Birthday Boy Update

[Mehita]

My house has been invaded by teenage boys to celebrate DS's 15th birthday. It's pretty exciting stuff considering how many parties we've had to cancel in the past when he'd been sick! They're loud and stinky and I'm sure no one is going to sleep tonight, but I'm still a happy momma. Counting the blessings!

DS has been doing really, really well since starting Remicade in November 2013. Crohn's? What Crohn's? It's the Celiac that's been a pain in the butt lately. As he starts hanging out away from home more, he's having a hard time finding gluten free foods. Frustrates him because he's so picky, but it's good for him too, KWIM?

I won't say height and weight have plateaued per se, but definately slowed in recent months. Tennis season just started and he's burning through the calories. His dietician said he should be taking in at least 3000 a day. Does that sound right? She also suggested using glutamine to help absorb better. Has anyone tried this? Overall, he's sitting at 105 lbs and 5'3".

Next Remicade appt is at the end of April. He seems to be doing just fine on an 8 week schedule and at 5mg/kg. Labs have been great with occasional weird blips that always seems to go away with the next set. I sometimes wonder if this is how the human body simply functions and we only see it because he gets labs run every infusion.

Not much else to report because it's kind of boring around here - well, not tonight. Hope y'all get some boringness soon too. It's nice!

 

[Clash]

:birthday2:How awesome that he is doing so well! When C was able to do sports, before his joint pain got really bad he was told 3000 calories as well by und nutritionist. When he was trying to play catch up the GI started him a little over 3000 but 80% was his formula or was supposed to be ended up being more like an 80%/40% plan haha! :birthday2:

 

[GwensMom]

I love seeing posts like this! It gives me hope that we might get back to some sort of "normal" living eventually. Gwendolyn's birthday was the first of this month and she was sick so we still have yet had a chance to celebrate properly. We were suppose to do that tonight.. but since she was sick the other night that was cancelled too!

Happy Birthday to your DS!!! It sounds like it is going to be a fun and memorable 15th Birthday!

 

[my little penguin]

Yippee!!! So glad he is growing and celebrating like a 15 should be with friends .
Long may it continue

 

[Maya142]

:bdayparty:
Happy Birthday to your son! So glad he's doing better, hope it lasts forever!!

On the topic of Celiac, I had some amazing gluten free brownies recently - I was shocked to hear that they were from a Betty Crocker brownie mix. Not sure if those would help him get his calories up (because they certainly got mine up for the day )

 

[Jmrogers4]

Happy Birthday L! Hope for many more "normal" birthdays. So glad he gets to celebrate
Yep, 3000 calories here with activities.
Hope you get some rest Mehita

 

[Sascot]

:birthday2:
Yay, glad he is doing so well

 

[Catherine]

Happy birthday

 

[Mehita]

Why is it every time I share good news, two seconds later I have to eat my words?

I was woken up at 5:30am by DS's friends. He was throwing up. Ugh.

We've narrowed it down to 1) gluten, new bakery 2) too much sugar or 3) motion sickness. DS says he was having a dream and he was in some sort of shaky swerving vehicle which was making him motion sick in the dream... so he threw up in real life.

What a way to start your birthday! Hope it's not an sign of what's to come this year...

 

[FrozenGirl]

That's unfortunate. Hopefully it is just another blip and he will be okay shortly.

 

[Mehita]

In checking with our Celiac support group, it sounds like many have had issues with this new bakery, so we're going to assume this mornings's adventures were due to gluten cross contamination. Bummer. I should have done my research.

He seems to be in good spirits, all things considered. As Dusty says, "Onward and upward!"

 

[araceli]

Happy Birthday. Hopefully is nothing. Best wishes.

 

[GwensMom]

Oh no..what a bummer. Hoping it was just the gluten issue and not something more. I am starting to get to the point where I am afraid to mention good news or progress because I'm afraid I'm jinxing myself. Just when we think things are back on track another shoe drops and something more comes up. What drives me batty is the constant guessing when trying to figure out what is causing the problem. Gwen got sick early Friday morning and I don't know if it is a stomach virus, the medication, or just something she ate didn't agree with her. I'm assuming it is a virus since my DS was sick the same night. I just wish there was a some sort of magic bubble that would pop up over their heads and said what exactly is wrong! Life would be so much more easier.

 

[pdx]

So sorry to hear that--hope that he feels better soon. (and hope that everyone got some more sleep after the 5:30 wakeup!)

Gwen's mom--I agree with everything you said. I feel like we're on a 2 steps forward, 1 step back journey at my house. At least the motion is still forward. My daughter has had so many sudden, seemingly out of nowhere setbacks, and we spend so much time trying to analyze what might have caused them. I would pay a lot for that magic bubble!

 

[Tesscorm]

I'm sorry about the early morning wake-up call! But, am hoping it was just the bakery and just a very minor blip! Aside from that...

:dusty: ... :birthday2: ... :dusty:

And re calories... when S was 16-17, and on EEN, he was given 3000 cal per day. The was quite physically active (hockey 3-5 times per week plus 2 hours phys. ed. per day) so he didn't gain alot of weight over the exclusive period but, once we kept him on supplemental (1500 cal/day) plus added in a regular diet, he gained much more.

 

[SupportiveMom]

I am glad therest was a simple fix to throwing up. Happy belated and I wish him a very health year!

 

[DustyKat]

Squeal!!!!!!!!!

I hope all has settled for your lad Mehita and he continues to go from strength to strength!

Onwards and Upwards! :ybiggrin:

Dusty. xxx