June 8, 2009

I just don't get it

Well for those of you who know me and my son, knows that Dylan is constantly sick with a stomach virus....The symptoms come and go sometimes as often as every few weeks. I know since Dylan has had 3 operations on his colon and does not have a normal size colon that he is more skeptical to catching stomach viruses....but sometimes your left wondering why so often and if theres another reason behind it all. Last year when Dylan would get sick he would throw up a few times and then just be sick for approximately 24 hours with diarreaha and wouldnt eat well. Now after another surgery, these episodes are beginning to last longer each time they occur. Its just a mystery to me, maybe something I will never fully understand...maybe this is just gonna be the way things are gonna be for him. I mean I know stomach bugs are something every kid has to deal with, but after seeing your kid be put to sleep probably 10 times and 3 of those times being a major surgery, you just hate to see them endure more pain, stress, and illness....its heartbreaking....


  1. We had the same experiences (recurring stomach bugs) with our HD daughter until about Age 6. I later learned it was probably low-grade enterocolitis (HEC = Hirschsprungs-related Enterocolitis). Are you familiar with HEC? Many people are assisted with this by a drug called Flagyl, and there's been discussion on our support group of some certain patients being helped with drugs called Gastrocrom or Cromolyn. These of course should be discussed fully with your doctor after you research what they are, for consideration in your personal situation. I am part of a concerned HD parent website & support group at www.hirschsprungs.info .

    Also, a great informative HD website is the Johns Hopkins HD Study website:

    Lori, mom of HD daughter, 23 yrs.

  2. Thanks Lori, I am familiar with the group you mentioned. Also familiar with the flagyl. Thanks for your words of encouragment...I hope in fact that Dylans situation will get better as he grows and gets older...seems as though alot of kids do have problems until their at least 4 or 5, so we are just hanging in there and hoping for the best....

  3. Hi, My boy is nearly 2 and had his pull-through 3 months ago. I give him a milky pro-biotic drink every day as my consultant suggested and touch-wood! so far he's ok.