Sunday, September 7, 2014

GF Princess

As I’m walking around the corner, coming backing for a meeting in a co-workers office, another colleague stops me. “I was just coming to get you. Your cell phone and text messages have been going off like crazy. Someone is trying to reach you.” I left my phone charging in my office and it was out of sight for the past two hours. I pick up my phone and see that its Chris that’s called. I look at the clock and see it’s just after 4pm. He’s probably wondering if I will pick up dinner on the way home.

I give my normal call-back greeting, “Hey, what’s up?”

“I’ve been trying to reach you. The doctor’s office just called and Kensi’s test results are in. They want to see us now.”

During Kensi’s normal check-up, we asked for them to do an allergen test. We knew that she was allergic to adhesives in some Band-Aids, but wanted a full work-up because at times her eyes get watery and her nose runny. To us, it seemed like seasonally allergies, but wanted a test to be sure. Instead of a regular grid test to see if she was allergic to anything, they did a full blood work-up.

“What do you mean they want to see us now? What did they say?”

“When the pediatrician’s office called to let us know the results are in, they said we needed to come in for the results. When I asked them if that should be this week or next week, she instructed me that we needed to get here right away and the doctor wants to see us at 6.”

I shut the phone off, grabbed my laptop and my bag and ran out the door. The two and a half blocks to Penn Station look forever. I couldn’t run fast enough and I felt like I was about to puke. What could they find in blood results? My mind started to list the different types of diseases… juvenile diabetes, kidney disease, leukemia. Tears started to spill out and I almost fell running down the stairs to jump on the train home. I knew whatever it was, it wasn’t good.

From the train station to the house, I ran as fast as I could. Once in the door, I grabbed Kensington and hugged her as hard as I could. She asked me why I was upset and I just held her, telling her that I loved her and everything was going to be okay.

Chris and I hugged, grabbed the car keys and were out the door. Kensi was going to stay behind with Rasmus as in her mind, nothing as wrong.

We got to the doctor’s office and told them that we knew that we were early, but whenever the doctor could get us in, we wanted to see him. The waiting room was a madhouse; crying kids, sick kids, kids that were running around. We waited and waited. Six o’clock came and we continued to wait. Look, we understand there were sick kids in the waiting room, but you cant tell us the test results are in for our daughter and we need to get here right away and not expect us to want answers. We wait. 6:20 comes and we get called back by some teen-age nurses aid.

“So, what are you here for today?” she asks.

“Are you serious? We’re here for test results. We were called in.”

Looking at the results, she looks at us and says, “Is your son, Ken, here with you?”

“It’s our daughter, Kensington. Her file, which is in your hands, tells you she’s a female. Can you let the doctor know that we’re here and we’d like to speak to him. Now. “

“No problem. But if you want, I have the results here and if you give me a couple minutes I can try to see what’s going on and let you know.”

“No offense, but you have no clue as to why we’re here, you don’t know who our child is, whether she’s a boy or a girl, even though you’re looking at here file. I don’t trust you to read anything. Get me the doctor in here now. “

“The doctor is gone, but I can read these to you.”
“Look, I don’t know what type of [bleeping] operation you’re running here, but I don’t have the confidence that you can tie your own [bleeping] shoe. Get me someone in here with a medical degree, NOW!”

She walks out the door and Chris gives me the look. “Don’t you look at me this way. She’s a kid and I’m not going to have her misread anything when she doesn’t know if our child is a boy or a girl.” Okay, my Papa bear instincts have kicked in and Chris knows that if he gets in my way, I'll take him down as well. While there are times I know I should listen to him, when it comes to Kensington, I don't take advice. From anyone. The claws come out and someone is gonna get hurt.

Ten minutes goes by and I open the door and grab Kensington’s medical file that has been placed in the holder outside the door. I open it up and everything looks like it’s written in hieroglyphics. Everything down this long list of items are showing negative… except a couple items are that in bold and show positive. TRANSGLUTAMINASE, DEAMIDATED GLIADIN, ENDOMYSIAL ANTIBODY IgA… I snap a picture of the report and launch Google on my phone. The 12 year old girl comes back in, “You can't look at those.”

“Did you find me an adult that I can talk to?” I snap back.

“PAUL!” Chris throws at me. I throw him a look and then I retract my claws.

