While we wait

Unfortunately this post will not have any pictures because I cannot get them off of my phone right now.  Once I figure it out, I will add them to it. 

Last Tuesday I took all five kids over to Labcorp to get blood drawn on everyone but Spencer to test for Celiac Disease.  My mom and Adriene, one of Bryce and Annalise's respite workers came with us to help.  Let me tell you, it is quite the feat to get all 5 kids up, dressed, prepped for school, and to the lab by 7am but we did it.  Drawing blood went well overall.  Bryce didn't make a peep, but poor Annalise was terrified and began screaming "all done!" before they even began.  It took two of us to hold her arms while they got the needle in.  :(  When they were finished, she said to the lady who drew the blood, "do not do that EVER AGAIN!"  She had fingers from both hands pointed at the lady and moved her arms for emphasis as she said it.  It was cute, but I felt so bad for her...especially knowing that she will have to have blood drawn again at some point in her life.

I just called the pediatrician's office to see if the results have come in and I was told that they are in and the doctor will call me later today to let me know what the results say.  Now I'm going crazy wondering what they say, wondering if others of our children have Celiac or not.  Knowing that the results are just sitting there is making me nuts.  So...instead of just waiting, I decided to catch you all up a bit. 

After the blood draw ordeal was over, my mom took my older boys to school, Adriene left, and I took Bryce and Annalise to school.  I then went with my mom to her Dr. appointment, where I discovered that a lady from church is the nurse there.  That was fun to see her.  I ran a quick errand and then had about an hour before I was meeting my visiting teachers at the park for lunch so I decided to go see a friend who had given birth just a few days earlier.  Her little boy is so tiny and it was great to snuggle a little one again.  It was also fun talking to Monica and her family.   They have twins as well who are Bryce's age.  As the little boy came in, he saw me and instantly ask where Bryce was.  He and Bryce have become pretty good friends.   

After a nice lunch and visit in the park, I headed back to start the afternoon school pick up.  It was Tuesday which is usually my night off, so even though John is in San Diego all week for work, I decided I wouldn't give up my night off.  Instead I used some respite hours and headed out.  I ended up going to Target to scope out Gluten Free food.  Not exactly a break, but it was nice to be able to browse the shelves on my own time.  I found quite a few "treasures" for Spencer and was happy that I would have something to send him in his lunch the next day.

Speaking of Spencer, he is doing so great at turning down foods that he should not be eating.  He had a reward trip at school yesterday.  They went ice skating and then to a pizza place for lunch.  We had packed a lunch for him, but the kids kept trying to get him to eat some of the pizza.  He said it was really hard to turn it down, but he did because he really wants to feel better.

He is home today because of some pretty intense pain.  He definitely has a long way to go before he is healed from the damage done over the past years, but hopefully soon he will start feeling better.  He has a wonderful Cub Scout leader who has two children with Celiac Disease that was discovered when they were a little older who is helping me through these early days.  There is SO much to learn about Celiac.  It is definitely not as easy as "just don't eat wheat".  Cross contamination is a huge challenge.  Also, because of the severity of the damage done by the disease, the doctor wants him off of not only foods with Gluten forever, but oats and dairy for at least 6 months.  Look around...that cuts your food choices down a lot!  I am finding more and more recipes for foods made without these items, so that is a plus.

I cannot wait to find out if any of the rest of us have Celiac as well.  I think that either way, we will become a gluten free household.  I just don't know how I would do it otherwise.  The others are not to thrilled about that, so we will have to see how things go.  Spencer is calling.  I better go see what he needs.  Hopefully I will have news to share soon!

Post-streptococcal Glomerulonephritis

As many of you may know, last Sunday night Spencer discovered that he had some blood in his urine.  I wasn't too worried about it because I just figured it was a bad bladder infection or something similar and we would just make a quick trip to the pediatrician in the morning and get him on an antibiotic to clear it up.  Well, once again I've had to ask myself why I keep thinking that these strange  things that pop up in our lives will have a simple answer.

In true Clayton fashion, when we got to the doctor Monday morning we soon learned that this was not going to be a quick trip and probably would not have a quick answer and solution to the issue at hand.  When they tested Spencer's urine, they found no sign of an infection which was good news.  However, they did find that there was indeed a large about of blood in the urine as well as a large amount of protein.  The doctor didn't think it was kidney or bladder stones because Spencer didn't really have much pain.  So obviously we were all a bit concerned.  The doctor explained that what this told us was that the kidney's were not filtering the way they should be.   What we didn't know was why.

