RAISING JOEY

The results

So thankfully Joey’s colonoscopy came up negative for celiac which means that he was not being exposed to gluten and also came up negative for Crohn’s Disease. The one thing it came up positive for again was his lymphocytic colitis. He had blood in his small bowel and that blood was washing back up into his stomach which would be why he had blood in his poop.

His GI doctor prescribed him on medication which he has been on for about 1 1/2 weeks and I’ve already noticed a slight change for the best! This medication can take several weeks to work so we’re just keeping our fingers crossed and pray that it works!

As for his behavior, he’s still hitting his head into the walls whenever he gets upset. We keep his weighted vest (which does help some) on him as often as we can but days like today where the temperature is going to be in the mid 80’s, I don’t want to chance him getting overheated.

I’m also hoping that Joey’s new stomach medication might help to lessen his bad behavior. I often wonder if he’s acting out like he does due to his stomach hurting.

I’ve also been in contact with Boston’s Children’s Hospital which has an excellent Down syndrome clinic. So it looks like sometime in July we’ll be making a trip up to Boston so see what all they have to say.

More tummy woes

So we’ve had our hands full with still trying to unpack and getting settled in especially with Joey. The poor kiddo just does not adjust to change very well at all. We’re still having behavioral problems with Joey hitting his head into walls and crying a lot. And to top that off, he’s been having issues with his stomach again. His BM’s have been testing positive for blood, so yesterday Joey had another colonoscopy/ endoscopy to see what was going on in there.

The endoscopy was perfect, nothing wrong detected. When his doctor got to his small bowel, there was a lot of inflammation and blood. There was even blood in his stomach which Dr Z thinks is backwash from his small bowel. Also, a section of his colon was thicker than normal.

There could be three different things wrong with him that would be causing him to have bloody poop, he could now have Crohn’s Disease, his lymphocytic colitis could have turned into inflammatory bowel disease, or his Celiac Disease (even though he’s on a gluten free diet)

We’re not sure if somehow he’s been getting exposed to gluten. Last year when Joey was tested for Celiac Disease, it came up negative, which doesn’t always mean that an individual doesn’t have a gluten intolerance or Celiac Disease. I’ve been so careful with my cooking, I check every single label before fixing Joey ANYTHING to eat. My only thought it that perhaps he’s getting cross contaminated somehow. I just don’t know.

The one thing I do know is that the results can’t get here fast enough. We should hopefully hear something by Wednesday evening or Thursday.

I’m also hoping and praying that perhaps his current behavioral problems are a result from his stomach hurting and when we get that under control, the head banging and crying will stop.

Gluten Free Gravy

Last night as I was cooking dinner, it dawned on me that Joey couldn’t have the gravy on top of his potatoes like the rest of us were having. Thankfully, I still have yet to accidentally give Joey anything with gluten in it since we’ve changed his diet. So, I’m going to try this one the next time we have potatoes with dinner.

Beef Gravy
2 cups beef bouillon broth
3 Tbsp cornstarch
2 Tbsp butter (or drippings)
1/2 tsp onion powder
1/2 tsp salt dash of pepper

Instructions
1. In a small saucepan heat mix cold broth and cornstarch with a wire whisk.
2. Add butter, onion powder, salt, and pepper.
3. Cook until thickened, stirring frequently.
Makes 2 cups.

Finally!

Well, wouldn’t ya know it?! The gluten free diet is REALLY paying off! Joey hasn’t had a BM blowout for almost the past week since we started! It was crazy, within 2 days of starting the diet, we could tell a huge difference with his BMs and now he’s having formed poop (just what you wanted to hear, huh?).

Anyways, I’m ONE HAPPY MOMMA!

He’s still having major sensory issues but he’s more happy than what he was on the Pentasa medication.

As for me, I’m still here, still pregnant, LOL! My c-section is scheduled for September 14, so as long as Aiden can wait, that will be his birthday!

We’re in the process of packing to move to our new house but unfortunatly, we’re still waiting on the final word for our mortgage so if you could please say a prayer that everything falls into place, that would be great! Our contract says the latest we can close on the new house is August 21, so I really hope we hear something soon!!!