“Look, I’m sure you’re sweet and all, but you cannot tell me that something is wrong with my daughter and not expect me to want to know. I’ve asked for a doctor and I want one in here right now.”

“It’s our policy that you can’t see those. Someone will be in here in a moment but I need you to give those to me now.”

“I honestly don’t give a [bleep] about your policy. And I’m not going to give anything back to you. Get me your supervisor in here now.” And I return to my google search. “Chris, endomysial antibodies are in her small intestine. Something has affected her Villi and her epithelial cells.”

“Hello. Can I help you?” Another employee walks in.

“Yes, are you a supervisor?”

“No. I’m one of the nurses here. I see that the door is open and it should be closed.”

“Can you please go get us a doctor so we can know what’s wrong with my daughter? “

“Sorry sir, but you can’t look at that test. I need them back.”

“Look, I’m not looking to get into an argument with you. I’m really not. We were told to get here right away, but wait until 6. We waited until 6:20. We know there are sick kids in the waiting-room and those take priority, but you can’t tell us something is wrong with our daughter and expect us to wait longer than we need to. I will hand these back to a doctor, but no one else.”

“Sir, it’s our policy… “

“Again, I don’t care what your policy is. I didn’t sign anything, never have been informed of this policy ad I don’t see it in writing anywhere. Show me where your policy is publicly displayed. Can you do that? No, you can't. So stop telling me about a policy that is written and shoved in a binder somewhere. If you want these back you will either get me a doctor in here or get a police officer to remove me from this room.” I turn back to Chris, “Her endomysial antibodies are extremely high. Anything from 1.41 – 3.90 is ‘high’, hers is coming back at 67.” The nurse leaves and two minutes later a supervisor walks in the room.

“Can I help you?”

“Yes, you can. As I said to two other of your employees, get me a doctor.” I go through what has occurred through the day and she looks at me and said, “I fully understand. Why don’t I make you a copy of the results so when they are read to you, you can be reading along with them.  I’m sorry that you have encountered a series of mishaps. We are quite busy right now but I will go find someone that can read these to you immediately.” And within 90 seconds we have a PA in the room.

“Hi, I’m [name] and I’m sorry its taken some time to get here. Dr. [name] had to leave but I’m his Physician’s Assistant and I will be more than happy to assist you. If you please give me a moment, let me review the entire file on your daughter and I can let know you what the test come back and say.” After what seems like forever, she comes back and say’s, “Okay the test results came back with some abnormalities and it looks like – while further testing needs to be done – Kensington’s comprehensive results came back positive for Celiac Disease.”

“Okay, what does that mean?” As I type it into Google as I'm speaking.

“She has gluten intolerance. The good thing is, once we take gluten out of her system, she’ll be fine. That’s the treatment. It’s actually quite common.”

Note: Celiac disease is an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.  It is estimated to affect 1 in 100 people worldwide. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body. Left untreated, celiac disease can lead to additional serious health problems. These include the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS), dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, and intestinal cancers.

I tried not getting upset but I couldn’t hold it back. “Look, I’m not taking it out on you, but your staff should NOT instruct parents that they need to get into the office now, to drop everything, for a gluten allergy. When blood test come back and we’re told we need to get here now, ones mind tends to go to the worst thing imaginable. Gluten intolerance doesn’t compare to Leukemia which is what we though we were being told.”

By the time I was out of the office, I had already found the name of the head of the top Celiac specialist in the country online and left a message. The good news was, the center is here in NYC.

Two days later, we were sitting in the office of with the head of the Pediatric GI Department at Morgan Stanley Children's Hospital. During those two days, Chris, Rasmus and I had done over 20 hours of research on Celica and felt pretty confident in what laid ahead. This visit was a consultation. He wanted to get to know Kensi and ask us some questions prior to reviewing her medical records. Based off of what we told him, he suspected that it was indeed Celiac, but a biopsy of her small intestine needed to be done.  As he’s describing the process, I pass Kensi – who was sitting on my lap – to Chris and brace myself as I’m about to pass out.  The fact that they need to put her under, and go through her mouth to get to her small intestine and cut out a portion of her Villi to see what the damage is, if any, is making me breakout in to a cold sweat. I’ve worked for healthcare organizations all my life and the one thing that still gets to me is the thought or the sight of blood. I can’t even give blood (which I do one a regular basis) without fainting if I see the tube that is in my arm. All in all, nothing would be conclusive until we get those results. The initial blood results could be a false positive and in order to know if it is Celiac, a biopsy must be done.

