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Crohn's Disease Forum » Parents of Kids with IBD » Where we are now and how freaked I am


 
02-01-2017, 05:39 AM   #61
ebarker2
 
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Wow. I really don't know how to say how much I feel for you. One avenue is to have your kids tested properly for Celiac, which could be involved. Dr Alessio Fassano at Massachusetts General Hospital is a world wide expert, and has helped thousands of children and accepts patients.

http://www.massgeneral.org/doctors/doctor.aspx?id=19184
02-01-2017, 06:56 AM   #62
CarolinAlaska
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This sounds so much like what we are going through. The new doctor we are seeing suggested EDS as a possible diagnosis for Caitlyn due to her unremitting stomach pain.
Did they do biopsies?
Yes, they did. Only one was abnormal and she said a certain percentage of normal people had that finding in tht location. Unfortunately neither the scopes nor the pill cam visualized the terminal ileum where the pain mostly localizes.
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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.
02-01-2017, 07:09 AM   #63
CarolinAlaska
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Remind me, what are J's symptoms? Has she ever been tested for Gastroparesis? M also had pain that got much worse with eating and so she lost a lot of weight...

If it's EDS, is there anything they can do for the pain? Have you considered seeing pain management? Many children's hospitals now have pediatric pain management clinics.
She has constant right lower quadrant pain that worsens with cramping, etc when she eats. She has had diarrhea most of her life but seems to have one or two soft stools now. It is rare to have nausea. Lately she has been very fatigued, running low BPs with tachycardia. She lost about 10-15 lbs in past several months and weighs 113-116, @ 5'9 3/4" tall. She is seeing a psychologist who specializes in kids with chronic health issues and pain. We've never seen a geneticist, but rheumy diagnosed her with hypermobility syndrome a year ago and last summer was diagnosed with postural tachycardia. When she was checked into neurologist last week her BP was 70/40. We are under care of cardiologist for that.
02-01-2017, 07:19 AM   #64
CarolinAlaska
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I can say Ds had severe belly pain similar to Jae for two spring /summers
For him it was food intolerance (chicken beef lots of veggies milk and gluten plus more
AND gastroparesis)
It took about a year of first going formula only then slowly adding one food at a time
Eliminating most process foods ,emulsifiers additives etc...
And sticking to Whole Foods but again we trial one food at a time
Avoiding skins ,beans ,high fiber

He know has a decent diet ,gastroparesis meds and lots of exercise which helped a lot

Second the look at gastroparesis very common with eds
And amplified pain clinic (we did not like regular pain management)
Have they filled out abdominal migraines ?

Good luck
To be honest, all they ever do with GI is scopes. They only ever look at her through IBD glasses. I have had her tested for allergies. She has a very limited diet that she'll eat due to pain, which mostly consists of GF mac and cheese, rice and potatoes. She eat a few well cooked veggies like carrots in a stew and eats most meats.

No mention of abdominal migraines or gastroparesis.
02-01-2017, 09:35 PM   #65
kimmidwife
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It upsets me that they didn't see her terminal ileum that is my daughters biggest trouble spot.
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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.
02-01-2017, 09:44 PM   #66
Maya142
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I wish they had been able to see her TI too - especially since her pain is localized there.

A pain management specialist might be worth seeing if the pain is what is impacting her quality of life most. There are medications used for chronic pain (I don't mean opioids) that may help. My daughter has tried several of them.
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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
02-02-2017, 10:18 AM   #67
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I was in a really bad flare this summer with rectal/anal pain and mesalamine enemas, while a pretty uncomfortable process, did help me for a little while and you kind of get used to doing them.

I was living in Oregon temporarily at the time and they have legal recreational cannabis there. I was curious about it as well so I did try a few products out to see if I would want to get a medical card when I got back home, especially CBD products. CBD is the part of cannabis that is therapeutic and non-psychoactive. So while THC is what gets you high, CBD is more of a physical effect. I ended up liking edibles that were high in CBD with a small amount of THC the most. They made me feel happier, hungrier, and made some of the pain go away. To be clear though, I was using this as a method of symptom relief, in addition to my regular treatment and medication from a GI doctor. I have talked to my GI doctor about this as well, and they agree/feel that the research doesn't support cannabis as a treatment for the underlying issues of Crohn's (as in curing it, etc.) but that it can be helpful for symptoms and that is really what I wanted as I was suffering a lot while waiting for other treatments to hopefully help me.

If you are still considering cannabis I think it's worth it to look into, especially CBD rather than THC. They make tons of different products now, like tinctures, CBD oil, edibles, where you don't have to smoke or inhale anything and you don't have to get high from it either. It sounds like a lot of the problems your daughter is having are ones that I have struggled with myself, I wish her the best.
02-02-2017, 05:53 PM   #68
Mehita
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Sorry, but what is EDS?
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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
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- Small bowel resection, Jan 2013
02-03-2017, 05:24 AM   #69
CarolinAlaska
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Sorry, but what is EDS?
Ehlers-Danlos Syndrome
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