A little History

From birth, my son was small. Exclusively breast fed until 9 months, every time I tried to feed him solid foods, he broke out in a rash. Occassionally, he would throw up for no reason. His size concerned me, as all my other children grew very well. He gained about 1/z oz per day his first 6 months. At his 9 month check up, I asked the doctor where he was on the growth chart and with a double take, she asked me to reweigh him. My hunch was correct...he had not gained any weight since he was 6 months old. At 14.5 pounds, he was small and not keeping a growth curve of his own. He had gone from the 5th percentile to off the charts.

He started seeing a pedetric GI specialist. We put him on a high calorie diet, and did a bunch of blood work. No matter what I did, his symtomps remained the same or got worse. At 5 months, he had started having breath-holding spells, and at 9 months, had his first seizure. This WAS NOT related to his growth problems, and to this date...none of the specialists or doctors he has seem claim it is. However, all the focus went on the neurelogical aspect of my son. He saw several more specialists, all the while my questions about his frequent bowel movements and distentended stomach were ignored or given little weight.

At 12 months, he was hospitilized for neurological tests. He caught a stomache virus (we thought) from the children's wing. After celebrating his birthday in the hospital, he took his first oral dose of siezure medication which he promptly vomited. Two days after discharge, he was nursing every 20 minutes...and I finally gave him infant formula to help hydrate him. Though many of his symptoms remained unchanged at this point, he actually started gaining weight again.

When was 14 months old, he began regularly taking oral medications to control his seizures. Unknown to any of us, this medication is what eventually put him into a state of dehydration that prompted a small bowel biopsy. Though he wasn't hospitilized (I only credit this miracle to the constant prayers and my instincts to limit his solid food in take), he remained close to 16 pounds.

At this time, he had the following symptoms:

• failure to thrive
• weight loss
• occassional vomiting
• abdominal distention
• bloating
• irritability (he was still nursing every two hours at night)
• severe diaper rash
• foul smelling bowel movements (4-8 per day)

At 19 months old, the diagnosis of Sucrase-Isolmaltase Deficiency came with great relief! That was 15 months ago. I will continue the story in another post.