So long Remicade

Sick, sick, sick.

Back to the GI dr. Josh went yesterday. He had his last Remicade infusion on July 21st and it's done NOTHING to help... he's still in so much pain, running fevers, having nausea and making frequent trips to the bathroom.

They first started him on Remicade last Summer when he was admitted in the hospital. It worked amazingly well and fast! After the first few treatments, they quickly lost their effectiveness though.

The dr. wanted to add on 6-MP w/ the Remicade, but with all the aweful articles about lymphoma's that have popped up with children on that mix of drugs, I was unwilling to let him add it in. I hate all the drugs quite frankly.  I feel so much guilt letting him take them.

Anywho, so the dr. decided to take him off the Remicade since it's clearly not working. He left it in my hands on what to do next.... All the options suck. But with him being SO sick for so long, I felt I had no other choice, but to go along with his suggestion. So they are putting him on Prednisone (steroid) and a low dose of Methotrexate.

I hate Prednisone. The side affects are horrible... they make his face get so round and puffy (the notorious "moon face"), plus his mood changes so much. He becomes so nasty and irritable, which if you know Josh, is COMPLETELY out of character for him. It's frustrating to see him go through that. It also takes them a long time to ween him off of it, which makes all these side affects just drag on and on..... But, it works.. *sigh*

He started his first dose last night. My heart hurts. He's suppose to start the Methotrexate on Friday. I read on the packaging that it can cause hair loss. ....seriously?

I wanted to avoid these toxic medications and try enteral nutrition or other dietary changes first, but I just felt like it was in his best interest to get him better fast at this point. With the recent weight loss from being too sick to eat.... I'm just plain scared. I hoping that this will all get him stable... he's been sick for far too long.

ox

It's just a milk allergy...

Shortly after Josh turned 2 years old, he started having a lot of diarrhea, which then turned into a lot of diarrhea and blood. Our pediatrician blew it off to a "milk allergy" and told me to just remove milk from his diet. He didn't do any blood work, but I was a new Mom, and I trusted that a DOCTOR knew what he was doing, so I followed his orders. I removed all milk, yet nothing changed. I'd call the Doctor and he'd tell me to be more NEUROTIC about keeping milk out of his diet..... After 8 months, I once again called the Doctor and insisted that he send us to a specialist. He then gave us a referral to a Gastroenterologist at Boston Children's Hospital.

At our first appointment with the GI doctor, she listened to his symptoms and assured us it was probably just a polyp or something minor. She left the room to get a stool collection kit for us.... when she saw what his stool looked like, she asked if it always looked like that. I said yes. Then I could tell that her face changed and that this was no longer something minor. She called us that night and said she wanted him admitted into Children's Hospital the next morning for a colonoscopy and endoscopy... she was concerned that he might have Ulcerative Colitis or Crohn's Disease.

I cried and I packed.

I remember snippets of our 5 days in the hospital.

I remember that since he was admitted so suddenly that there was no time to do a "cleanse" before hand, so they had to put a tube up his nose and down into his stomach so they could directly pump in the cleansing fluids. I remember him being held down on the table while they put the tube in his nose.... him looking at me with a look of panic, while screaming..... I remember feeling SO much guilt. I wanted to grab him and run home.

But I couldn't.

He endured IVs, loads of tests and in the end on his 3rd birthday was diagnosed with Ulcerative Colitis.

He was put on Prednisone and Sulfasalazine......

and the journey began.......

xo

Here we go...

I'm not really sure why it's taken me so long to start a blog dedicated to our journey with IBD.

Recently, I've been doing a lot of blog reading about Crohn's Disease and diet and realized... hey, I wonder if OUR journey might help someone else. So here I am.

I'll go into more details in another post, but wanted to give an initial "hello" first.

My main plan for the blog is to chronicle our journey with trying out a gluten-free diet, so see if it helps with his symptoms, but I'm sure it will end up being a good mish most of ramblings, so be forewarned. :P

Thank you for reading!

xo

Welcome!

Excuse the dust while I get this puppy set up! Blogger has been wonky today, so trying to get things squared away now...

Stay tuned!

xo