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02-19-2015, 10:53 PM   #451
Maya142
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^ Absolutely true - she won't necessarily need to have an MRI. M's right knee was very swollen and we were actually worried about an injury (even though her dad and sister have AS...wishful thinking!).

I wish I had solutions for pain relief in the mean time but all I can think of is heat and ice. We tried some over the counter creams like Bengay that didn't help much. NSAIDs did help but most kids with IBD are not allowed to take them (M's GI has allowed her to take them since her arthritis is so bad). Your GI might be ok with Voltaren gel though, since it is less likely to hurt the stomach. It's by prescription here but I believe it is over the counter in other countries. M's GP prescribed it for her initially - you may be able to get it before seeing a rheumatologist.

M had a knee brace for a right knee but it sounds like that might her knee hurt more if she is having trouble bending it (incidentally, M couldn't fully straighten it, but bending it was fine!).
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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
02-19-2015, 11:03 PM   #452
upsetmom
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Thanks Maya and MLP....I do have some Voltaren gel at home, so we'll give that a go.
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Daughter dx CD March2012...
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Dx Premature Ovarian Failure 2014



02-20-2015, 05:28 AM   #453
DustyKat
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Where is she at with her Crohn’s upsetmom?

Large joint pain runs parallel to intestinal inflammation.

Dusty. xxx
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02-20-2015, 02:40 PM   #454
CarolinAlaska
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I vote for peds rheumatologist.
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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.
02-20-2015, 04:53 PM   #455
upsetmom
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Where is she at with her Crohn’s upsetmom?

Large joint pain runs parallel to intestinal inflammation.

Dusty. xxx
After a recent course of flagyl she has started flaring again. Never been in remission. We're looking at moving on to an adult GI soon as her GI doesn't want to change her medication.
02-20-2015, 05:28 PM   #456
DustyKat
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Poor girl. I hope you can get onto a new GI soon upsetmom.

Dusty. xxx
12-12-2015, 11:04 PM   #457
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New new mum to all this, daughter dx last year 16. On humira 40mg after a year on 20 and only a few months of feel descent. After 4 bi weekly shots it seems the 40mg may just be starting to help. Anemia, and in the ileum. Any advice? On anything I should maybe try or be helpful with. Thanks in advance.
12-13-2015, 12:21 AM   #458
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My son was facing an increase in his Remicade dose 2.5 years ago. In the weeks before the next infusion with a higher dose, he tried the specific carbohydrate diet. His symptoms improved massively, his labwork became normal, and he never needed the higher dose of Remicade. Now his doctor has given him the OK to go off the Remicade. Don't overlook the potential contribution that a dietary change can make. My son would never be where he is today without having changed his diet.
12-13-2015, 01:27 AM   #459
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I was wondering about having daughter food allergy tested. Is that something that anyone as done before starting a certain way of eating? Thanks
12-13-2015, 01:38 AM   #460
DustyKat
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@Momoftwo:

With disease in the ileum have bloods been done recently for B12, Iron Studies, Folate, Vit D, Magnesium and Zinc?
12-13-2015, 01:44 AM   #461
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Every three months blood work done, only showed low in protein this last time. Not sure what is really checked on other than iron. Still new to all this and thought maybe the allergy food test would help? She Was told to eat anything and everything per GI to gain weight, but if she does t take Miralax everyday we run into lots and lots of pain and gas, so maybe it's the food?
12-13-2015, 01:57 AM   #462
DustyKat
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It wouldn’t hurt to have allergy testing done.

Unfortunately diet is like everything else with this disease, highly individual. By all means try whatever you think may provide relief but you will find there is a lot of trial error. Also keep a food and symptoms journal so you track if there are some foods that proving more problematic than others.

When was her last scope?
12-13-2015, 10:01 AM   #463
my little penguin
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Do not do IGg testing - this is not a food allergy - some nauropaths suggest it is but your body is suppose to produce IGg to food and other things .
True food allergies cause reactions can be determine with IGE testing and skin testing by a board certified allergist. But randomly testing for food allergies is not recommended since your blood can test positive but not be allergic
Only with known history of reaction and positive Ige blood tests or skin tests are you considered allergic


Food intolerances are a different story there isn't a good test for those
Elimination diets are the only way to figure those out and introduce see a delayed reaction and then repeat to see if a delayed reaction is seen again

Ds has true food allergies to tree nuts , fish , and sesame . These he carries and epi pen for and avoids at all costs .

He has food intolerances we found by the crohns exclusive diet to chicken and beans and wheat . These cause Gi distress but will not kill him big difference .

Remicade is not recommended to be stopped EVER .
Unless it stops working
Or you have a reaction
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12-13-2015, 12:34 PM   #464
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Why oh why do I have to travel for work just a few days after DD's scopes and starting treatment. I know my DH is capable of caring for her but it's just not the same. She wants me there and I can't be. DH isn't as patient and they will argue. She doesn't need to be stressed out.
12-13-2015, 03:22 PM   #465
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so sorry @buchanaj it's so hard to not be able to be there for them at those times, my dd wants me there as well, dads great but sometimes you just want mom.
12-13-2015, 03:34 PM   #466
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“Kaplan-Meier analysis of the proportion of patients with sustained clinical benefit demonstrated that 50% relapsed within 477 days after infliximab discontinuance. In contrast, 35% of patients remained well, and without clinical relapse, up to the end of the nearly 7-year follow-up.”


This study demonstrates that up to 67% of patients with IBD in deep remission at the time of cessation of TNF-alpha blocking therapy remained in clinical remission during the 12-month follow-up. The majority of patients (85%) in clinical remission also remained in endoscopic remission.” Retreatment with anti-TNF therapy after a patient relapsed was effective in 94% of patients.
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