Pancreatitis. The Devil.

I am scared for you JJ.
Thursday and Friday were rough. It is excruciating to watch helplessly and not be able to do anything for you.  I beg and plead with God every day to heal your pancreas. I would trade places in a heartbeat.
I love you JJ.
Mom

August 2015

Long time. Many Appointments.  SPINK 1 mutation with nothing else.  Certain marinara sauces cause a pancreatitis flare (mainly carry-outs), along with heavy dairy (cheeses etc), and viral infections.  Pediatric pancreatitis is one of the most painful things to see your child go through. Milwaukee Children's Hospital said there is nothing wrong with his immune system, no Cystic Fibrosis mutations, and no other hereditary mutations (other than SPINK 1).  We are stuck. Lucky to NOT have a huge flare up since beginning of March 2015.  Watching the clenching, vomiting, and pain that JJ goes through is nothing I look forward to.

Today is JJ's 10th Bday.  I am thankful for him in general, but am super thankful that he has had no pain at all today. Thank you Lord! Even though he has had Buffalo Wild Wings and strawberry shortcake--lol! I look at him and see many good things:  passion for life, football, baseball, God, education, and such a will to please.  It is my prayer that he continues and doesn't let pediatric pancreatitis get in his way.

I wish I could take it from you Jaylen... Mom

September 1st Labor Day

Everyone is getting ready to have a late lunch grill out for Labor Day at a family friend's house. Little did we know Jay's pancreas was not going to have that.

Normal crazy morning, trying to get three kiddos out the door, to the store, and off to a picnic.  I believe the sitting down to standing up position really gets Jay's pancreas angry. He comes up from downstairs playing his Xbox and immediately the cramping under his bellybutton starts. Not a lot of pain this time but enough to bother our Jay.  He is such a trooper.  Gets the little garbage, doesn't want to go to the doctor, and still wants to go to the picnic.  Away we go to the store.  Sitting in the back of the cart with a garbage can. Picture that.  He is going strong, wants these kinds of chips, this kind of drink.  In the back of my mind, I'm thinking, they said it could have been a virus in July that caused his pancreatitis. Please let it be that, please, please, please.  We whiz through that grocery store like race cars.  I have put in a call to the pediatric doc on call. Jay looks real pale when we load into the van. Doc calls when we were headed to the picnic location. I describe what Jay is relaying to me about the pain and pain location and I also explain Jay's previous experience(s) with pancreatitis. The doc in turn tells me the location of his pain seems to be more the location of constipation.  Keep him hydrated and start the Miralax.  Fab. Got it. Started that right away. Almost to picnic, and here comes the puke. You do not puke from being constipated! Needless to say, after dad got done golfing and arrived at destination, I took our little boy home.

We got home, and he napped peacefully.  What is going on? Seriously.

The second call to the doctor said we can take him to the ER if things get worse.  He seemed to have bounced back pretty quickly so we opted out. The following day, brought an Amylase and Lipase blood draw.  Confirmation...

Pancreatitis. Again.  

July 2014 What's wrong with Jay?

July 2014 We got to the emergency room and it was a very short wait because the walk in clinic doc called them to warn them we were coming.  They did an x-ray right away and took some blood.  ER doc decided there was some stool in x-ray and they then proceeded to give my son an enema while he is keeled over throwing up and screaming in pain.  The child is now on the toilet while throwing up.  Next, let's drink this nasty liquid so we can do a CT scan.  Throw up some more, cry some more. Hurts my heart- I can't even imagine what my poor son was feeling now that we know what was wrong with him. Doc comes in to say they found that he has mesenteric lymphadenitis which pretty much says he has swollen lymph nodes in or around his stomach.  This then says he is fighting off something (duh).  What that something is, they don't know yet. Thank goodness the blood results came shortly after they found lymph nodes.  Elevated amylase and lipase. If my memory is correct, his lipase was around 2300 (no recollection of amylase).  These are the enzymes that elevate when you have inflammation of the pancreas. My child has pancreatitis? How? What? And the most important of these questions is WHY?   

Your world stops when you have been told that your child needs to be admitted to the hospital. When he was admitted, he was given iv pain meds, anti-nausea meds, and saline.  Twelve hours of sleep and he woke up a new boy.  The gastro doc ordered some genetic tests because this is a very rare occurrence in a child. I made it pretty clear that this sickness had been going on over two years but it went mis-diagnosed or ignored (by mom-big F on report card there too). Jay was a trooper holding still for his very first MRCP which took close to one hour to complete.  That is a long time for an 8 year old to hold still. Poked and prodded for five days, four nights. Jay loved his friends visiting. I loved them visiting too! It did make the time go by a little faster.  They let him go home after a one day fasting, one or two day clear liquid diet, and one day solid food diet. Discharge papers diagnosis included: abdominal pain, esp around belly button, constipation, abnormal CT scan, vomiting, dehydration, increased serum lipase level, ad acute inflammation of the pancreas.  Discharge instructions were following up with pediatric gastro doc and low fat diet. Yes, low fat diet for an eight year old. mmm hmmm...right.

*Lots of details are vague at this point for these first couple entries.  As most of my friends and family know I suffer from brain loss--I mean memory loss lol!  Nan*     

Introducing........Acute Recurring Pediatric Pancreatitis

So for two years one of our children got sick more frequently than the other two.  As parents you dismiss certain puking episodes as the flu or something that he ate or a food intolerance.  It did start to worry us when the flu wouldn't ever hit any other people in our family.  After several visits to the general pediatrician, and an ER visit, we visited a pediatric gastro doc.  We were thinking, finally, some answers. Boy were we wrong...

April 2014 visit and diagnosis was a combination of mild constipation and acid re-flux.  Prev-acid and Mira-lax prescriptions and away we go.

July 2014 Almost wrapping up baseball and softball season, my son is hunched over screaming in pain. The wonderful parent that I am, I really thought that this was a small ploy to get out of football camp we had signed him up for. The child is in love with sports but maybe he is scared to start or something. Tough love, we paid for the camp, now get up and go. Asking an eight year old if he would rather go see the doctor or go to camp and he chooses the doctor?! There is something wrong there. When I had pulled myself together I had noticed he had balled himself up on the floor, tears streaming from his eyes, mumbling something.  Big red flags are thrown up.  This is not right. What's going on? I carried him to the car freaking out on my daughters to hurry hurry hurry (another proud mom moment).  To the walk in we went.  Thank goodness after an xray, the walk in clinic doctor knew his stuff and called the ER and sent us right away. Words can't describe the amount of guilt I was feeling as a mom. Tough love. Bull crap Nance, now look. Jaundice set in, rolling of the eyes, and now vomiting in the car on the way to the ER. There is no chance that this is the flu, something he ate, or a food intolerance....