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Hi and welcome Sadly this is how it happened for my girl. Grace was only 3 at the time. She however had lots of symptoms but all tests came back negative until she showed positive for cdiff. We thought that was the culprit but the problems came back. She got scoped and it showed ibd.

😢 Grace reacted to Remicade again. They gave her a bunch of steroids, Benadryl and such. Tried again and same symptoms came back. The Rheumatologist told us he'd pull it next time it happened but we'll get the new game plan tomorrow. She only got a quarter of her Remicade, So hopefully...

OMW....... I feel for ya, CIC. We had an Evangelist mentioned a few years from now my son would be able to travel and help him during the summers. I thought that was great until I pictured 🤔the offer made to Grace😲. Don't think this mama could handle that right now. Lol (of course if she could...

How is she? Poor girl.

Hi and welcome I wanted to come in and say that we have the secondary state insurance. It had been a huge life saver for us. My husband has a good insurance thru his work but we still owe a lot. The secondary insurance picks up most everything else. In Michigan is called Michigan Special...

Grace is the younger sibling. Yes, major antibiotic use when younger. 😠 My older child also had antibiotics and lots of ear infections another infection. But no Crohn's..... Yet🙄

Just heard from the doc (only took 7 days). 🙄 He upped her Benadryl before infusion and something else given with the remicade that starts with "s". No it didn't sound like saline solution. Unless it goes by a different name when it's hanging in the bag. For the life of me I don't know what...

Yes, second opinion. It's quiet shocking that he'd overlook such details. Celiac can do damage if not treated, not just ibd. Hopefully this new gi will help.

My Grace was 3 at dx, so way younger than yours. Her GI didn't even mention EEN. Thanks to this forum I brought it up. He said most can't comply with EEN and steroids are easier. Since this time it seems like they are really pushing it. Which is great to have another option. Now Grace was put...

Still waiting to hear back from the rheumatologist. Everything settled but if course she's tired. Mlp, her sternum was the only issue. No breathing issues or other systems. Tess, it could be coincidental but to never have that issue makes it a huge coincidence. Maya, remicade every two weeks...

Last night her whole body was hit with an arthritis flare (knees, ankles, back, hips, sternum) Her reaction at remicade was chest pain that still present today. It's her sternum area. I'm wondering if the reaction was a systemic reaction that set off her jia because of remicade ? Does that...

During the infusion. She's already pretreated but might have to up it now. They said to give more Benadryl before bed. If it comes back we're to go to the er.

Can just chest pains be a reaction to Remicade? No breathing issues or anything else.

Very good points. I just want to second or third 😊 what the others have said. I'm a big believer in chiropractic care for myself but they won't touch my daughter because of her jia.

Nope, not a single vaccine until she was 5ish. Dx with ibd at 3 and dx with jia at 4. So vaccines not the cause for us.

Lol, we've bought every soft brace from the pharmacy and online. Her rheumatologist also HATES ridged braces or bracing in general for the same reasons as you said. But EDS changes everything. :frown: She had afo's and others I can't recall the names of right now,. Her custom made ankle...

Maya, grace had multiple custom braces but we try to limit bracing because of her jia. Mlp, for now it works and her strength and muscle tone are continually monitor. If she needs more she'll get it. Thanks to you both for the info.

Yes😊 Sorry haven't updated much in the past year. Grace goes to pt once a week. Monthly pt evaluations. She also has a ridged pt schedule at home 4 days a week. Her rheumatologist and pain doc oversee everything to do with Grace's care. Grace is not wheelchair bound but has to use it when...

Yes, she stil has the tube. I'll look thru the no food to see if there is a culprit. But I'm also thinking her AMPS is a big factor. Her eds is worsening (she uses a wheelchair now)... which flares her pain.........which flares her jia.....which flares her gi tract. Grace is nothing if not an...

No Maya, she did it without sedation. Insurance will only cover every three months. I've never heard of the headache diet but it makes sense. I do know she has hotdogs and lunch meat. :yfaint: I wonder if boost could be a culprit.:yrolleyes: I hate this! We went thru all this 5 years ago...