From Rock Hill, South Carolina, USA:
I have a 20-month-old child who has been diagnosed with pancreatic insufficiency. We are still in testing phase to find out what the root cause is but, at this point, we do not know. He is on pancrease 10 MT for the digestion as well as AquADEKS for vitamins. He has never had "normal stools" but, in June of this year, after having a severe case of what we are pretty sure was rotavirus, he started showing cyclical symptoms of the insufficiency. By mid-July he was not showing normal signs of growth and was having full time symptoms, so his pediatrician referred us to a pediatric gastroenterologist. He had an endoscopy/sigmoid and had many biopsies taken and all were normal. Also, he had a blood celiac test done before that and it was normal. He had a sweat chloride test which was normal, but to make sure, he had a genetic test done, also completely normal. He had and ultrasound and an MRI and the MRI showed a normal pancreas.
The next step will be to have a genetic test done for hereditary pancreatitis, which can and usually will involve the endocrine part of the pancreas from what I have read. Since he is so young starting out, I don't know how long it would take for the damage to start in the islets.
Along with the change in bowel symptoms, towards the end of June, he started having days of extreme thirst, drinking all of his drink and all the rest he could get his hands on. On those days, he would pee out of his diaper and need to be changed every one to two hours. I was concerned and since I have had two pregnancies with gestational diabetes I checked his sugars. The fastings are usually between 90 mg/dl [5.0 mmol/L] to 115 mg/dl [6.4 mmol/L], with one as high as 125 mg/dl [6.9 mmol/L]. The post meals are usually in the low 100s mg/dl [5.6 to 6.1 mmol/L], some in the 90s mg/dl [5.0 to 5.5 mmol/L] and some as high as 160s mg/dl [8.9 to 9.3 mmol/L]. I have been doing this on and off since June and when I take them, I try and do a week at a time. I notice the readings on the higher side when he is having the "binge drinking" as his gastroenterologist calls it. I requested an appointment with a pediatric endocrinologist and have one in January. So far, other than my home testing, no one seems concerned or wants to be the one to order anything. With all that is going on with his pancreas, I am worried that these cyclical symptoms will become all the time. I would rather not wait until he is in the hospital. I am caught in the middle of two practices right now, the pediatrician who doesn't want to touch him with a 10 foot pole for anything other then usual illnesses and the gastroenterologist, whose speciality does not cover this.
Is there anything specific I should be thinking about? Should I have the pediatrician get me a referral for a pediatric endocrinologist? Should I even be concerned at all about the endocrine function? Is my mommy intuition in overdrive due to his other issue?
These are extremely complex issues. It sounds like you are doing the correct things, closely observing and checking blood glucose readings. The endocrine pancreas can malfunction when the exocrine pancreas is also not quite right. It could be a mitochondrial disorder, particularly if there are also other nonspecific issues. There are specialists at the big medical schools who can make this diagnosis. I would also add frequent weight measurements to be sure that he is not getting dehydrated. Watch his length and weight measurements and ask questions about pituitary and growth hormone related issues as well as nutrition issues, IGF-1 levels, etc. If the blood glucose readings are persisting and abnormal, then it is possible that he may need insulin, but if they are inconsistent, then treatment with insulin would be extremely difficult. All would depend upon how often normal, how often abnormal. So, you need close contact with the pediatric endocrine team and ask that they consult closely with the gastroenterologist and your general pediatrician as well to know who will do what, who will need to be called and under what circumstances. I would applaud your close surveillance and on-going questions so that you know what you, as parents, need to watch, monitor, do, etc. Time may help to define this more than anything else.
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