Oh. Yes, we do.
Katie likes to go around telling people that she has diseases now.
The fam already knows about it thanks to this email I drafted up.
Instead of re-writing the whole thing, I'm just gonna copy paste the email (with some edits) because I'm lazy. And then I'll put some never before shared details at the end so I don't forget them.
Katie had been having G.I. issues throughout the school year. It was in June that I decided that this just wasn't ok and took her in to our doctors. They referred us to the G.I. clinic of Seattle Children's.
At our appt @ Children's in July, the G.I. doctor did an exam, ran a bunch of blood tests and requested a stool sample. The findings led him to request us to schedule an endoscopy and colonoscopy w/ biopsies. There was something that just wasn't right and the blood and stool tests were not pointing in a general direction. More info was needed.
Katie had that procedure the week after her birthday on Friday the 22nd. At the end of the procedure, the Dr. let me know that he had a strong feeling that she had celiac disease - based on the information and visuals he now had. We were to start a gluten free diet and he would follow up with the official results in a few days time.
He called on Wednesday the 27th. Katie does indeed have celiac disease, but she also has crohn's disease, a form of inflammatory bowel disease (not to be confused with irritable bowel syndrome - completely different!!!!!). Both of these diseases are life long. There is no cure.
For those who aren't familiar, here is some information about both.
Celiac:
When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine. These villi promote nutrient absorption. If they get damaged, nutrients cannot be absorbed into the body.
It is hereditary. People with a first-degree relative with celiac have a 1 in 10 risk of developing the disease. The only treatment is lifelong adherence to a strict gluten-free diet. Ingesting even small amounts of gluten can trigger damage - such as crumbs from a cutting board or toaster.
Crohn's:
It is a lifelong inflammatory bowel disease. Parts of the digestive system get swollen and have deep sores called ulcers. Crohn's is usually found in the last part of the small intestine and the first part of the large intestine. But it can develop anywhere in the digestive tract - from the mouth to the anus. Doctors don't know what causes Crohn's. They believe it might be an abnormal response to bacteria in your intestine or a response to other bacteria or viruses.
Crohn's disease runs in families. Your chances of getting it are higher if a close family member has it. The main symptoms of Crohn's are belly pain and diarrhea (sometimes with blood). Some people have diarrhea 10-20 times a day.
Symptoms can come and go. When symptoms are not present it is called remission. This may last a few days to a few months to maybe a year or more. But, there is always the chance of a flare up when symptoms return. Thus, the patient must always be on some form of maintenance medication schedule.
Between both of our families we have occurrences of both of these types of diseases. We have celiac on one side and we have a form of inflammatory bowel disease (ulcerative colitis) on the other. I guess we got the best of both families goin' on over here. : )
We have a follow-up/sit down appt. with the G.I. people at Children's in September at which time we'll discuss a treatment plan for Katie. We'll also be meeting with a nutritionist to discuss the change in diet necessary to keep her as healthy and happy as possible.
The mood here on the home front is, for lack of a better way to explain....okay. Of course, no one would be happy learning that their child has a chronic illness. And I have frequently over these last couple of days cried at yet another set of restrictions that Katie will have to endure.
I think, that we have already mourned the loss of normalcy when we found out about the food allergies. And, visiting Children's hospital is always a sobering experience. Just seeing the cars in the parking lot with the "Days in Remission/We can Beat Leukemia!" signs painted on them is a reminder that there are much worse things in this world to worry about. But it's still a very heavy thing to once again have to face the fact that eating food can, quite literally, kill our kids.
If you are interested, here are some really good sites about celiac and crohn's.
(all about inflammatory bowel disease(IBD))
(things about celiac and IBD)
(explanation for kids about celiac - it's easy to understand)
(fantastic info on crohn's. If you're interested, there is a link to a video series called "Growing up with Crohn’s Disease – What Every Family Should Know")
Ok, here's the new stuff ...
