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12-10-2016, 09:01 AM   #1
CarolinAlaska
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Four years today

Today is the 4 year anniversary of the first pediatric GI visit she had before being diagnosed with Crohn's. It was the first time any doctor suggested Crohn's might be the problem. It was the first time we weren't blown off for her symptoms. She was 13, 5'1" tall and 68 lbs. She could barely walk due to weakness and pain. I am so glad for the progress we've made but can't help wondering how much better she'd be if we had started a biologic from the start.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
12-10-2016, 01:53 PM   #2
Maya142
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How is she doing now? Any better?

Sending hugs!
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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
12-10-2016, 02:29 PM   #3
CarolinAlaska
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How is she doing now? Any better?

Sending hugs!
A little better having stopped the seizure medicine, but still having pain after meals and still having ano-rectal symptoms. Weight back down to 116 (down 9 lbs now).
12-10-2016, 04:17 PM   #4
my little penguin
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Did they find another seizure drug to try ???
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12-10-2016, 04:23 PM   #5
Maya142
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Is she seeing her GI soon?
12-11-2016, 10:32 PM   #6
CarolinAlaska
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I'm waiting to hear back from both Neuro and GI. She has also been referred to new Neuro and new GI for second opinions. She is overall better without the seizure meds but still having seizures and her rectal issues not resolved.
12-11-2016, 10:39 PM   #7
pdx
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I'm glad that you are getting second opinions! Good luck--I hope that they will lead to new, more effective treatment options.
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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
12-11-2016, 10:43 PM   #8
Maya142
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Glad you're getting a second opinion. I really hope they can figure out a way to help J.

Will be thinking of her.
12-12-2016, 05:09 AM   #9
CarolinAlaska
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She just woke up at 3:30 am with the "worst abdominal pain in 4 years". Thankfully it relieved with a BM and Digestzen. She took a tizanadine for good measure and is back in bed with a heating pad.
12-13-2016, 08:43 PM   #10
CarolinAlaska
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So they called yesterday from GI and said that her Prometheus test was too high (which is making her WBC too low) and they want her to lower her 6MP to previous dose. For the rectal pain, they want her to continue the melamine enemas and find a colorectal surgeon in our area who does rectal ultrasounds (anyone have one of these done?). Jae said she had a little rectal bleeding today even without a BM when she wiped today. No mention of switching to Humira.

Secondly we have appointments to go to both new doctors (Neuro and GI) in the third week of January on the same day.

Thirdly our current neurologist's nurse called yesterday and said the doctor recommended that she try new medicine and recommended two meds. One of them was the med she just failed last year. I don't think she even looked at her chart. I'm sure I'm not going to randomly put her on another med after viciously failing 4 already.
12-13-2016, 09:21 PM   #11
my little penguin
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Why wouldnt they just do a pelvic MRI ?
That has better resolution and less invasive than a rectal ultrasound
Never had one
But assume it's similar to ones I have had
So she can't tolerate the higher dose that was needed so the answer is just lower the need
Really
And send her to a surgeon



Hope you get into the second opinion GI soon
Are they in the same hospital ???
If so don't expect a different plan ....
12-13-2016, 09:22 PM   #12
my little penguin
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http://www.colonrectal.org/services....al_Ultrasound/

Yep very invasive
Seriously they want a kid to have that done when there is an MRI
😳
12-13-2016, 09:24 PM   #13
Maya142
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A rectal ultrasound sounds awful for a child. Why can't they scope? Or do an MRI?

I think J definitely needs to see a GI for a second opinion. Are there any big children's hospitals near you? Boston Children's also does an online records review.

Cincinnati Children's also has a great IBD program.

I really don't think she will get any better if they LOWER her 6MP. It sounds like she has really failed 6MP and it's time to move on to a biologic or at the very least MTX.
12-13-2016, 09:26 PM   #14
Maya142
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That really sounds awful - especially if her rectum is inflamed, which it is. It will be painful. I would really push for a different test.
12-13-2016, 10:29 PM   #15
CarolinAlaska
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Why wouldnt they just do a pelvic MRI ?



Hope you get into the second opinion GI soon
Are they in the same hospital ???
If so don't expect a different plan ....
We did a pelvic MRI just before Thanksgiving. It showed "mild inflammation". I don't know why she isn't just scoping, except that Jae has this new hole on her anus now since our last visit and maybe is checking for fistula or abscesses? What gets me is they want us to find our own surgeon to do it. Like I know even where to start looking.

The new GI group is in Iowa City - not same group or same city. Two hours in the other direction. At least the two specialists - GI and Neuro - will be from the same place and hopefully work together.
12-13-2016, 10:34 PM   #16
Maya142
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An MRI would show a fistula or an abscess. So would a CT scan. An ultrasound probably would too but it just seems so invasive and uncomfortable for a kid, especially a teenager.

Have they actually examined her to see if it might be a fistula?

Usually a GI will have a colorectal surgeon they work closely with - usually at the same hospital. Who does she refer kids to who need abscesses drained or surgery?

Really glad she will be seeing a new GI.
12-13-2016, 10:44 PM   #17
CarolinAlaska
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No. I complain about the hole and swelling of the rectum and painful defecation and difficulty passing gas, and this is their solution. I'm really frustrated. The complaint was over the phone. These inaccessible docs!!
12-13-2016, 10:47 PM   #18
Maya142
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I am too - I want J to get a break!

Can you ask to speak to her GI directly? I've told doctors more than once when I don't think my daughter will be able to tolerate a procedure. Usually we can work something out or find an alternative.

At the very least I would want the procedure done at a children's hospital or with a colorectal surgeon who is used to working with kids.

Poor kiddo . I bet she is REALLY sick of this.
12-14-2016, 01:36 PM   #19
CarolinAlaska
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Jae got moved up to 12-20 for her new GI appointment in Iowa City! Woo hoo!
12-14-2016, 01:55 PM   #20
my little penguin
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Yippee
12-14-2016, 01:57 PM   #21
pdx
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That is such great news! Really hope that you like the doctor, and get some good treatment advice.
12-14-2016, 08:14 PM   #22
Mehita
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Your poor girl. I hope you get answers soon.
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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
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