Henry's Story ~ Unclassified FOD

Henry is our first child and was born after a rough pregnancy. I had no trouble getting pregnant, but had spotting/bleeding throughout the first trimester and high blood pressure and edema starting at the beginning of the second trimester. I went into labor at 28 weeks, but labor was stopped and I was hospitalized over night. I was on bed rest for the remainder of my pregnancy for either pre-term labor or high blood pressure. Finally at 36 weeks, my water broke.

The OB was very excited as he was planning on inducing early. My labor was long, but relatively easy and we were so excited to welcome Henry into the world on February 6, 1998. He was 6lbs7oz – a great weight for a 36-weeker. He was very alert, but was uninterested in eating. We worked hard on breastfeeding for 3 months. Henry had one blue spell in the hospital and seemed to be “growing” little round band-aids. I think his blood sugar was low or borderline, but I was told nothing.

We went home after 2 days and Henry continued to struggle with eating. Feeding him became my 24-hr/day job. I was determined to breastfeed so I fed him, pumped, and then bottle-fed every three hours. It was exhausting, but I was so happy to have this baby!

At 3 weeks, the Pedi Dr decided that he was failing to thrive and hospitalized him. There the GI doc decided that I wasn’t trying hard enough to feed him and that he would be fine it I just breastfed. After all, she breastfed and her kids were fine!

Henry went into a coma-like state and my husband came in and squeezed formula into his mouth until he came around. That doctor eventually was asked to leave the hospital. We went home and continued feeding Henry as often as possible.

At 6 weeks, he stopped breathing and he was admitted for apnea. They came to the conclusion that he had severe reflux (that was a correct diagnosis). He came home on new meds and new formula and was somewhat better. At 3 months, Henry started screaming and would not stop. We went back to the ER. They decided that there must something else wrong. The next day we saw a GI doctor that diagnosed Henry with an FOD. He was put on a fat free diet and did much better. At 6 months we started checking blood sugars and he started Carnitor®. He had low muscle tone, but once he started taking Carnitor® his muscle tone normalized. He thrived on the Carnitor® and still does.

Over the years, Henry has been through quite a bit. His development has been excellent and at five he is reading and learning to ride a bike! He is very talkative and friendly. He has food allergies and mild asthma that complicate his diet. His blood sugar also fluctuates greatly. He is on a low fat diet and cannot eat beef, pork, or dairy products. He has some problems now with sugars especially from fruit. Lately he has had a lot of highs and we are in the process of having that evaluated. He has had a few seizure-like episodes and one that lasted about 30 minutes. He had presumed pancreatic insufficiency as a toddler and was treated with Creon5. We have continued to struggle with Henry’s lack of appetite. He is now 40 lbs and 42 inches and although a little small for his age he fits in well with his classmates. Henry has behavior problems when he is “out of whack,” but is wonderful when he is feeling well. He has been through two surgeries and several viruses and did fine on the IVD10.

We live in Houston, TX but Henry sees Dr Vockley at Mayo for his metabolic Dr. We have been very pleased with the care Henry receives there. It is well worth the commute. We have 2 wonderful pediatricians here in Houston who consult with Dr Vockley. He is wonderful at communicating information about Henry’s care with us, as well as with his Drs here in Texas.

Henry will be in a regular kindergarten class in the fall. We are expecting our second child in January of 2004 so we have a lot of changes coming up! Henry is excited about having a sibling and promises to help out with the baby. We are lucky that Henry has done as well as he has. He is our little miracle.

Henry's birthday was on Friday, Feb 6, 2004 and he is now 6 yrs old! I cannot believe how fast those years went by. He is doing well but we let him eat whatever he wanted for his birthday and now he is a little out of whack. He seems better today as we are back on the regular diet. Henry was one of 2 out of 60 kindergarteners that were accepted into the gifted and talented program at his school. I am very proud of him! He has tested for acceptance into several schools for gifted children. He had some blood sugar problems during one test but the school was aware of it and said it would not count against him. Medically he is rolling along as usual.

Sam was born on Dec 17, 2003. He was 5 weeks early due to my preeclampsia. He was 6lbs10oz and had APGARS of 8 and 9. He had no breathing problems, normal blood sugars and roomed in with me throughout our stay. The doctor ordered blood work for metabolic testing and we had expanded newborn screening done. His testing came back NEGATIVE!!! He has a little reflux and is a slow weight gainer but both are explained by his prematurity. He is a doll and loves to eat! So different from Henry ~ he show no signs of blood sugar problems or an FOD.

I am back at work parttime (I am a Speech Pathologist) and I am taking Sam with me. I am doing private practice at a school for very special children with multiple challenges and it is going great. It is a very special school and I feel honored to be a part of it. Henry loves being a big brother and is a big help with "his" baby. Sam adores his big brother! We have been blessed once again!