Gluten Free Day #2

We managed a completly gluten free day yesterday! PHEW! At least I didn’t screw up any of his foods, LOL! Leah and I made a shopping trip yesterday and Ocean State Job Lots actually had an awesome supply of GF pastas and baking supplies so I bought pasta, GF baking flour and some sort of hot cereal for his breakfasts.

So for dinner tonight, Joe-Joe will be trying this one…

Gluten Free Mac & Cheese

Ingredients:
8 oz. of Velveeta (add more if you want it really cheesy)
¾ of a bag of gluten free elbow macaroni
3 tablespoons butter
¼ cup milk (more if you want it really creamy)

Directions:
Make elbow mac and drain. Add other ingredients and mix until melted.

Gluten Free day #1

Since today is our first day going Gluten free with Joey, I thought I would share a fun playdough recipe with everyone since I found out last night poor Joe-Joe can’t even play with the old school Play-Doh brand playdough!

Gluten-Free Play Dough
Ingredients:

½ cup rice flour
½ cup cornstarch
½ cup salt
2 teaspoons cream of tartar
1 cup water
1 teaspoon cooking oil
Food coloring, if desired

Directions:
Mix ingredients. Cook and stir on low heat for 3 minutes or until it forms a ball. Cool completely before storing in a sealable plastic bag.

The latest…

So taking Joey off the Pentasa (medication for his colitis) has helped with his behavior. He’s been slowly coming back to the old happy Joey and this momma couldn’t be happier! I left a message for Joey’s GI doctor, Dr. Z to call me yesterday and she called me back this morning and we’ve decided to put him on a Gluten Free diet.

I’m just so happy and grateful that a lot of his behavior was caused by his medication and not something neurologic!!

She said the odds of him having both Lymphcyctic Colitis and Celiac Disease are very high. And after reading what I have about both LC and CD, and Dr. Z said with the number of kids who have Down syndrome and Celiac are higher, it sounds like that’s what we’re dealing with. She said even though the Celiac didn’t show up when we tested him via Colonoscopy, it doesn’t mean he doesn’t have it. She said it’s getting harder and harder to diagnose Celiac Disease. So, Dr. Z said, we might as well say he does have Celiac Disease but we might wait a couple of years to test him again.

We’re going to go ahead and start him on a Gluten Free diet. My hopes and prayers are that going Gluten Free will not only help him stomach problems but also help with his behavior and maybe even his language.

Dr. Z is going to have one of CCMC’s Nutionists call me to make an appointment for us to learn more about Gluten Free diets.

We’re also still not ruling out the Sensory Processing Disorder since he’s always been such a sensory kiddo, so when he goes back to school in September, he will be evaluated for that.

So much to do, so little time. I’m 33 weeks pregnant, we’re in the process of buying a house, gotta switch Joey to a Gluten Free diet, am I missing anything???

Huh???

Joey finally had his appointment this morning with his GI doctor. I’m so grateful that we went and got the answers I did!

I mentioned Joey’s changes in his behavior to Dr. Z and she was VERY concerned and is wondering if it’s the stomach medication (Pentasa) he’s been put on. She looked back into his chart and the time he was put on the medication is just about the same time his behavior started changing.

I mean, he’s always been a sensory kiddo but even with the sensory issues, his personality has definetly changed along with being more sensitive to his surroundings.

So, we’re taking Joey off his medication cold turkey for 2-3 weeks to see if there’s any improvement in his behavior. In the mean time, we’re going to be giving him Immodium to try to help to keep his BM blow outs at a minimum.

If there is no change in his behavior, he’ll go back on the Pentasa and we’re going to try a Glutein free diet.

Even though Joey was tested for Celiac Disease in April when he had the colonoscopy done, he may still have it. Apparently, Celiac Disease and Lymphocytic Coloitis come together a lot.

So, keep your fingers crossed that we get a good answer and the old Joey comes back to us!

I also spoke to Joey’s genetic doctor, Dr. Bob, and he is also concerned and wants Joey to go see a neurologist. I’m maybe wondering if we should hold off long enough to see if this change in medication works….

We are still going to go through with having the Sensory Processing Disorder evaluation done next week by an occupational therapist to see what she has to say.

So, did ya catch all of that??