Question from Tampa, Florida, USA:

At the age of five and a half months, my son started with retractable diarrhea and C-diff infections and relapses. He was put on TPN (total parenteral nutrition) for nutrition where he started, at eight and a half months, with high blood sugars. He was hospitalized at four Florida hospitals and was seen by numerous endocrinologists then he was finally airlifted to Children�s Hospital of Philadelphia. He was finally diagnosed with an IPEX-like syndrome. Currently, we have been in Philadelphia for five months and the gastrology department has been able to get my now 20-month-old son off TPN and on NG (nasogastric) feeds. The problem is that he has uncontrollable blood sugars. He cannot take Lantus because he stacks it and Regular insulin is too strong for him. He drops 200 to 250 mg/dl [11.1 to 13.9 mmol/L] on 0.5 units alone. He is currently on NPH, which has worked the best so far, but daily he still has highs and lows. We are trying to get him off continuous feeds but it is so hard due to his dropping even 10 to 12 hours without NPH. Many doctors have confessed that they are stumped by my son’s condition. We realize that children that are labeled IPEX-like are difficult, but do you have anything to recommend?