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Crohn's Disease Forum » Parents of Kids with IBD » Weight percentile, being a teenager, and family stress


 
04-15-2014, 05:48 PM   #31
Maya142
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Way to go D! Hope you guys get to go home soon!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-16-2014, 05:50 AM   #32
DustyKat
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So fab to hear that the NG tube is in and that your lass did so brilliantly! Well done!

Good luck for a speedy discharge!

Dusty. xxx
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04-16-2014, 06:34 AM   #33
SupportiveMom
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We tried 1 bag of feeding. Took an hr. She felt a little nauseated but was ok. Today we do the 8 bags and figure out how long it will take. The goal is to get a bag done in 30 mins. It may take a while to work up to that speed.

She had less bms last night but one I felt so bad she actually had an accident in her pants. She was way embarrassed. I think she is just so exhausted she couldn't wake up in time.

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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04-16-2014, 08:03 AM   #34
Tesscorm
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Glad it's in and I hope the nausea settles! And really hope this helps her feel better!
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Tess, mom to S, 22
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
04-16-2014, 08:22 AM   #35
Mehita
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Those unexpected BM's are tough on kids this age. So embarrassing for them. I always reminded DS that it's just the disease, it's just the disease and going is better than not going. Then we'd clean up until the next one.

I hope this all calms down soon for you guys. Kudos to her for taking on the NG tube!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-17-2014, 07:01 AM   #36
SupportiveMom
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Just an update... she has had now 4 cans of 'food' through the tube. She is managing it at 45 minutes. Today we will see of she can do 1.5 cans at 1 hr. It will reduce the times needing to be hooked up. I am waiting for home care personnel to come by to explain it all along with the nutritionist who is back in today. We were hopeful today we might go home, but that is a definite no as they scheduled an ultrasound & more blood work. Since tomorrow is a holiday I am guessing I won't to take her home until Saturday to coordinate home care stay... she is getting massive headaches but I doubt that has much to do with with the IBD.

Doc is looking for anything else she may have with the crohns. Its a needle in a haystack type of thing but something else must be going on and we just can't figure it out. I think its just a guessing game.....

04-17-2014, 11:14 AM   #37
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Big hugs
Btdt and got the t shirt on still looking at what else is going on.
Wishing you loads of luck
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DS - -Crohn's -Stelara
04-17-2014, 11:24 AM   #38
SupportiveMom
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Sometimes I think they are shooting in the dark and hope they hit something. I am tired of hearing "this doesn't make sense her symptoms are like this but her crohns is healing".. Duh I know that already. If it made sense what would I be in the hospital for?

04-17-2014, 11:36 AM   #39
my little penguin
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We had one doc basically calls it "DS's disease."-less headaches that way.
We treat for crohn's and any extra stuff he has going on at the moment until a better fit presents itself.
He has seen way to many specialists .
04-17-2014, 11:41 AM   #40
Maya142
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Would something like Elavil (amitriptyline) to help with the diarrhea and the pain? It's used for IBS and my daughter was going to start it last year when she was having a lot of diarrhea and crampy belly pain but her fecal cal was relatively low (she was on Remicade at the time), so they said the pain and diarrhea was "functional". She ended up getting better and not needing it but it seemed like a good option.
My older daughter has taken it for pain and sleep and it helped quite a bit.
04-17-2014, 11:54 AM   #41
SupportiveMom
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Elavil? I'll have to ask. Is it like questran? I know that didn't help her either, but part of it was the non compliance on her part after about a week.

04-17-2014, 11:55 AM   #42
Maya142
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No, it's a tricyclic anti-depressant which in small doses is used for IBS and a number of other things, including sleep and pain.
I'm going to tag DanceMom, I think it has helped her daughter.
04-17-2014, 01:14 PM   #43
DanceMom
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Yes, my daughter has been on Elavil for a little over a month. It requires an EKG before starting the medication. I was skeptical because she'd tried Levsin, Neurontin, and Bentyl with no benefits.

Elavil has helped some so I want her to continue it for now. Prior to starting she was having diarrhea 2-4 times a day and stomach aches nearly every morning. The diarrhea stopped almost immediately but the stomach aches took several weeks to clear. Now the diarrhea has started back up again (7-9 times daily) but she isn't having the stomach aches. If a little blue pill taken once daily can help with her stomach pain I'm all for it!
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
04-17-2014, 03:33 PM   #44
SupportiveMom
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Ok someone please calm me down stat. I was in the ultrasound with D and the technition called in the radiologist and said they were taking more pictures of the nodes in her colon. I have no idea what that means. I googled it and all that comes up is colon cancer. Please someone tell me this is not right! I'm going to be freaking until I speak to the doctor when she comes in!

