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?
You might try an insulin pump and also have the doctors consider continuous glucose monitoring to see if this allows better glucose trend analysis.
[Editor's comment: When you discuss a pump with your son's endocrinologist, be sure to ask about diluting the insulin, either Humalog or NovoLog. This could allow you to give your son as little as 0.025 unit or.05 unit of undiluted insulin per hour, even less, depending upon the dilution. The amount varies for the different pumps that are available. BH]
Last Updated: Tuesday April 06, 2010 15:10:10
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