake for dessert!) that technically the EN wouldn't/shouldn't be treatment but just nutritional supplement but that as good as he was feeling maybe it was or maybe mtx was sharing the load.

So labs done and fc to be in place when needed. Keep gaining, taking MTX injections and will follow up after 4 more weeks. If symptoms arise call right away. He doesn't want to overload C with tests and appts but will be scheduling an MRE and possibly a scope. Heart rate was 77 in his office and he said looking at all the numbers and levels it was not related to any type of anemia, possibly deconditioning and improvement may be seen with PT.
04-17-2014, 03:13 PM   #495
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Glad apptmt went well. Hope the need for surgery can be avoided or, at the very least, postponed for a long time!

And, hopefully, you do see the HR issue pass with his continued PT. I know doctor told you not anemia related but just for reference (since the topic came up...), I posted a pretty decent article on Iron and the different testing on the Kids' research thread. I need to read it a second (possibly third time) to really get it straight in my head but, it was relatively 'easy' to understand.
04-17-2014, 03:26 PM   #496
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Thanks Tesscorm! I 'll read through the link. Hr went through several scenarios involving iron studies and then vitamin b and anemia of chronic disease and it seems two more he said C didn't fall near the parameters for any of them. He also discussed ferritin and how it can be a marker for inflammation and how that can skew results of something else but I don't remember all the details so that link will definitely help me get it all straight in my head.
04-17-2014, 07:07 PM   #497
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Clash,
Glad to hear the appt went so well. That is awesome news! May it only continue! Our follow up is in four weeks too so I will be hoping both our kids continue to do well!
04-18-2014, 04:15 AM   #498
DustyKat
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That is so brilliant about the job Clash! Well done C!

It is also wonderful to hear that the appointment has gone well, so happy for you and your boy.

Couldn’t agree more with the sentiment that is far better to go into surgery on your own terms. Makes for a much better outcome and recovery.



Dusty. xxx
04-18-2014, 04:52 AM   #499
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That's a great update. Hope things keep going well on the EN and Metho.
Congrats on him getting the job - a big boost for his confidence! Hope he enjoys it.
04-26-2014, 07:37 PM   #500
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Update:

Today is C's third day on the job, he is loving it so far. I can tell he is worn down but this is literally more than he has done in a year or more. We are still doing EN, well except for this morning when I told C I would refill the bag and ended up trying to pour the formula into a bag that was closed! Ughh.. instead of waking him up to disconnect so I could change the bag I just cleaned up the mess and went back to bed. So when he got up he got all but one of the cans in that he had missed before going to work.

He hasn't complained about his heart rate, I've ckecked it a couple of times and it has been normal so not sure what that was all about. We are supposed to be scheduling with an ped. EP cardiologist but C is wanting it to coincide with next GI appt so we don't have to make the two hour drive twice.

PT is going well, mainly because the C thinks the PT is hot so he volunteers for longer swimming...ha teenage boys.

I'm hoping that the rigors of the new job don't pull him down but for now he is happy and is really enjoying it so we will just have to see how it goes.

His English proxy contacted me last week and C is tied with another student for the highest average in the class. I worry that he is gonna let school slip with the new job but so far so good.

Hope everyone is doing well!

Last edited by Clash; 04-26-2014 at 09:52 PM.
04-26-2014, 09:33 PM   #501
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Wow, what a great update!!
04-27-2014, 01:08 AM   #502
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Thanks for the brilliant update Clash!

I am so happy for C that all is going well and long may it continue! Happy for you too mum. Onwards and Upwards!



Dusty. xxx
04-27-2014, 08:47 AM   #503
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Great update. Glad things are going well!
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