Good news! We won't be flying blind!! Our doc found a peds protocol for Stelara. She was so relieved to find data that relates to our needs!

Wonderful!!!! Ok, fingers are crossed for this one. SOMETHING has to work for Gus!

So, today at about 4:00 while I was teaching a flute lesson, my son texts me, "Promise you won't get mad---I rolled my ankle again." Just got home from Urgent Care. Sigh.......same ankle, same broken spot, same thing! He's on crutches again,, and will probably get the cast again next week. I really want to burn his skateboard!!! On the flip side...he is so optimistic that he thinks of the bright side of things...as I write, he is practicing the piano (he quit lessons 5 years ago), and wants to play classical music again--it's in his genes. Maybe he will have the Mozart sonata down when he gets his cast off.
The reality of it, he will probably get even better at his video games, too!!!!

Let us know when Gus gets his first treatment. Hope it works :)

Thanks Kate. I love that your son just keeps on "truckin"." Are my '7's showing???
LOL
Cheryl

Gus has his first Stelara injection today. Week -0- Then next one will be in four weeks. I hope this works. He came unglued when the nurse gave him the injection. He said it made his whole leg burn. I guess that means it has an acidic base. Sigh. When will Crohn's get easier for my sweet boy???

Soon, I hope!!!! I wonder how many other children have it as bad as Gus.... he (and you) must be such a fighter, and it takes A LOT of integrity to get through this without falling to pieces. I don't know...at least the Stelera shot is only once every 4 weeks, since it hurts so much. I WISH someone will find a cure, but at least they keep coming up with new treatments---something will help Gus. I think we all hate this disease.

I had lunch with a close friend yesterday, and she said that her 13 year old daughter has super swollen ankles, her eye-sight is going to pieces, and she is anemic. She has been sent to a rhumatologist, but I remembered that she had stayed home from school a lot this year with a hurting stomach. I told her to look into other auto-immune diseases (including crohns) because many of these (I guess there are 80) have similar symptoms---joint pain, inflammation of eyes and so on and so on.... hmmm...something in the water!

I asked my doc about the difference between injection and infusion. He said it is usually better to administer acidic medications by infusion because they tend to work better when they go straight into the bloodstream...and then it doesn't hurt either. Stelara was developed for Psoriasis and it was determined to work best as an injection for that treatment. Stelara is in stage three trials for Crohn's. I need to spend this week trying to find out if there is any information on infusion vs injection of Stelara for Crohn's.

kate62, I'm so sorry your friend's daughter is having such a tough time. As we both know, getting to the bottom of that situation is going to take time. None of these diseases are easy to pinpoint. I'm glad your friend has you to lean on during this stressful time!

Cheryl

Hope the Stelara works! I haven't read anything about it yet, but should.

Will has Remicade tomorrow after school. We go straight to the hospital---he brings his homework and does his thing. He made it to week 11 (the doc prefers 12), but the dragon was stirring, so in he goes! Besides, he takes the SAT this saturday, and he really doesn't want cramps while taking the test, so it's good timing.

I cooked up a breakfast casserole for him after school, and he LOVED it. Eggs are the best :) It was just a mix of eggs, turkey bacon, lactose free milk, sourdough bread, and cheese. Yum.

I

Kate,

Casserole sounds good. Gus loves eggs too. I'm so happy the Remicade is working for Will. I hope he does well on the SAT. One less stress to fuel the dragon!

Time flies! Gus has had his second Stelara injection. He said it was a little better in the arm than it was in the leg...didn't hurt quite as much.

Also had another MRE due to continuing pain. The good news is that the massive amount of inflammation from January is much better. The bad news is that the stricture at the terminal ileum is still there and a new stricture is forming (probably couldn't see it in January due to the inflammation).

Expecting surgery 3rd week of April. Hoping that the combination of surgery and the new med will result in a remission. It would be so great if he could have a pain and hospital free 8th grade year (next year)!

Hi Cheryl, Thanks for letting us know about Gus, with all the good and the bad. That's fantastic that his inflammation is down. I wish I knew why strictures occur! Will doesn't have that (I think), so we never talk about it with his GI visits.

I read a little about Stelera, and it sounds like another biologic drug---like remicade and humera??? As long as it works, IT WORKS! We saw the GI last week, and as I wish that the picture would be rosy, it seems to come around to waiting long enough for more drugs to work at this point. We all see the commercials, so I know there is a lot of research being done these days... I'm glad our kids didn't have this 30 years ago!

How are you holding up? Are your other kids ok? And hubby?

Let's see.....my daughter is getting initiated into her new sorority at UH next month. I have a $300 bill due for the sorority this month. My daughter hinted last night (I didn't bite) that she has to buy a new uniform for work and buy a formal dress for a sorority function. Thank god she has a job! I told her last night to pick up her first paycheck and open a bank account so she has MONEY!!!

Life has its twists and turns!

Kate,

I'm glad that Will doesn't have stricturing disease. It's awful! LOL, not that any of it is "good." Yes, Stelara is another biologic.

Sounds like your daughter is enjoying university life. Stand firm mom! You are on the right track!!

Cheryl

I don't know if it is the Stelara or not, but we just returned from four days of skiing and Gus did really well! I can't begin to recall any period when he was able to exert so much energy for so many days in a row. Let's face it...snow skiing is equal parts fun and exercise!

He ate what he wanted and did feel a little "icky" a few time, but nothing serious. He didn't have any gut pain either!

Oh, how I hope this is the beginning of something wonderful!

Good news! My fingers are crossed for you and Gus!! Nice to have a skiing cay in. We always go up to Snow Valley, but since will keeps breaking his ankle, this year is a pass :( He gets his cast off next week, and I hope to just burn is skateboard!!!

I hope you and your family have a wonderful Easter :) Im driving up to Stockton by my self to visiit my step-mom---she's not doing well. My daughter texted us pictures of her spring break on the North Shore in Oahu today. She swam with turtles....
Lucky girl!

Thanks Kate. Wouldn't it be fun if Will and Gus could go skiing together one day??? Our kids just learned how to ski this season...and they LOVE it.

You know if you burn the board, he will just get a new one...LOL. Maybe he could turn it into a wall shelf? How are things with his young lady?

Swimming with turtles, wow. I hope she has an underwater camera!

Best wishes for the situation with your step-mom. I hope it doesn't end-up complicating your life further.

Happy Easter to you and your family!

Hi Chery,

I just got back early this evening from Stockton---I 5 is a long drive down. All is fine---hubbie and son survived while I was gone, partly because I left a lot of food. Will showed me his newly cast-shorn ankle. He can hop on it and he and his dad ordered a new "cruising" skateboard yesterday for his birthday. He insists that he can't do tricks on it because it is too long for that (I can only hope). There is no stopping it! Before I left, my daughter called in a crisis because her bathing suit top broke and needed to buy a new one---can I please help? Ok... i must say that my daughter has double DD's (size one pants) and the ONLY bathing suit tops that work are the REALLY expensive ones!! I get that being in Hawaii means wearing a bathing suit top is more than an occasional thing, so I said I would pay half! It's all good....

Hope you and the other moms had a great Easter! Glad Gus is feeling better :)