June 27, 2008
Crohn's Disease

It's very fitting that my last post ended with me mentioning we came home from Disneyland and Keegan had a fever. The fever was a start of a rollercoaster ride that only will get the story to today as I post this from Children's Hospital of Oakland.

About a couple weeks after returning home from Disneyland Keegan's fever had turned into a severe sore throat. I took him to the doctor and he was diagnosed as having a throat infection. He was placed on Amoxycillin and since the throat cleared up we assumed it was just a run-of-the-mill infection. However, soon after his throat stopped hurting he was complaining his mouth hurt and after I looked inside I saw the inside of his mouth was covered in blisters, they were so bad the tip of his tongue would bleed at the touch. About this time we also became aware that he was abnormally greyish in color and looked as though he had lost weight. A return visit to the doctor showed us he had lost about 6 pounds in a week. Fearing that he was fighting a virus while being Anemic (Brie is Anemic) we insisted the doctor run some blood tests. To be honest the doctor seemed to do it more to appease Brie and I than because he thought there truly could be something larger wrong.

With the blood test back it was confirmed, Keegan was pretty seriously anemic, but not only that his hemoglobin levels were down too and he had lost another 4 pounds or so in the week we had waited for the results. By this point Keegan had taken to sleeping every couple of hours and was barely able to eat.

Our family doctor sent us to a Pediactric Gastroenterologist, who performed a rectal exam and began to discuss the possability that Keegan had an Irritable Bowel Disease (not to be confused with Irritable Bowel Syndrome) something like Crohn's Disease or Ulcerative Coilitus. He instructed us to gather some stool samples to run some tests but said as long as Keegan held steady we could wait for him to return to work in three weeks to decide how to move forward.

About a week later one of the specialists partners called to let us know that she had scheduled an EGB/Colonoscopy for Keegan on July 2nd. She hadn't realized we met with her partner and scheduled based on the severity of the blood tests she got a copy of from our primary care doctor.
In fact she had said if he was getting worse we should bring him to San Jose and get the procedure performed now. We honestly felt that Keegan was holding steady so waiting a bit longer would be ok.

This past Monday we took Keegan to a follow-up appointment with our primary care physician to see how Keegan's mouth had responded to the prescription he was on and what the specialist had said. Upon hearing what was going to happen he promptly told us that Keegan needed to start seeing a Pediatrician not him anymore. Our doctor is a Family Practitioner who specializes in allergies, not a Pediatrician and he felt if Keegan was indeed suffering from an Irritable Bowel Disease he needed the expertise of a Pediatrician. Luckily he recommended a doctor directly across the hallway from him and we had Keegan in the very next morning to have what we thought was a "meet and greet" of just catching her up to speed as we waited for July 2nd. She on the other hand had a completely different plan. She immediately ordered me to take Keegan down to the lab and get a more comprehensive blood work-up done. Within a couple hours she had called me back and told me I had 2 options. I either take Keegan to Stanford Medical Center or I take him to Children's Hospital of Oakland. After I shose CHoO since it was far closer she called and spoke to the attending on duty in the ER and they were expecting us.

About 2 hours later I met up with Brie at CHoO. Keegan was promptly taken into the Emergency room and started being triaged. Soon after we were taken to the Ultrasound lab where first a technician and then the actual Radiologist performed an Ultrasound. The Radioligist wasted no time in informing us Keegan had Crohn's Disease. He said he was quite sure, he had seen it on many occasions. He told us briefly about what he thought they would do, but said they had to further diagnose the severity and rule out a couple more things. So next was an x-ray. When we met back up with the attending ER doctor he informed us he had good and bad news. The good news was his initial thought that it was Cancer was incorrect, the bad news he too now believed it was Crohn's Disease. They admitted us into a room in the surgical wing and the wait for more tests to confirm the severity began.

The next day Keegan was taken down for a CT Scan. It made him a wreck, a CT machine is a scary sight, it looks not unlike the MRI machines you see on TV, accept smaller. You are placed inside the ring that spins around you taking 360 degree x-rays. We then met with the Hospital's Gastroenterologist and we discussed Crohn's Disease as well as decided that she really needed to go ahead with an EGB/Colonoscopy so she could see first hand his digestive track and see what areas were affected and how severely.

That brings us to yesterday. We waited all day to find out about the procedure. Keegan was taking massive dosage of Myralax (laxitive) to clean out his system, but with each BM he simply wasn't clearing out enough so they had to push back the procedure until this morning. He laso became tachycardic (his heart was working a little too hard) and it was decided he should receive a blood transfusion as well.

This morning around 9:40 am Keegan was taken into the O.R. and the specialist saw first hand what was going on inside Keegan and brought us back lots of pictures. She is as positive as she can be that Keegan has Crohn's Disease and not Cancer or some other disease that presents similar symptoms. With the procedure done Keegan has been allowed to eat again. Soon he will start an aggressive treatment plan that if it goes well could knock the Crohn's Disease into remission for years to come. It's not an easy treatment plan though. He is looking at taking medication several times a day for basically the rest of his life. Crohn's is an auto-immune disease (the body attacking itself) so immune suppressents and anti-inflammatories and often Steroids like Prednasol are the current recommended treatements. These drugs can have some serious side-effects.

Tomorrow we should all be returning home. We have a long couple weeks ahead of us beating this disease into remission.

We want to thank our families for their unwavering support. In particular Nana Qualls who drove to Tracy to have Sebastian and Madeline stay with her so Brie and I could focus on Keegan without added worry.

Posted by John at 08:36 PM