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I'm so sorry she's still going thru hardship. :ghug: And because I can't let a comment like that go by....... Ya, :shifty: her father:yfrown:

Hey another remicade fan here. My girl was dx at 3 but it's almost 9 now (how does that happen, lol.) She's been on Remicade and multiple other meds. She's also been on EEN/EN for over 5 years. As said above your child might need an easier to digest formula.

Hi and a late welcome. My Grace was dx at 3 but it's almost 9 now. I had to push just to get answers for Grace. Like you I wouldn't accept "just the norm" for my girl. Grace also had addreanal issues but hers settled rather quickly but still took a year to wean off of pred. And another...

Little Farmgirl will be going to see a neurologist for the first time for daily headaches. It's going on 6 months and a few medicines but still no relief. What should I expect from the visit? Is there anything I could do ahead of time to prepare? Thanks:dusty:

Are her headaches any better? Grace's are still bad.

Has her fcal been higher in the past? MRI sounds like a good plan. Way to go H! But I'm willing to bet she bet her she'd gets her toughness from her mama!

Hugs, hugs and more hugs! Even if it was suspected...... Your never ready! Not much I can say but offer an ear if you need one.

We've never been to Motts but my sister with her two kids have. It is a highly rated hospital. Cincinnati is one of the best pediatric ibd centers in the country. If you want a second opinion that's a good one. I think Boston is also. Maya142 I think knows a few more.

I go to Devos in Grand Rapids. We love it there. But like you we heard a lot of excuses on why it can't be this or that. C.s. Motts is a good hospital. We've also been to Mayo Clinic. My Grace never showed anything in her blood. Labs mostly normal, no diarrhea but constipation instead...

Welcome but sorry you had to search us out. We're up here in northern Michigan. My dd was dx at 3. It took about a year to get answers to what was happening. I second what mlp said above. You'll get lots of advice from family and friends on what to do. Remember there is no cure for ibd...

Merry Christmas and Happy New Year, 2017! The little farmgirl loved her gifts and demanded to take her baby to show her grandma! She named the baby after same grandma while getting another mountain of gifts.:ylol: :sign0085: It looks like Christmas grave yard in my house. 3 garbage bags full...

Welcome I would also do the scopes. My Grace never has loose stool. They scoped her and told me all look fine but the biopsy shower a very different story. Once started on the right meds and her ibd went near remission within 4 months. For us is about Grace's quality of life. She had near...

I should have clarified, the fever was just for the infusion. No other symptoms of illness before or after. Just during the infusion.

She take Benadryl and Tylenol every single infusion. They also do the same monitoring for her. Usually it's twice, once at the beginning and once about a half an hour before the infusion is done.

Thanks Jacquie That's what made me laugh because when I was a kid there were cabbage patch kids. All the rage back then. Now they have dolls that tell you they need to be changed or fed. Ummmmmm, no! Like I need to hear more voices asking for food.:ylol: However, I go back to Toys-R-Us to get...

Always something. Hugs

I think because they were waiting for a spot to open up for her in the pain rehab, CIC. Hopefully the doc can get her in sooner, Kim. Grace's stay made a world of difference.

This was the reason for the every 2 weeks of Remicade for Grace. This is what the rheumatologist believes. I was sceptical at first if the ever two weeks would work but Grace seems to be improving slowly.

Narco but I'm happy to say it's only once a week if that. So that's great! Tramadol did nothing for her. She's also on migraine meds. In actuality this is the least amount of meds she's been on in years.

Well before you came on board (pre-Maya days) on the forum. Grace has the same issue from steroid use. If I remember correctly hers was mild and she had to have stress doses of pred as needed. That's good to have the list. As for the vEDS, the doc agree with me...for now. I don't believe we...