04-17-2014, 03:41 PM   #45
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I know at times if there is inflammation in the colon the nodes around the area will also be swollen. I'm going to tag Dusty as she I think has explained this on another thread or posted some info about it. It also seems some other kids on this forum have had swollen nodes around bowel area due to inflammation.
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Clash
Mom to
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
04-17-2014, 05:50 PM   #46
DustyKat
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Thanks Clash.

Iím sure all will be fine with the lymph nodes SupportiveMom.

There are lymph nodes located in many areas of the body and the abdomen has more than its fair share!

It is very common when you have Crohnís, and are flaring, to have swollen lymph nodes in the area of bowel adjacent to the inflammation.

Lymph nodes are a part of the lymphatic system which plays an important part in the immune system. The nodes trap bacteria, viruses and foreign objects and then the white cells (lymphocytes) gather there and go on the attack. So as you can imagine an inflamed bowel will send the lymph nodes into overdrive. Both of my kids had swollen lymph nodes around the terminal ileum (where their disease is located) and I think you will find loads of others here have had the same pathology.

Remember, the GI tract is not sterile so once the bowel wall is breached by inflammation and ulceration it is an open portal to infection into a sterile environment.

Dusty.
04-17-2014, 05:54 PM   #47
SupportiveMom
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Ahhh thanks. That is a relief.

04-17-2014, 06:54 PM   #48
Tesscorm
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Ditto... showed up on S's MRE before as well.
04-17-2014, 07:13 PM   #49
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Sorry that you had that scare SM! Also I am surprised they did an ultrasound and not an MRE. Ultrasound really does not give the best picture of the bowel. An MRE is an MRI where you drink a special liquid contrast that helps with the visualization on the MRI. Has she ever had one?
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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.
04-17-2014, 07:14 PM   #50
Twiggy930
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I am tired of hearing "this doesn't make sense her symptoms are like this but her crohns is healing"..
Been there! Super frustrating, actually more like devastating. My son had months and months of symptoms (mostly debilitating abdominal pain) but labs (CRP, ESR and fecal calprotectin) all came back normal. We almost tried Elavil (amitriptyline). Ended up trying a probiotic and FODMAP diet. We have had good success with both. Not sure if any of this is applicable to your daughter but thought I'd throw it out there.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-17-2014, 07:46 PM   #51
SupportiveMom
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We had an MRE a month ago. The ultrasound was done only because we were here and wanted to see if there were some changes or more active areas since the month.

Looks like she caught c diff in the hospital now. We just turned in a c diff test Wednesday (last week) and results came back negative. No blood in stool until yesterday and they did a c diff test yesterday. Her stool smell changed last night I knew this was going to come. Came back positive.. stuck in quarenteen, earliest go home because of the holiday weekend and coordination of home care is now probably Tuesday! Crap...

04-17-2014, 07:52 PM   #52
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No I hate c diff. Of course the smell will haunt me forever.
Poor girl. How are her feeds going?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-17-2014, 08:13 PM   #53
SupportiveMom
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She is handling 45 minutes pretty well (1 bottle). Tomorrow I am going to get them to try the speed at 30 minutes. We are getting a night pass to go home tomorrow so I'm working out a schedule now in hopes we can spend as much time at home as possible!

04-17-2014, 08:23 PM   #54
Tesscorm
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I'm so, so sorry she/you also have to deal with c.diff. Glad you can go home tomorrow but, just sorry you have one more issue!

Is it possible the tests just didn't show the c.diff. last week and this has been contributing to her symptoms?
04-17-2014, 08:32 PM   #55
SupportiveMom
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No I don't think so. The smell & blood are new. If she had the smell I would have thought c diff first. The attending doc says someone immune compromised can show positive results 24 hrs after being exposed. He even said it is possible she could have caught it here.

04-17-2014, 08:46 PM   #56
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I'm writing to send you loads of support for all that you're going thru.
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Linda
Mom to 18 yr old daughter, M, dx'd Crohn's April 2013
TI resection surgery June 2013
Imuran
supplements=Vit D, L-Glutamine, Omega D, Probiotic, Curcumin
04-17-2014, 10:27 PM   #57
Maya142
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Oh no your poor girl! Sending hugs and thinking of you both
04-18-2014, 08:02 AM   #58
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THinking of you both and hope that you have some peace today.
04-18-2014, 09:39 AM   #59
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So sorry to hear you are stuck in the hospital and that C diff has now turned up.

04-18-2014, 02:10 PM   #60
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How is your day today? Hoping it's better.
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