6 Responses

  1. ciarra October 21, 2013 at 5:51 am | | Reply

    Hi, my son is almost 4 will be in november :) . He had pull through for short segment HD at 3wks old. By dr mcbride at the mater childrens in brisbane aust. He had been doing well with poops until this year when constipation became a small issue. This last month it has gotten progressively worse. He has been in hospital last week as he was vomiting up bile and not pooping. He has been dosed with laxatives. For the past almost week. His tummy is gurgling very loudly dr assures this is good as his bowel is working. His diet is terrible. After reading this. It shows how important a good diet is for kids with HD. I feel very alone in this battle as not many people understand it. I just found this page today. Im glad I have as an insight into another boy just like mine. :)

  2. Selena Collier January 24, 2014 at 12:25 am | | Reply

    HI there,

    I just came across your page on the HD facebook page. Thanks so much for sharing! I have found your post above very helpful. I also like your approach trying to be as natural and as healthy as possible.

    What is S.Boulardii? We give our 4 year old son (5 in April) a pro-biotic Prodophilus every day. I also have a pre-biotic powder and have a Magnesium supplement that I have used. Is this helpful on a regular basis or only when your son is constipated? Our son has never had issues with constipation. His BM’s tend to be very loose and he still smears several times a day. We have him on a lactose free diet, but he does seem to handle yoghurt and cheese fine. I have noticed that multi-grain bread isn’t good for him and like to now give him a good quality sour dough bread. I noticed you are not giving your son bread. Do you do pasta instead..I’m just thinking of lunch boxes as he starts full time school here in Australia in Feb.

    Thank you again….these posts, pages etc are so helpful…the doctors don’t know or have the first hand experience that the parents on these pages have, it is a wonderful resource to be able to help each other.

    All the best to your little boy.

    Selena Collier

  3. hilary decker July 7, 2014 at 4:18 am | | Reply

    My Daughter was diagnosed with HD last year when she was born. Here is our story and what we went through.


    I now know what I am in for , with the next few years. She is only 1 right now and seems to be having BM just fine. She does not like to eat real food too much right now but I do try to give her mostly fruits and vegetables. Im glad I came across this post !!



  4. EmIly Marshall April 17, 2015 at 5:58 pm | | Reply

    Hi Brenda,
    Your story makes me feel a lot better. My cousin is 2 1/2 will be 3 in july. He was born with HD & still has his illiostomy. His surgeon here in Indiana believes he needs 2 be potty trained before the pull through surgery. I watch him all the time & we r starting the potty training now so it wont be too long. Maybe another year. An emotional rollercoaster 4 all of us!
    thanks Emily Marshall

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