Frequently Asked Questions

I get a lot of questions about Beckett, so I thought I would write a post answering frequently asked questions. I hope it helps clear some things up!  Unfortunately, we still have several un-answered questions. 

1.  What is his diagnosis?
That is a tricky one.  They are calling it atypical cystic fibrosis, at this point.  Some doctors believe that there is something else going on as well, while others are now pretty confident that this is it.  Most of them have settled into this diagnosis as being our primary answer.  It is his main diagnosis at this point, and it is likely the cause of his health problems-- his failure to thrive and extreme digestive issues.  For more about his diagnosis and the round-about way of getting here--to this diagnosis, you can read this Letter to Beckett that I wrote explaining it all to him. The technical diagnosis has changed from the time I wrote the letter, but I think it is still a great summary of what we are dealing with here. In May, we will take him to the geneticist at Texas Children's for a more complete mitochondrial disease work up as well as one other possibility.

2.  What is Cystic Fibrosis (CF)? --here is how I explained it to Beckett--

Cystic Fibrosis is a disease that affects both the lungs and the digestive system. For you, it seems to drastically affect your digestion with less lung involvement. Usually in CF, the mutated gene tells the body to make a defective form of a protein called CFTR. The CFTR is in your lungs, digestive system, sweat glands, and genitourinary system. So this defective CFTR function keeps your body from regulating the way chloride and water move through the systems. Instead of having a normal, thin layer of fluid and mucus, people with CF build up a sticky, thick layer of mucus.

The sticky and thick mucus traps germs in your body. So your body doesn’t fight off germs the way most people’s do. This makes it easier for you to get frequent infections (as you have displayed.) This causes mommy to be extra-cautious in where we go and what we do. We want you to stay healthy. Some research shows that lung problems can develop later in people with residual CFTR (like you). 

3.  And what does it mean to have atypical cystic fibrosis?
Hmmm...That is another toughy. Beckett's genetic testing does not back up a CF diagnosis in the United States thus we have atypical CF.  Actually, over 8% of CF patients do not have positive genetic testing, but they have been diagnosed based on other testing---typcially the sweat test. Beckett has the colon biopsy which says CF, while the genetics do not say CF.  I don't think we actually know what this really means for Beckett.  I don't think the doctors do either.  A lot of this is new research, and we just have to wait and see basically. His local doctors are currently treating him as a CF patient as they feel he presents just like CF and needs to be treated as such.

4.  When did you or doctors first think there was a problem?
When Beckett was 5 days old, we took him to the pediatrician for a quick check up on his jaundice.  He had not gained any weight since we left the hospital, and he was spitting up a lot.  I think this was the very first tiny red flag although the doctor did not alarm us.  He just proceeded cautiously.  We returned a week later for his two week check up...still several ounces under birth weight, and now, he was no longer spitting up-- he was projectile vomiting. a. lot.  So Beckett had his first upper GI to check for pyloric stenosis.  We also discussed feeding and set a date to return for a weight check.  The first of countless "weight checks." During the week between the weight checks, this caring doctor called to check on him at home during the evenings.  We started medicine, and he was quickly in contact with the GI specialists at Texas Children's.  We returned for his weight check, and the sweet baby, despite eating, had lost weight. Not gained. Not maintained. Lost.  A few days later, back again. More weight lost. We are so blessed to have had such a careful and cautious doctor working with us and closely monitoring Beckett.  He quickly got Beckett in for an appointment at Texas Children's and thus began our journey.  The GI saw Beckett, and she admitted him to the hospital on the spot.  If you want to start from the beginning, click here.

5.  What does he eat?  Why?
This can be a sensitive topic, believe it or not.  Beckett eats pureed food, crunchy food like cereals, and Elecare, a prescription formula (not available at the grocery store).  There are few reasons as to why this remains his diet.

One- he got a late start to eating.  He is a bit behind the curve on the feeding progression bc he did not begin to eat until he was 15 months old.  Up until that point he was on formula only because he could not digest anything more. 

Two- he struggles to digest food that has much more texture or complexity to it.  He basically does not digest it and it can make him feel ill.  He has a hard time breaking it down.  We let him try it every now in then to see if it has changed and perhaps his system has matured, but he is still struggling with the digestion end of this. We are working to figure out how to help him digest more table food so he can at least have the opportunity to try it. 

Three- he is still on formula because it is nutritionally complete for him, and it gives him the protein and nutrients that his simple diet lacks. We are hoping to get him off of formula in the near future as we find ways to blendorize more whole foods to balance out his diet. His formula is a prescription amino-acid based formula so that it can be digested easily.

6.  Will he grow out of it?
Again, a difficult question.  I think no one can predict the future.  No one really knows what tomorrow will hold. We don't have guarentees.  So, I can't say that no, he will not grow out of it.  I do believe in prayer, and I do believe that he could be healed.  That being said, the doctors now seem to think it is unlikely.  After all, one doesn't outgrow a disease like cystic fibrosis.  However, I completely think we can keep his symptoms under control and that they could subside, and he can live a very full and healthy life. I think it is very likely that he could be less affected by his symptoms as he gets older.  His body just might require a little extra management than most.

7. Why Cincinnati Children's?
We took Beckett to Cincinnati in December of 2011 because when you have a very specialized problem, you need a very specialized specialist!  Cincinnati Children's has a bowel management program and the only colo-rectal center for children in the country.  It is the place to go if you have extreme bowel probelms.  This was the game changer for Beckett.  This is what brought us to this diagnosis, and this is what got him on the treatment that he needed.  We will always be thankful for what this hospital did for Beckett.

 7.  But he looks so happy, and he is growing now, so isn't he okay?
He is a beautiful child - if I do say so myself :) - with a contagious smile and funny personality.  And while he is still small, he can now pass as "petite" as opposed to "too skinny."  And this is because he is now being treated for his problem.  We have worked very hard to get him to this point. We now know that his body requires digestive enzymes due to the atypical CF.  We know that he needs a surplus of liquids and calories.  We know that he needs intervention to have a bowel movement.  We are able to treat all of these needs, so he looks and seems very healthy.  It means that his chronic illness is under control.  But it is still there, and his body works very very hard because of it.  So, yes, he is okay.  But no, unfortunately, it doesn't mean that it is all over or behind him.  It means he is maintained and we are so thankful for that! He has come so far, and we feel very blessed.  We have come so far since his first birthday and the emotions we felt surrounding it.  Click here to read our feelings when sweet baby turned 1.

Thanks for reading! If you managed to get through this whole post, I really appreciate your willingness to learn more about what is going on with Beckett. Thanks for your prayers.