Home with Answers
I’m so sorry for the delay, but we did return home from CHOP’s Endocrinology care on Thursday very late in the evening. With all the mail, laundry, bills, dishes, and unpacking in front of us... I can’t believe we got it all done before work today. Somewhere in the mix of my “to-do” list was the BLOG update....... but I decided paying the bills might be more important ;)
The last time I updated, Ian has begun his fast at 6:00pm with his final meal. As the night went on, Ian slept peacefully and never woke up for any of the blood sugar sticks. The numbers were as follows:
Meal 6-6:48pm....... glucose 89, ketones 0.7
9:00pm.................... glucose 97, ketones 0.7
12:25am.................... glucose 83, ketones 0.8
3:00am..................... glucose 80, ketones 2.2
6:00am..................... glucose 60 & 59, ketones 4.3
7:00am..................... glucose 46 & 49, ketones 3.1
The ketones are to rise as the glucose levels drop. As a refresher, the ketones are a side effect of fat being broken down to supply energy to the brain. Ideally, ketone tests are negative, but when deprived of glucose in the blood, ketone bodies should appear. Ian’s ketones elevated, but very quickly. Theoretically, a child of Ian’s age and weight should be able to fast safety for about 12 hours. Unfortunately, Ian was only able to fast for about 9 hours before his blood sugar dropped below 70.
This means that Ian has an abbreviated and immature fasting system. It is diagnosed as Ketotic Hypoglycemia. Fortunately, this rules out any risk of high insulin levels and/or hyperinsulinism. Ian’s issues are more centered about a glucose issue as opposed to an insulin issue. This condition is common in tube fed children. Since Ian is eating frequently enough and in steady enough levels, his blood sugar remains very level and constant... as a result, his body has not learn to go longer periods of time without food.
They also ran some other tests:
1) Ammonia levels in the blood: for GI bleeding ***Normal
2) Lactate levels in the blood: for glycogen storage disease ***Normal
3) Cortisol levels in the blood: for vomiting & diarrhea to rule out pituitary gland malfunction ***Normal
4) Insulin-like Growth Factor: for pituitary functioning
5) Insulin-like Growth Factor-Binding Protein 3: these binding proteins act as “carrier proteins” for Insulin-like Growth Factor
We are still waiting for any Insulin-like Growth Hormone tests to return. A positive result on these tests can indicate Glycogen Storage Disease. We will need to wait and see what the tests show. So far, I have not heard anything...... I’m hoping no news is good news.
So far, everything has come back with normal results with exception of the fasting length. Over time, we will be able to improve this time period and lengthen it. It will be more difficult as we work into feeding therapy more intensely because we will have to watch his blood glucose very carefully. The best way for Ian to learn to eat is to allow him to be hungry...... without hunger, he has no desire to eat. However, by skipping meals, Ian’s sugar will fluctuate even more. It also means that whenever Ian is sick, his blood sugar will roller coaster much more. He is more prone to hypoglycemia and we now carry a letter in Ian’s traveling medical record.
We must present this letter when he is in the ER because it affects fluids and IV treatment. Ketotic Hypoglycemia usually resolves by age 7-10 years. Until then, we will be monitoring it as times arise. We have been issued a glucometer to test blood glucose levels at home a couple times a day as needed. Ian doesn’t even flinch or budge when we test at home. It practically feels like nothing and he is so brave. We have the Freestyle Lite which requires the least amount of blood on the market and it is fabulous!
We are to follow up with CHOP Endocrinology in 4-6 months. For the time being, it looks as though it is something that can be managed by us at home, unless emergencies arise. We are happy to be home, but a little reserved about what the future might hold. We have ruled out lots of serious complications, but are still faced with some high maintenance, daily concerns that will pan out in time.
We have also entertained the idea of an feeding therapy inpatient program for more intensive treatment. We will be beginning with Ian’s feeding therapist again in a few weeks and are hoping to make some great strides there. If not, we will be evaluating the inpatient programs.
Hopefully, we can move forward with the new information we have and build a healthy, happy feeding relationship. Thank you all for being so patient while I put this together. Now that Ian is home, there will be no need for daily updates and things can calm down some.... hopefully.... fingers crossed. I can only take so many waves at a time.
Here is a glimpse of what it was like to leave CHOP. We have SO. MUCH. STUFF!!!
We will be meeting with Ian's Surgeon and Dietitian this Wednesday to review all the information and set a new plan in place!