Two weeks go by until we have our appointment for the biopsy. During this time we’ve told Kensi what was going on and what to expect. The hardest thing for her was not having anything to eat or drink prior to the procedure. She’s already scoped out the gift shop at the hospital and told us what she wanted when she woke up.

It’s 5:30 in the morning and we arrive at the hospital. Doc McStuffins is at Kensi’s side all the time.

The staff could not have been more amazing. As we walked into the Laura Rothenberg Bronchoscopy & Endoscopy Center at the Children’s Hospital, we were greeted with warm smiles and big hugs. They treated Kensi like the princess she is. After doing all of the in-take forms, we were escorted to an exam room where Kensi meet other members of the staff and had her vitals taken, and then was able to choose the flavor of her anesthesia, bubble gum, and the color of the balloon that she would be able to look at (blue). Once her doctor came in and chatted with her for a moment, she was cleared to go.

The procedure itself took less than twenty minutes and then Kensi took about an hour to come out of her sleep. While we were informed that there was a small chance that something would go wrong during the procedure, her doctor come out and said it went perfectly fine. No excess bleeding or perforation of the bowel. We were told that the results would be back within a week.

This past Thursday, the results came in. She tested positive for Celiac. While she hasn’t been showing and symptoms or complaining about pain, her villi is affected. Once she goes on a gluten-free diet, her small intestine will start to heal itself and, because of her age, it should only take a couple weeks before its fully repaired. Because it’s a chronic autoimmune disease, it means she will not grow out of it. The treatment is a lifelong adherence to a strict gluten-free diet.   

In the coming weeks we will be meeting with a world renowned dietician, one that has written the book on living a gluten-free life because of celiac disease who will b helping us create a personalized treatment plan for Kensington. With that being said, we have decided that in order to show Kensington that we fully support her and the challenges that lay ahead, we too have decided to live as a gluten-free household.  We can’t imaging eating imaging eating something in front of her knowing that she’d love to have it, but can’t. So, a family that eats gluten-free together, stays together [I want you to know, I’m already having reactions to gluten being out of my diet].

This past weekend, there happen to be a large Gluten & Allergen Free Expo (yes, such a thing exist). We met hundreds of other celiac families as well as the president of the Celiac Foundation.  We’ve already looked into a Celiac summer camp (meaning their kitchen is completely gluten-free), as well as other programs that we will be taking advantage of. Luckily for us, Kensington isn’t reacting to gluten the way other kids are; at this point in time. Where others have severe reactions if they come in contact with Gluten, we caught it at the early stage where her body isn’t fully rejecting it, it’s just not absorbing it the way it needs to be.

The items we brought back from the Expo.
Does this suck? Absolutely. No one wants their child to have to worry what they eat, or knowing that she will be at birthday parties where she won’t be able to eat the cake like the other kids, or eat the candy that is in her trick-or-treat bag. But such is life. Knowing the diseases and disorders that crossed my mind the when the pediatrician wanted to talk to us, this is a blessing in disguise. I’ll take this any day. Now, no one said papa may not cheat at What-A-Burger on his next business trip to Texas, but it won’t be in front of her!

Now we’re in search of the perfect costume for Halloween. She’s gonna go as the Gluten-Free Princess.


Mrs. McB said...

Ugh - what a horrible process to get the answers you needed! I am sure the GF change will be hard at first but so happy there is something that can be so "easily" done and it wasn't any of he things your mind first jumped to.

debi g said...

Our nanny and her daughter were probably at that expo! They are both gluten free and eat far better than we do. We've even started making GF stuff for them since they've become a fan of beans and her GF snacks.

Liz said...

A mom whose blog I follow has a daughter who was diagnosed right at Kensington's age. It's
She has discovered things like the best gluten free play doh, where to order gluten free candy to swap on Halloween, etc. I'm sure in the last weeks you've probably learned more than most physicians know about celiac...but I just wanted to put it out there.

I love how you handled the office staff, as it is COMPLETELY inappropriate to tell a parent to come "now" for "blood results"...of course anyone's mind would go straight to leukemia.

It's Daddies. Plural. said...

Liz - Thanks for the recommended blog!! Extremely helpful!