Mini update - Growth!

[Mehita]

So happy! At his last Remi infusion on May 30th, DS is at the 20th percentile for weight and 11th for height. This is the highest he's ever been for either measurement since dx six years ago. Back then he wasn't even on the charts.

All his labs continue to be in the normal range and we haven't seen any notable side effects from Remicade. The fatigue he has had at week 6 is always explained away by something else. This last cycle wasn't bad at all. I'm not going to freak out yet, but even though his labs have been normal, they have been creeping up within the normal ranges. I don't know if that means anything, but it's on my radar. My husband pointed out that labs are drawn BEFORE each infusion, so it could just be indicating that it's time for a refill.

Oddly, his best friend's little sister was just dx'd with influenza B today. Needless to say, we're keeping our distance. Influenza B in June!

We did the Take Steps walk last weekend and had a lot of fun. The best part? Seeing him run around with the other kids playing frisbee. I just kept pinching myself.

For the summer I've decided to take a break from probiotics for a bit. Tempted to drop the Vit D too seeing as he'll be outside a lot now, but not sure. Any thoughts on that? We'll be checking vitamin levels at his June 16th GI appt. I will start everything back up in mid to late July before we sit on a germy airplane for 18 hours.

Now that I've shared all this good news, I probably pissed off the flare fairies. Hoping not to be posting from the hospital next week!

 

[JoFowler]

My Dr. says not to drop Vit D. We use sunscreen to block the sun and she believes that we would not get enough Vit D from the sun even if we didn't. I went to Florida for a week the first year of taking Vit D and didn't take any that week. I just happened to have bloodwork done when I got back and my levels had dropped quite a bit!

 

[Johnnysmom]

Great news!!

If he starts showing symptoms of influenza B, tamiflu worked great for Johnny this year. His sister had influenza B and they started him on the preventative dose and he never got it. She was on it within 24 hours and was better the next day! Hopefully you can just dodge that one!

 

[Tesscorm]

Great news! :dusty: I can see you beaming!!

FWIW, S's labs have often moved up and down (even popping outside of normal ranges) since being on remicade but they've always returned back to normal, so the moves you're seeing within normal probably mean nothing.

S also stays on vit D throughout summer.

As far as the flu... S's roommate was diagnosed with mono in November , S didn't catch anything. S did have strep a few weeks ago, luckily mid-remi cycle (so no delays in infusion), took his antibiotics and all was fine. Hopefully, the flu will be a non-issue!

Keep enjoying the good times! :sun:

 

[Farmwife]

Great news about the growth.

 

[Maya142]

Wonderful news ! Hope it lasts forever!!

 

[Brian'sMom]

Great news!!! Growth and being "normal" and running around is wonderful news.
We go on the walk in our town this weekend.

 

[araceli]

:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:Wonderful news.

 

[AZMOM]

Awesome!

:hug:

 

[SupportiveMom]

So wonderful to read! Growth is a fantastic positive!!! I am thrilled he was out enjoying Take Steps. You deserve some positive news. May it continue and you ate able to keep the fairies at bay!

 

[Niks]

Fabulous news!!!! :banana::banana::banana:

 

[kimmidwife]

Great news!!! So happy to hear!!!!