So, instead of heading home so that Spencer could enjoy his last day of Fall Break, he and I headed over to the lab to get a bunch of blood work and another urine test done.  After waiting for an hour and a half, we finally got in to have his blood drawn.  Like his mom, poor Spencer has tiny veins and they always have a hard time finding them.  It has only been a couple of months since he had blood drawn the last time and unfortunately he remembered it well.  The silent tears began to fall even before the needle came out.  This time it only took two pokes and a bit of searching for them to get a good vein though and soon we were done.  Spencer was a very brave boy and did a great job of holding his arm still although he was shaking.

We then headed to Iceburg for lunch (Spencer's choice).  Other then a little slip-up with some breaded chicken and a rice krispy treat he was given, this was the last gluten meal he has had.  He is amazing me with how well he is doing with avoiding gluten.  It is definitely a learning process and we all have a way to go, but more on that later.

To make a long story a bit shorter, on Thursday afternoon the call came from the pediatrician with the results from the blood work.  It appears that Spencer has Post-streptococcal glomerulonephritis.  He must have had Strep Throat a week or two ago and since he did not have any symptoms, we didn't know about it and obviously didn't treat it.  Well, the blood test show that he does indeed still have the strep bacteria in his blood and this is most likely what is causing the issues with the kidneys.  He is now on an antibiotic and will have another urine test in a couple of weeks to be sure everything has cleared up.  Never have I been so relieved and thankful to hear that one of my children has Strep! 

Koiliakos

Koiliakos...a word I had not heard of until 2 days ago, but a word that will now become a part of our life.  It means "suffering in the bowels" and you may know the people it refers to better as Celiacs.

If you read my last post, you already know that Spencer was going in for an endoscopy with biopsies earlier this week to check for Celiac Disease.

That morning, he was very nervous about the procedure.  After the nurse, the anesthesiologist and our GI, Dr. McOmber had come in and explained things to him, he was a bit more at ease and did a great job!  They were all fantastic with him.

The procedure took a total of 7 minutes to complete and soon after Dr. McOmber came out to talk with me.  He had some pictures that he had taken and explained that everything looked good until he got to the duodenum, or first part of the small intestines.  He showed me how the color changed a bit at this point and the nice folds that we had seen in the stomach were not there.  He told me that he could not say for sure until we got the biopsy results, but that the damage he could see was what they normally see in a person with Celiac Disease.  I then went back to the waiting room to wait for the nurse to let me know that Spencer was waking up and I could go back with him.

He looks like he's having a good dream doesn't he.  I believe he was.

 

At one point Spencer looked over at me like this and said, "Mom, I went to the moon!"  He later told me more of his adventures of jumping in the craters of the moon and feeling like he was flying.  He also went to Mars.  When I asked him what Mars was like, he said, "it was red."  He said that he went to these places alone.  He also did some time traveling.  He couldn't remember where he went, but he did travel in the Tardis.  Yes, he is a Dr. Who fan.  :)  Of course Spencer doesn't remember any of this.

 So, the wait to find out for sure if we are dealing with true Celiac Disease or not began.  Last night I got a call from Dr. McOmber that ended the waiting and wondering and confirmed that Spencer does indeed have Celiac Disease.  He told me that when Celiac disease is confirmed in a person, they rate the severity of it from 1-3 with 1 being mild and 3 being most severe.  Spencer is a 3B (I'm not sure yet what the B means).  Dr. McOmber said that Spencer is one very tough kid to still be functioning as well as he is with the amount of damage and inflammation that he has.  

We have known for years that something was going on with Spencer.  Because of some things we have tried and promptings from our Heavenly Father, I was 99.999999% sure it was something food related, but I had not been able to pinpoint what it was.  For that I am so thankful to those in the medical field who think outside the box and look at the whole person and not just go by what they expect to see. 

To find out that he has Celiac Disease is discouraging and overwhelming and yet at the same time I am so thrilled to finally know what we are dealing with.  For years he has been in pain, he has not been feeling well and finally we can learn and do whatever we need to in order to help our boy feel better.  For this I am very thankful!