Meet David

David was born at home with a midwife. This was not unusual for us as we had two of our other children at home with Midwife assistance.  He was 10 lbs 8 oz even though he was 11 days early. The delivery was uncomplicated. The only thing I noticed right away was that David would suck like mad on anything you put in his mouth! He fed every 1 1/2 hours around the clock even though I had plenty of milk. By about 5 weeks he was having what we thought was tummy trouble, I'm sure due to all the excessive feeding. We got the classic "colic" response from our family doctor. So that's how we treated it. Of course the colic medicine I used was super sweet so when I gave it to him he settled down. It was like magic, now I know why, the sugar was bringing his blood sugar up!
 
I took David for his 2 month immunizations right on time and all seemed well. Two days later David had his first seizure. I didn't know that's what it was as I had never seen one before. His eyes went wild, looking all over the place and in different directions from each other and he had a sad/scared look on his face. My instinct was to pull him close to me and nurse him, then he would settle. It happened another time about a week later. Looking back on it I do know that these episodes happened if David's feed was stretched out to 2 1/2 hours instead of his usual 1 1/2 - 2 hours. In all, my guess is that David had 5 seizures over a period of 6 weeks.

At 3 months old David got a cold that turned out to be RSV. He was coughing a lot and looked slightly blue around his mouth. When I called the advise nurse she told me to immediately call 911. I did and the medics checked him out and suggested that we take him to emergency, even though their measurment of his oxygen level was high enough to be safe. Just when they were packing up one of the medics said "Do you mind if I check his blood sugar?", I said no. He said that it's not their normal protocol but he just thought he would have a look. Well, he got a reading of 39. I had a grandmother with type 2 diabetes so I knew this was a low number. We were all like "Wow, that's weird!", but not panicking because we really didn't know anything about babies and blood sugars. So we went to the emergency room and they were running tests to see what David was sick with. They did another blood sugar test (right after a feed) and it was 51. The emergency room doc didn't think that was low for a baby that was sick and he said infections could do that. They did the RSV test and it came back positive so they kept us overnight for observation. David's BSL's weren't checked again while we were there. We were discharged the next morning and went home with the "all clear".

One week later we took our first outing and went shopping. Again David went past his 2 hour feeding mark and he had his worst seizure yet. I ran out to the car with him, nursed him and headed for the ER. Deep down I knew it had to be related to the blood sugar level. I ran into the ER with him, straight to the triage nurse and said "My baby had a seizure and last week he had a very low BSL reading." Because of this information they whisked us straight back and tested his blood sugar which was 36. They tested again 15 minutes later and it was 24. They had me nurse him and immediately got him started on i.v. glucose. They set in motion the process to get us to Children's Seattle and had us transported maintaining him around 55 BSL.

Then began all the blood tests and up and down blood sugar numbers while they were finding the right combination to keep him stable. Diazoxide was started at a low amount and David responded to it but over the next few days they had adjusted to the maximum dose and it was no longer keeping him up. They added the Octreotide at the smallest dose and it worked. They removed him from the Diazoxide cold turkey and his BSL started being unpredictable again. They put him on a "mid range" dose and he stabilized again. So after two weeks, 7 i.v.s and more blood tests that I can count we were sent home with the diagnosis of Persistant Hyperisulinemic Hypoglycemia of Infancy (PHHI also known as Congenital Hyperinsulinism).

His regimen consisted of frequent feeding, and medication by injection every 6 hours. The injection has to be right on time because if he even goes 30 minutes past the time his BSL will go dangerously low. Over a 5 week time period we weaned David off the Diazoxide. Now he has only the injection of Octreotide. We have to watch his BSL very closely and if he were to have two BSL's 60 or below we are instructed to start the Diazoxide again. In Summer, David had his third dose increase of Octreotide to maintain his blood sugar levels.

The medication David was on, Octreotide, has a maximum dose ceiling.  When you reach that level no matter how much more Octreotide you give your child will still be having low blood sugars.  This happened for David in Fall 2007 when David was 10 months old.  (This does not happen to every child on Octreotide, some are able to be on it for years with no problems.)  In Fall, 2007 we packed our bags and went to Children's Hospital Philadelphia.
 
After all of the testing was complete the doctors found that David indeed had a focal lesion on the "neck" portion of his pancreas.  He was scheduled for surgery in Fall, 2007.  The doctors disected the neck and body portion of David's pancreas away from the head portion.  They removed the neck portion, sealed off the head portion and rerouted the body and tail portion into his bowel.  This procedure is called a Roux en Y.  David was in the NICU for 5 days where he recovered quickly and well.  Seven days after surgery David had the fasting test preformed and passed!  He no longer needs medication and today is a happy healthy boy with no lasting effects from his journey.  The scar on David's belly is 3 inches long and we think he will be very proud of it one day! 

This is David's story.

A Personal Note From David's Mom:

I have three personal passions in regard to Hyperinsulinism:

1. Educate every emergency room in the country about acceptable blood sugar levels for babies and young children.
2. Get blood sugar tests in every state to be part of the newborn screening protocol.  (Currently every state varies and the majority of blood sugar tests are preformed on babies born to Mothers with Gestational Diabetes ONLY.)
3. Work with the FDA to get approval for other hospitals (Starting  in TX) to have the ability to do the specialized f-dopa18 Pet scan making it more available to every baby and child that needs it.

Our motto, "Hyperinsulinism hasn't changed us, it's made us stronger!"

Debbie