Jacob & Lili

Jacob & Lili

Sunday, December 18, 2011

The Good...The Bad...And the Gluten Free

Last week was my sit down with the kids pediatrician. She had in hand their various lab results. Although I knew what was coming, I don't think I was really prepared for hearing it out loud much less seeing it on paper. Here's the run down:

Jacob - confirmed for mitochondrial dysfunction. Similar to mitochondrial disease but not as severe. It is managed the same way the disease is, the Mito cocktail.

She suspects that he may either have candida or bacterial overgrowth in his gut. I had put off the stool labs because of the expense but will now have to do it.

Lili - She tested positive for a non-celiac gluten intolerance. Simply put, levels are high but not high enough to diagnose celiac, therefore a gluten intolerance. Her IgG testing confirmed this as well. She also has a dairy intolerance.

Her Vitamin D levels are lower than Jacob's which is concerning. For Jacob's to be low is "normal" considering he has an auto immune disease. So we are rerunning the celiac labs, this time the labs are being sent to a more specialized lab.

The doctor suspects that it is very possible that Lili may have a parasite or candida. So again the stool labs that I had put off will be done this week.

I left the doctor's office with more lab slips and more supplements then a drug store. The kids are now on the following supplements which are all hypoallergenic.

Jacob: Pro biotic
Vitamin D3
L-glut amine powder
CoQ10
Moducare
B12 shots
L-arginine (if he reaches he CoQ10 dosage)
Klaire-Vitaspectrum (multi-vitamin)

Lili: Pro biotic
Vitamin D3
B12 shots
Trienza Chews
DFH-GI Revive
Gluten - Free Diet

I think I've got a handle on making sure they are taking their supplements. I feel like a drug dealer two times a day. The B12 shots are being shipped out so that will start sometime this week. That is going to be a challenge.

I told Lili that when we got back from San Diego for Jacob's 6th scope, then we would start the gluten free diet. Well, today is the day. I took her with me to Whole Foods. She is not taking this very well. Everything I suggested she said no. I wanted to stop and yell at her. Tell her be grateful you don't have to have a feeding tube like your brother, but I managed to keep it together. We finally found some things that I think she will like. It was exhausting. Just like with Jacob, I have to read every single label. When we left I had food for Lili and Jacob, but had completely forgotten about myself and Gary.

On the upside, Jacob's scope went well. His doctor said his esophagus and stomach look really good. The biopsies will tell us truly if corn is a pass. I broke the rules this time around. I've let Jacob start his next food trial without having the results of the biopsies. He so much wanted to try ham and bacon while we were in San Diego, I couldn't say no. I did tell him that if the biopsies show that corn is a fail that he'll have to stop the pork for a few weeks. He was willing to take the chance. So in the past few days, he has eaten more swine then I think he's ever eaten in his life. Here's hoping corn is a pass!

Wednesday, December 7, 2011

One Year Later...

One year ago today, I received a phone call from Jacob’s GI at the time. His endoscopy results showed over 50 eosinophils, he was officially diagnosed with Eosinophilic Esophagitis. That was the beginning of one of the hardest years of my life.

As most would do, I immediately jumped on the computer and did as much research as I could. I educated myself on what EoE is, how it is treated, and what the possible outcomes might be. I suppose I was a bit naïve at the time thinking that we would easily find the trigger of his EoE with allergy testing. After all, Lili had gone through something similar though it was never said she had EoE. Through patch testing we learned that her triggers are chicken and turkey and I had hoped it would be that simple with Jacob.
But it wasn’t that simple. Allergy testing failed to point us in a direction. An elimination diet failed. As we tried one approach after another, Jacob’s symptoms continued to worsen. Feelings of anger, frustration, worry, and desperation would cycle through all of us leaving us exhausted.

As many times as I wanted to give up, giving up wasn’t an option. Lili was still in need of help and guidance with her own issues. She was in fourth grade, a transition year. Fourth grade meant more responsibility on her part but with 3 learning issues and a free spirit, this proves to be a challenge. Her teachers and tutor were amazing and did what they could to help knowing that Jacob was sick and needed more of our attention. Then in February Lili started getting sick again. Her acid reflux was back and she wasn’t eating. Not even weighing 60 pounds, Lili needs to eat. She was diagnosed with gastro paresis, a condition where her stomach muscles don’t contract effectively enough to send food into her intestines. Again, I did the research and found that there isn’t much that can be done for GP and sometimes a feeding tube is the only answer.

During all of this all I would say to myself: “I can’t do this.” “I didn’t sign up for this.” “This isn’t what having kids is supposed to be about”. No matter how many times I said this to myself, the reality of the situation is that I have to do this; this is what being a mom to my kids is about. There is no quick fix and no backing down. I had to keep fighting even when I just wanted to hide under the covers and cry.

Over the course of this year, we have travelled over 6000 miles looking for help. I have hired and fired 3 GI’s and our pediatrician. Both kids have endured countless blood draws and x-rays. Lili has had an endoscopy, a contrast MRI and 2 delayed gastric emptying studies. Jacob has had 5 endoscopies and 1 colonoscopy. He has gone from and elimination diet to an elemental diet. He has had an NG tube, a G-peg tube and now a Mic-Key button. His day revolves around being “hooked up” for his feeds and changing his gauze around his button. Some days he goes with the simple white gauze, some days with a button buddy. He is tube fed with rice being his only safe food. He will food trial, one food every 6 weeks and then undergoes an endoscopy to see if the trial is a pass or fail.

Lili’s condition remains untreated. This next year my focus will shift to her. She will be 11 and only weighs 60 pounds. She’s lost 5 pounds over the past 2 months. Something for her needs to change.

Having kids with special needs and who are chronically sick can be a lonely and isolating world. A world that most outsiders can’t really comprehend. Every moment of everyday there is worry in the back of my mind that something might happen. Days and nights seem to run together in a blur. You begin to grasp onto those rare moments where everything falls away, your kids are engaged in life and smiling, and there is laughter.

Thanks to the great world of the internet, there is an EoE family out there ready to help and answer questions. This disease is “rare” and we rely on each other to find answers that the doctors don’t seem to have. We are scattered around the country and the world but we worry for each other. I can’t say how many times I’ve needed help or advice and have been able to find help within minutes. It is a comfort to know that our EoE family is out there.

This year has tested my resolve. It has tested my patience, faith, and perseverance. It has dragged me down to my lowest lows, forcing me to fight harder than I ever have. I have watched my children suffer in pain and have watched them learn that pain is something that will be with them. This year has forced me to make hard and fast decisions over and over again. This year has thrown me into a world of doctors and medicine that most don’t see. A world where I may know more than the doctor treating my child.

Could things be worse? Yes they could and I know this. But knowing that my children’s disease is not fatal doesn’t alleviate the stress and pain that the disease dumps on all of us. But they look good, healthy even? Yes they do. But how many times have you felt horrible. You have a headache, a cold, a pain in your body but you put a smile on your face and continued on with your day because you have to. Then it is only when you get home, where you are safe and secure, does that façade fade? You would be surprised to learn that children can carry that façade even more convincingly that most adults. This year has taught me those lessons.

Moving forward, we will continue to fight. We will live life in spite of the hurdles. Jacob’s life has seemed to settle down and his disease has become part of our routine. Now I will take on Lili and her illness and hope that that journey isn’t as hair raising as Jacob’s. We will continue to hope for answers.

The Maupin's

The Maupin's