The day of Katie's endoscopy and colonoscopy, Mikey came down with a nasty cold/upper respiratory thing. He was feeling yucky all morning while we were at the hospital. After lunch, we were taking it easy since Katie was still recovering from anesthesia. Mikey was tired too and I decided to lay down with him on the couch. He ended up puking all over me. A little while later, he puked all over Huzbend. Then he spent the rest of the day on the bathroom floor. Puking, coughing, blowing his nose and his breathing was getting steadily worse (yay for asthma!). The puking finally stopped somewhere around 1am thanks to the miracle "No-Puke" pill I had from the last time we were at the doctors for this same thing. We were able to get his blood O2 levels back to a close normal using his albuterol puffer.
On Monday, the 25th, I had to take my kids to the doctor for their yearly check-ups and to refill their epi-pen prescriptions for the school year. Katie was coming down with the yuckiness that Mikey had. Instead of burpies, it was coming out the other end. Her cough was bad and her breathing was becoming an issue. Doctor said that if she wasn't better by Wednesday the 27th, to bring her back in.
She didn't get better.
Wednesday, August 27th. WORST. DAY. EVER.
We took her back to the pediatrician on Wednesday. While we were there getting Katie checked out for this upper respiratory thing, I got a phone call from the doctor at the G.I. clinic at Seattle Children's. They gave me the diagnosis of celiac and crohn's while waiting in the room for the pediatrician.
Hung up with them, a little shell-shocked, to then have the pediatrician come in, take a listen to Katie and send us for a chest x-ray. While waiting for the x-ray, the G.I. clinic calls back to get information about our pharmacy so they can send them a prescriptions for some meds to treat crohn's. On the way back from the x-ray (it's in the same building), the school nurse called to verify allergy information. I had to tell her about the celiac and crohn's. I almost cried. Too much. Too much.
We got back into the exam room and the doctor returns with the diagnosis of pneumonia. Sigh.
More meds waiting at the pharmacy. Scheduled a follow up exam on Friday, the 29th.
We got back home. It was a hot day and Mikey requested to pull out the pool for Ralph and him to play in.
See this quite calm and cute picture?
Well about 20 minutes after taking this picture, Mikey had a temper tantrum due to the fact that I shut the water off on him because he was not sharing it with Katie and was spraying her when she didn't want him too. I had to pick him up and carry him to his room for a time out. In my rush, I forgot to close the back door and the gate to the upstairs area. My bad.
While carrying Mikey away screaming Ralph took his cue and got all "hyper puppy". He began running crazily around the deck. He jumped into the pool and absolutely, completely soaking wet tore into the house, into the carpeted living room, jumped on to the couch and then booked it upstairs. Everything was soaked. Mommy needed a time out after that.
I told you. Worst. Day. Ever.
Thursday the 28th was my first PTA meeting of the year, the yearly meeting with the school nurse to talk about allergy plans and Mikey's Kindergarten Open House.
Katie seemed to have more energy - but was still coughing and looked super pale. I kinda didn't have a choice but to bring her along.
The meeting with the school nurse went well. She is super nice and come to find out she also owns a black lab. So, we had A LOT to talk about besides epi-pens, allergies and all our new diseases.
Mikey was excited about the Open House.
He got to meet his teacher, do a scavenger hunt around the class room and I got to fill out paperwork. Then he got to play at the recess playground and enjoy a PTA sponsored popsicle.
Friday came along and Katie didn't seem as pale. Mikey received his Halloween costume in the mail.
I'll let you guess who it is...
Like all good superheroes, he takes time out to watch Mickey Mouse.
We went to the follow up pediatrician appointment and Katie still did not sound better. Very wheezy. So, we had another x-ray taken. The pneumonia was getting worse. We did not have to go to the Seattle Children's emergency room this time, but got sent home with new antibiotics and the orders to visit the Urgent Care center the next day to see if there was improvement.
Luckily, there was.
No hospital for us this time.
I did not like August 22nd through 31st.
