Meet Terelle

Hello everyone my name is Terelle! I have 1 older sister her name is Terrilynn and she is 7 years old. I was born in August of 2008 I came into this wonderful world weighing 9 lbs 8 ozs.

My mom and the doctors expected me to be big because my mommy had Gestational Diabetes when she was carrying me. When I was born my blood sugar was low which was expected so they rushed me to the NICU for further observation. I spent 7 days with some pretty lovely ladies who doted on me hand and foot at Women and Infants. Once I was able to maintain my BSL they sent me home.I was very excited to go home to be with my big sister, my mom and my dad. While at home I slept and ate on a pretty regular schedule.

At about 7 weeks old I began sleeping through the night with my last feeding being at 12:00am and not again until about 6:00am. My mom was surprised but content that I slept so well. About the third day into me sleeping through the night my mom got up to get my dad's breakfast and lunch ready for work at about 5:30am, she peeked over into my bassinet by the side of her bed to see how I was sleeping and all of a sudden I began convulsing.She picked me up and called my name over and over. I did not respond and my eyes rolled back as I stared blankly. She screamed for my dad and he called 911. I then came to and began crying, we jumped in the car and rushed to the ER.

Upon arrival at Hasbro Children's Hospital they took my BSL and it was 18. They immediately gave me an IV with Dextrose drip and admitted me to the PICU. A doctor from Endocrine came in to speak to my parents and said they were going to run some test. They thought it could just be a simple complication from my moms GD but they wanted to be sure. They tried to keep my BSL up with the Dextrose drip and frequent feedings but I kept crashing to critical low nearing the below 50 mark.

Day 3 in the hospital the put in a pic line and started pumping D50 but I still couldn't maintain my BSL when fasted. They put me on Diazoxide, they told my family it may take a while to see a response and said I could be there much longer. I responded very well and they began lowering my dextrose drip until I was completely off and just on the Diazoxide. I went home 3 days later.

It was hard for my mom and dad because I had to have my sugar checked before every feeding. But I was a trooper. We had to adjust my dosage a little so I wouldn't wake up with low BSL after that I maintained good BSL for the next several months.

In Feb and March of 2009 I started eating baby food and starting having BSL's consistently in the high 200 range. So after reviewing my numbers in late March the Endocrine doctor lowered my dosage of Diazoxide. Everything was good for the first few days but then I began to get cranky and my numbers started coming in lower my mom got worried and took me to the doctors when I began shaking and not sitting up.

The doctor ordered test to be done the next morning My BSL was good upon examination and so were my vitals So I was able to go home.

While mom was getting me ready for bed and to take my BSL I went into a Grand Mal seizure. I began convulsing violently, foaming at the mouth as my eyes rolled back in my head. My mom yelled for my sister to call 911 and my dad ran and got my Glucagon.

My mom injected me as I came out of the seizure. When the ambulance arrived my mom explained my condition, she had just taken my BSL after the Glucagon and it was 76. The EMT had no idea what hyperinsulinism was and when he took my BSL it was 90. He said it was stable and told my mom that I could be transported by car. My mom explained to him that she had just given an emergency med and I need to be rushed immediately. Upon arrival we my mom again explained my condition to the nurse and let her know we were diagnosed at that hospital and admitted there previously. They took my BSL and it was 35 they immediately gave me an Dextrose drip and admitted me to the PICU. They put me back on my original dose of Diazoxide and waited to see how I responded.

Several days went by and I failed the fast so they increased my Diazoxide and tried it again...I failed again. So they could only increase my dose a little more but Endocrine did not think I would respond so they added Octreotide injection 4 times a day. The first shot my BSL increased to 486 so they began to turn down my Dextrose drip, till it was eventually off. That's when Endocrine informed my mom that it would be best for me to be transferred to CHOP as they specialize in treatment for hyperinsulinism. My family was scared for me but knew it was the best place for me to be. So after 2 weeks in the PICU at Hasbro's Children's Hospital a Medi Flight team arrived to take me and my mom to CHOP. My dad and big sister Met us at CHOP. The Med flight team was really fun, they played peek a boo with me.

When we arrived at CHOP they immediately stopped the Octreotide. I went 7 hrs before crashing, but because they had such a hard time drawing the confirmation and I was crying of course my BSL increased so they continued the fast. Well this went on for 5 hours back and forth. So they increased my dosage to the maximum 1.3 ML 3 x a day and I have been maintaining ever since.They fasted me a week later and I went 19 hours. I got the Pet Scan done, it's Diffuse but I'm medically manageable now. So no surgery at this point.We go back to CHOP in July to see Dr. Stanley he was very nice. Hopefully at that time they will have the results of the genetic testing they did because it seems I'm just one of the rare kids with hyperinsulinism who don't have the "traditional" markers they look for. I now have my sugar checked every 4 hours and I'm still the happy chubby baby I've been throughout the whole ordeal. My family is hoping we can raise awareness so that others may not go through as much as we did before be diagnosed. We have a long road ahead of us but we are well prepared thanks to the wonderful teams we have behind us at Hasbro's Children's Hospital and CHOP.

 

A father's Love for his family and advice for dads.

My name is Terry, my son Terelle was diagnosed with hyperinsulinism at 7 weeks of age.That was one of the worse days of my life. As Fathers, husbands and men in general, it is our instinct to want to protect our families from all that may harm them. I felt overwhelmed as they threw out medical term after medical term. I couldn't bear to watch as they continuously poked and prodded my son for this and that test. My wife stood by holding him and just taking it in nodding and occasionally writing something down.

That's when I realized how strong she was, I went over to her and wiped the tears from her eyes and you know she looked up at me and asked if I was okay. Men may be physically stronger then women, but women are built of some strong stuff that helps them to get through, one more minute, one more hour, one more day. A lot of days I didn't know what to do or say and I would just hug her. She told me most days that is what got her through.

I love my family and I hate that my son is afflicted by this very rare but serious disease. So many people see him and say whats wrong he looks perfectly healthy. It's hard he's my son but I know we are getting the best care and with my wife so dedicated to him, our family and raising awareness of this disease I know all will be okay.

One of the hardest thing dealing with is making my 7 year old daughter feel that it's not all about her baby brothers illness. I didn't realize the impact it had on her until one day while I was out with her and my wife was at CHOP with the baby someone asked how the baby was, and my daughter looked up and said I'm okay, I'm doing good. So now we strive even harder to keep her life as "normal" as possible while still dealing with Terelle's hyperinsulinism.

They say behind every strong man there is an even stronger woman. Please remember that although she may be strong, she too needs to have someone to lean on in her time of need.