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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!


 
03-03-2016, 11:41 AM   #61
Mehita
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Any updates?
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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
03-03-2016, 01:53 PM   #62
kimmidwife
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I think it might be helping. She has not complained of pain yet today and is full of energy.
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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.
03-03-2016, 05:17 PM   #63
Sascot
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Great! Hope it stays that way.
03-04-2016, 05:31 PM   #64
kimmidwife
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Talk about steroid mood swings! Cailtyn was mood swinging bad this morning!
03-15-2016, 11:06 PM   #65
kimmidwife
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Caitlyn had her next entyvio yesterday. She is doing the low dose steroids every other day. She is still having a lot of pain after eating. She does her FC next week and we see the doctor the week after to figure things out. Hoping the results will be back by the appt. Her little sister has been complaint in a lot of stomach pain. Probably going to call the doc and see if we can get an FC for her as well before the upcoming appt.
03-15-2016, 11:11 PM   #66
Maya142
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Any chance the pain after eating is her gastroparesis Kim? I know my daughter had a lot of pain after eating when her gastroparesis was diagnosed. Eating smaller meals (like 300 calories at a time) helped.

Hope the doctor has some ideas for both your girls .
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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
03-16-2016, 04:10 AM   #67
my little penguin
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I was going to say the same .
GP definitely causes abdominal pain for ds.
If he doesn't take his GP meds things are much worse .
Maybe her gp meds have worn out and need fixed.
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DS - -Crohn's -Stelara
03-16-2016, 11:12 AM   #68
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Hope they can come up with something to help. Thinking of you
03-16-2016, 05:22 PM   #69
kimmidwife
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Maya and MLP,
Since she started the entyvio Her GP has greatly improved thankfully. She is now classified as very mild. So I don't think the pain is from that. She seems to be doing better today, she hasn't complained so far. Fingers crossed!
03-21-2016, 07:58 PM   #70
kimmidwife
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Tonight was poopy duty x2 for two daughters 2 fecal calp. 2 Cdiff, 2 stool cultures. I am pooped! Lol!
But really where is the wine when you need some?
03-21-2016, 09:53 PM   #71
Tesscorm
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But really where is the wine when you need some?
I think CIC is hoarding it!! But, seriously... Poor you!! The true definition of being 'pooped out'!
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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
03-23-2016, 05:22 PM   #72
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How lovely! That must have been fun
03-26-2016, 08:37 PM   #73
kimmidwife
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My girl is having terrible pain again. 😥
We see the doctor on Monday.
03-26-2016, 10:11 PM   #74
Maya142
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Any progress on the pain rehab program Kim? Really sorry to hear Caitlyn is in a lot of pain again .
03-27-2016, 03:27 PM   #75
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Really sorry! Hugs
03-27-2016, 07:01 PM   #76
Farmwife
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We're in the pain program as I type this.
Worth it if you can get her to one.

I hope she feels better soon.
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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
03-27-2016, 09:19 PM   #77
kimmidwife
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Maya,
I need to work on it. The issue is the timing we have a lot going on and Caitlyn doesn't want to take the time away to go right now. She is finishing up her senior year and then is supposed to work this summer for the first time. We are talking about her going after the summer depending on how she is doing.
03-28-2016, 06:49 PM   #78
kimmidwife
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Latest update,
Just finished with all 3 of my girls at the GI doctor. He spent almost 2 hours with us in the room.
My youngest is doing really well on the Apriso thankfully. She actually grew 2 inches and gained 6 lbs since her last visit.
My middle daughter he is pretty sure does not have IBD but does have this other diagnosis, congenital sucrose intestinal deficiency. We reviewed all her labs and biopsies again and he is pretty certain of this diagnosis.
Finally daughter number 3, my oldest daughter she continues to have severe pain especially after eating. (She is currently on entyvio, a low dose of prednisone every other day, and budesonide.) He is baffled by her. She has tried everything under the sun for this pain nothing helps. On her last colonoscopy (beginning of October) it showed that the area where she had her surgery 5 years ago there is still active disease. He wants to do another colonoscopy again in 2 weeks and then possibly surgery. 😓
03-28-2016, 09:06 PM   #79
kimmidwife
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Forgot to say we are still waiting for both girls fecal calprotectin results. They were still pending today.
03-28-2016, 10:21 PM   #80
Mehita
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How are you doing, momma? That's a lot of stuff going on. Are you taking breaks, taking care of you?
03-28-2016, 10:24 PM   #81
kimmidwife
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Mehita,
I am trying. It is so hard.
03-30-2016, 12:54 PM   #82
pdx
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So sorry that you have so much on your plate right now, Kim. Hope that Caitlyn's doctor can figure out a way to treat her without surgery.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
04-10-2016, 08:32 AM   #83
kimmidwife
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Time to start the colonoscopy prep. 😜
04-10-2016, 08:51 AM   #84
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Forgot to update,
Caitlyn's fecal calp is unchanged 572. She had a bone density done it showed borderline osteoporosis so her doctor wants her to see a nephrologist.
Caitlyn's little sister fecal calp came back 37 yay!!!!
04-10-2016, 09:50 AM   #85
my little penguin
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Kimmidwife
Why a kidney doc for her osteoporosis ??
Ds sees one but that is for his actual kidneys .

Good luck with the prep
Glad her sisters FC is down
04-10-2016, 11:33 AM   #86
kimmidwife
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MLP,
I read that kidney docs are who you see when your body is not absorbing calcium. I was confused by it as well. I only spoke with the medical assistant about the results but when I see him tomorrow at the colonoscopy I will ask about it.
04-10-2016, 11:54 AM   #87
pdx
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Hope the prep and scopes go well. And great to hear that her sister's FC is down.
04-10-2016, 11:58 AM   #88
Sascot
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Good luck with the prep! Good news on the FC of 37.
04-10-2016, 12:20 PM   #89
Maya142
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My daughter has low bone density (osteopenia though not osteoporosis) and we were referred to a nutritionist. Interesting on the kidney doctor -- had never heard that before.

However, in her case, it seems like the osteopenia is a result of poor nutrition and inflammation in her joints.

We will redo her Dexa scan in May and see if her bone density has changed now that she has gained weight and is on formula and is more active (somewhat anyway).

Very glad Caitlyn's sister's FC is down. Good luck with scopes!
04-11-2016, 07:16 PM   #90
kimmidwife
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Today was a rough day. I am exhausted. The scopes went well but we found out Caitlyn has a severe stricture at the anastomoses where her previous surgery was. It is very inflamed and he could not get the scope through. He said the area was very friable and he wants her to see the surgeon ASAP to get this area resected. Because he couldn't really see very far with the scope after her scopes she went for a GI Barium series. We spent most of the day St the hospital. We have an appt with the surgeon for Wednesday and are hoping to do the surgery next week.
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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!
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