When There Aren't Any Answers

"It's not this, but it could be that."

"It's not that, but it could be this."

"He may be at the beginning of something else auto immune-related that goes hand-in-hand with arthritis." 

"Or, he may not be."

"He may have a food allergy."

"Or, he may not."

"His body is trying to tell us something. Something is definitely going on; something is trying to present itself."

"Why don't we try X, Y and Z and have him come back in a month for a follow-up."

Oh, what a wonderful mix of happiness, joy, confusion and frustration. Gotta love it. Gotta love this auto-immune roller coaster we are on. So, excuse me while I am "real" here for a moment. Excuse me while I get to be tired, exhausted and frustrated at the moment. Excuse me while I feel pulled in so many directions. Excuse me while I am very happy about the good news, but need to vent.

"What does this all mean?," you may ask. It means we do not have any answers yet. And we may never have any answers. All I know is, as his mother, something is not right with my son. Something is "off" with his system. Blood in stool is not normal. Chronic diarrhea is not normal. Vomiting after meals is not normal. Unexplained high fevers that come and go on their own are not normal. Tiredness and lethargy all day long for a four-year-old boy is not normal. This is not normal.

It is more than him just being a "picky eater." He will sit down to eat, suddenly feel sick and run to the bathroom and then complain of horrible stomach pain. He will ask me to save his food and to not get rid of it because he wants to "try again to eat." But the majority of the time he returns to the table after the pain subsides, he can not even take a bite because he feels so crummy. And, I am not going to force him to eat when I can clearly see how pale and sick he is.

Did I mention I am happy? Well, I am! It may be hard to detect, but I am! I am thrilled beyond words about the "good report" we received yesterday. I am focusing on that and rejoicing over this great news, but it is this "no news" that also puzzles me and hangs over me.

As of right now, the GI doctor said there is not enough "solid evidence" to say it is definitely Crohn's or definitely Celiac. Yes. After all my son has been through, after all the months and months of horrible symptoms, after going through an endoscopy, colonoscopy, and an upper GI we do not have any answers. Yet. 

So, the "X, Y, and Z" his doctor is suggesting is removing all dairy from his diet. They said it will take several weeks before we know if it was dairy that was upsetting him because it will take that long for it to be out of his system. And, if that is the culprit then I am BEYOND THRILLED! I don't want my son to have Crohns. I don't want my son to have Celiac. I want him well! I am tired of seeing both of my kids health suffer. Beyond tired. 

So, if that means "fixing him" by changing JJ's diet and controlling his joint pain through medicine then that is by FAR a better "diagnosis." We can work with that. That's the easy part. The hard part is the not knowing what to do for him right now.

After eliminating dairy from his system, if he is still having pain, they want us to try eliminating gluten. One thing at a time, though, because if we eliminate both at the same time right now we will not know which one was causing the problem, if it is, indeed, food-related. In the meantime, they want him on prilosec so he can take his arthritis medicine. Also, eliminating gluten from his diet will be more difficult because he is barely eating anything right now as it is. It leaves him with even few options. Right now he needs the extra calories since he has been over nine months now since he has gained a substantial amount of weight. 

We do not have any answers, so we will continue to take each day as it comes. There are still many questions left unanswered: villi damage in intestines, elevated CBir1 antibody. His blood work from Wednesday came back and showed he still has an elevated sedimentation rate still, which his doctor now thinks may be related to the arthritis. 

I spoke with the GI doctor again this morning and he said if he is still having pain through the weekend to page the doctor on call or to call first thing on Monday and we would "go from there." He wants to see him one month from now for a follow-up appointment. And the rheumatologist wants to see both Mia and JJ in the next week or so. 

I have told the story of what has been happening in his body to doctor after doctor after doctor. I have taken him to numerous appointments (while he is having horrible diarrhea episodes). We have been more than patient with trying to figure all of this out. He is tired. I am tired for him. I want him well. He needs a break from all of this. We all do.

That is where we are at. 

This is where I am at.

Waiting

Today was long.

We took JJ to Tufts today for his scheduled MRI (which I fought hard to have moved up). A nurse met us in the MRI department and told us, "Mr. & Mrs. Del Turco, there has been a change of plans." Always a fun thing to here when you've planned for something else....when you had your son do the "prep" for one procedure and told him "X, Y & Z are going to happen to you today," and they decide to change things on you.

She went on to tell us that JJ's GI doctor and the radiologist talked and decided the anesthesia for the MRI would be too risky for JJ. He would have to drink a bunch of barium and then they would have to put him out so he would be perfectly still so they could get the pictures they needed. She said the amount of anesthesia they would have to give him might be too dangerous since he is so young. If it was an adult having this procedure done, they'd be able to drink the barium and then lay perfectly still. Not a four-year-old boy, though.

