The month of September and October were eventful thus far. Jaylen missed six days of school total in the month of September. Luckily, I have a job that allows me to drop everything and look after our little buddy. He had two pretty bad episodes that lasted around three days each. The second episode was followed by a full 24 hours of fever and red spots on tonsils. We closed out the month of September with a 6 month check up with the specialist in Milwaukee, WI, Dr. Werlin. The doctor ran some blood work, ordered an MRCP, and an elastase test for pancreatic function on the 29th. The only thing new that was brought up was a trial run of Antox, a high dose of antioxidant vitamin blend to try to prevent frequency of attacks. There is no evidence of Antox working for sure, but we have since purchased a supply from a European pharmacy because it is unavailable in the US. JJ will need to be on Antox for 3-4 months before determining if it helps at all. JJ left 3 vials of blood for tests to be done. Not even a flinch any more with blood draws-tough guy! Closed out our Milwaukee trip with a visit to Buffalo Wild Wings :)
Elastase test was dropped off on October 3rd with Rockford Health Systems. It is always fun handing a nurse urine and/or stool in this case. Flu shots were done October 7th with normal pediatrician. Love- love- love our Dr. Davis! A few vials of blood were left with a new genetic doctor at Rockford Health Systems also on October 7th. Genetic tests are super hard to clear with insurance by the way. Most insurance companies do not find them reasonable or medically sound?? Whatever. Some how the new doctor got insurance to pay something and we are on the road to figuring out if our other two children have the SPINK1 genetic mutations, depletions, or duplications. MRCP was completed on October 10th in New Berlin, WI. Jaylen does great laying super still in that machine. Man he is a trooper with all these pokes and prods!
Here's an FYI... Our pediatrician in Rockford, IL informed me that Jaylen is his very first case of pediatric acute recurrent pancreatitis in 29 years of being a doctor. This to me points out that he is a VERY special little boy-even more special than we had imagined!
All these tests yielded some results. The elastase test, which is a test to measure the pancreatic function, came back a bit disappointing. Not going to lie, it is hard to accept or wrap my brain around. From his last test done in January 2015, his pancreatic function went from "Normal" to "Moderate to Slight Pancreatic Insufficiency." The acute attacks on his pancreas have depleted some of the ability to do it's normal exocrine job. The MRCP showed minimal edema (swelling) of the pancreas and dilation of the pancreatic duct, both pretty normal in pancreatitis patients. His last attack that we are aware of was on September 17th so that could have been left over from that attack. That is the doc's hypothesis. Specialist does however, want to make sure that this edema and dilation are not due to chronic pancreatitis. Definition of chronic pancreatitis--irreversible changes that cause potential pain and/or permanent loss of function in pancreas. This means another test in November. This test will also determine if JJ will have to be put on digestive enzyme replacements to be taken at every meal.
In the meantime I suppose.... let's all be happy about these MRCP results:
Spleen-NORMAL, Lower Thorax-NORMAL, Ureters-NORMAL, Adrenal Glands-NORMAL, Kidneys-NORMAL, Bowel-NORMAL, Peritoneal Cavity-No Free Fluid, Vasculature-NORMAL, Lymph Nodes-NORMAL, Abdominal Wall-NORMAL, Bony Structures-NORMAL, Gallbladder-NORMAL, Liver-NORMAL
11 year old boy-NORMAL
Stupid Pancreas-why do you have to be so ABNORMAL?!?!
As always, pray for our JJ.
I Love You #1 more than anything! Mom