Search results

This is such a good reminder. I definitely need to get on top of this before Grace leaves for college in a couple years. 🤦‍♀️ A nurse asked Grace about her g-tube placement and she replied that she's not sure, she's always had it. 🙄 Another time a nurse asked about past meds, (my almost) 14 year...

I'm sorry to hear about all the ups and downs still. 🥺 Grace tried Stelara and that might be a good fit for your kiddo. I can't believe how old the kids are getting.

🤯 I know🤦‍♀️

Thanks for the advice everyone. 😘 Grace had trailed NSAIDS 3 times. Within the second dose, she cramps. She's also tried different anti cramping meds but nothing really seems to help. We'll see how her next cycle goes. She's off of prednisone. Hopefully it will help her mood. 🙄 I hoping she...

My hubby works a local college. They're still debating.🤷‍♀️ Sounds like they're going to do a combination of things. Still waiting finally verdict. My eldest niece goes to a major university and she still waiting to hear what's happening.

Thanks my little penguin.❤ Sadly that's the case for Grace. Her doc said she calls it the 1/3 law of auto-immune disease for kids during puberty. 1/3 gets better 1/3 stays the same 1/3 gets worse 🤷‍♀️Guess what Grace fits into. Change of meds will probably be happening soon

I hope your poor boy gets better soon. It can be so complicated with multiple diagnoses. Hugs

It's been awhile for me on this forum. But......🙋‍♀️ hello. My little farmgirl is 11.5 years old. We started this journey when she was 2. She was dx at 3 with a subtype of crohn's. Since then she's added more diagnoses but she's amazing and an inspiration to many. But...... please don't...

OMW....... I can't believe this post is still going. That's fantastic!🤣 I'm trying to read up on everyone I remember. I'm older now so my memory is even worse. Hugs to the ones that are the "long timers" And hugs to the new comers.

Hey, old forum friend. I've read a bit but not all. I'm so happy to see your still a great mom. I'll be praying for directions for y'all.

So sorry to hear this. 😔 Such a rough situation to go through. Can you try to call and get his FC count? My Grace is back to being tube fed after stopping 9 lbs in 2 weeks. She's Homeschooled which is a huge blessing but yes......... Sometimes she needs movies to veg or on when it's bad. Of...

My daughter is 9 now but dx very young. She had her struggles and still does but things are normal. She thrives and will succeed no matter the obstacles. We've raised her this way and hopefully she'll remember these lessons in adulthood. You'll adjust and will overcome. Just be kind to...

Hi and welcome. My girl was 3 when diagnosed. By four she had a feeding tube placed in her nose. Her Sunday school teacher told me a child asked her about it and she said, I need it to eat. Her and the child went back to coloring. Nothing more said. It was a bigger issue for me!!! It was...

Oh man, Tess my heart just stopped my this. 😕 I'm glad y'all are home. I also had my jaw broken (on purpose) and had it wired shut like that. They were worried I'd lose weight. Proved them all wrong 😂 soft serve ice-cream slides easily between the teeth. Hopefully he heals will

Yes, just the 45 every 8 weeks but her rheumatologist said that can be changed. We meet him this week.

Update : Grace was able to go to her first week long camp. It took a prednisone burst but she got there! Next week is her Stelara shot but so far no changes. She's only just started. Then the shots will stretch out to every 8 weeks. 😒 So far not much faith that will work. GI wise her belly...

Thanks Maya Yes her joints inflamed within 2 weeks, well worse then before at least. Back to wheelchair in town mostly. PT lady is working with her but can see the decline. Stelara is for jia because her Gi said so. Which made fighting for the drug even harder. However he will up it when...

:dusty:Insurance approved Stelara:dusty: It should be here Tuesday. The insurance settled before it went to the board. Sorry I've been MIA. We had some bomb shells hit that we weren't prepared for. 1 of them being her Gi says she doesn't have IBD. :cool: We know her EDS had muddled...

Wow, has remicade been around that long? 😮 I wish Grace could still take it. 😔

Maya142 They have always worked together but I can't say for sure yes in this. 🙄 I guess I've gotten use to them being in charge and I ASSUME it's done right. Sigh😔.... it was a nice break while it lasted.