So, after all that....they decided an Upper GI Series would be a better plan to try to figure out what was going on with JJ's digestive system. He had to drink a big, thick cup of barium and then had to lay on the table as they watched it travel through his body and take pictures of it traveling through. Then they had him go out into the waiting room and drink another cup of barium (we had to do a lot of encouraging and coaxing to get him to drink it) and every 30 minutes we went back in for more x-rays. Once it reached the end of his colon, they were able to get the pictures they needed and see the area they can not see when they did the endoscopy or a colonoscopy.

I must say, my son did a remarkable job. So proud of him!

After that, we went to see his GI doctor a couple of floors down. By that point, JJ was starving and all he could talk about was getting an egg and cheese breakfast sandwich at Dunkin Donuts. I think every doctor and nurse knew what my son was craving because he told EVERYONE! So funny! Despite everything, he brought some humor to the situation. Love that boy!

We met with his doctor who told us it would take 24 hours to get the test results back and that he thought JJ might have some sort of inflammatory bowel disease (Crohn's or ulcerative colitis). He told us he would review the tests from today and let us know (hopefully) tomorrow. He also told us not to put him on a gluten-free diet just yet, but that we could eliminate dairy because it causes a lot of tummy trouble. He kept telling us, "Listen, his system is trying to tell us something here. His body is trying to say something. Things are definitely not right. We will get to the bottom of this." So good to have a doctor who is fighting with you for your child.

After the appointment, we headed back up one floor so JJ could get blood work done again (he just had blood work done on 11/1/11). By that point, his tummy was starting to bother him. When we left the hospital, he complained about tummy pain the entire way home. My sweet boy....today was so hard for him!

So now, we wait. Hopefully, we will have more answers tomorrow.

For now, I pray everyone in our house gets really good rest tonight, including myself, for it has been an incredibly long day.

Clear Eyes, MRI and Wrist Warmers

Clear Eyes:

Mia has been on Indocin (4.5 mls, 2x a day) for 16 months now and has been doing very well on it. She does complain from time to time of pain in her writing hand (top knuckles), but other than that, she has been pain free! She also went in last Monday to MERSI to get her eyes checked for uveitis and got a report that her eyes are still clear! That is huge - she has had clear eyes since she was diagnosed with JA over four years ago. Thank you, God! 

MRI:

JJ goes in this Wednesday morning to Tufts for an MRI (with sedation). They will be checking an area of the intestines they were not able to see when he had the endoscopy and colonoscopy last month. What are they checking for? Well, right now he is showing signs of Celiac AND signs of Crohns. So, the doctor is hoping the MRI will point us in the right direction as far as figuring out what is going on in his body right now. We are praying for answers to what has been going on with him. He continues to have joint pain in his ankles, left elbow and left wrist, along with stomach pain, chronic diarrhea, rectal bleeding, and shin pain and bruising. He is still skipping meals and if does he eats he usually tells me afterwards he feels "yucky." He has thrown up a couple of times after eating. Sometime he will say he is hungry, sit down at the table to eat (then run to the bathroom) try to take a bite and feel sick. He will then ask to be excused to lay down on the couch, but requests that I don't take his food away because he would like to try to eat it in a bit. However, most of the times when he comes back to the table, he is still feeling too crummy to eat. And so, he doesn't. And, we try to start fresh again the next day....

His rheumatologist contacted me and wants him back on the Mobic (Meloxicam - 1.3 mls, 1x a day). He has been off of it for over a month now. His GI doctor agrees with the rheum - he needs to go back on it to alleviate his joint pain. The rheum said to back off on the Mobic if he is feeling any worse while on it. So, we will see how this goes. I started him back on it tonight. Right now, he has the rice sock (the only one we have that my cousin made for ME many, many moons ago) on his tummy and says his legs (shins) hurt and he feels "yucky." I do what I do every night: pray over him, make him as comfortable as possible, heat up the rice sock several times until he finally falls asleep with it either on his tummy or on his legs. In the morning, the first thing that wakes him up is tummy pain/discomfort.

I will keep you posted on how everything goes with JJ on Wednesday. He has an appointment with his GI doctor immediately after the MRI. Thank you to all of you who have texted, emailed and called to inquire as to how he is doing. We appreciate all of your love, prayers, kind words of advice and encouragement right now.

Wrist Warmers:

In other news, I was perusing Pinterest a few weeks ago and found these awesome "wrist warmers" - I like to call them "wrist soothers" or "pain alleviators" - for those with arthritis. I thought I'd pass them on to all of my arthritis friends (helloooo! stocking stuffers!!!). This seller, The Ferris Wheel, has several different "warmers" featured in their shop. My kids both want one (and I would not mind them having one of their very own so they would stop fighting over MINE! Ha!). Definitely a great Christmas gift idea for those suffering from RA and little ones suffering from JA. I know our rice sock is in constant demand in our house and gets used on a daily basis. I think I might need to pick up a few of these: