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About janelyb

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    Northern CA
  1. When are you going? I will be there in early August for a conference in the french quarter with my son whom has the same intollerences as your family and so do I. I am very nervious about being there and I haven't come across too many places we will safely be able to eat at. There is 1 pizza place I am eager to try because they are organic and have gluten-free and vegan options. It is calledNaked Pizza. Bubba Gump seafood restraunt I contacted and they said they can accomidate for gluten-free. I wanted to try that deef fried seafood but I see you mentioned they were closed for summer, that sucks. I read somewhere that cafe beget had something but another friend who is a localsaid she would not trust it because there is language barriers there and they may give you the wrong one. Please let me know when you are going so we can pass info along.
  2. Happy birthday and may God bless you today!

  3. I'll be staying at the doubletree hotel in late July 16625 Swingley Ridge Rd Chesterfield, MO 63017-1715 Is there any safe food places near by...walking distance only please I will not have a car.
  4. http://pedia-lax.com/ Just curious if these products are gluten-free? I am refering to the oral ones not the enemas or suppositories
  5. Let me know if anyone wants the forms, they sent it to me via email very quickly within 24 hrs of my requesting them and I would be happy to fwd them onto someone else or copy and paste them here at least the refference sheets.
  6. thank you so much I came on today specifically looking for Disney world stuff and already have gotten some great tips. I found this during my online search..... http://www.cambrookefoods.com/included/doc...eyTravelers.pdf It seems like it would be helpful...especially to my family with multiple food allergies.
  7. Basically we have 2 more surgeries. The next one in about 2-3 months will be a pullthrough. This means they will reconnect the healthy colon to the rectum, then let it rest. The finaly surgery about 2-3 months later is the closure of the colostomy. And then things should work pretty close to normal for bms. For those curious what Hirschsprungs is here is a great description: Hirschsprung's disease is a rare congenital disorder that causes an obstruction (or blockage) of the intestine. This prevents normal bowel movements. You might hear doctors refer to this condition with other names, such as congenital megacolon or megarectum, aganglionic megacolon, Hirschsprung-Galant infantilism, Mya's disease, Ruysch's disease, or colonic aganglionosis. Children with Hirschprung's disease do not have certain nerve cells, called ganglia, in the walls of their bowels (another word for intestines). These nerve cells help relax the bowel (or intestinal) wall to allow fecal matter to move through the colon. The absence of ganglia is due to a genetic problem. When a child has Hirschsprung's disease, his colon stays contracted, so that bowel contents build up behind the blockage. The condition usually affects the last 1
  8. Things have progressively went downhill for my little 4.5 yr son the past few months. A few days after xmas we did an endoscopy,rectal suction biopsy, etc....everything was looking good and they didn't see anything wrong. Well after that he rapidlly went downhill. Not eatting,sleeping, no poop, vomitting,ab destention. Finally 1/14 we did a barium enema....lab tech sugested Hirschsprungs but I told him the biopsy said no. That night was the worse...his ab was so distented I thought he was gonna pop and he was vommiting and no poop. We were told to go to the ER...after 12 hrs he was admitted to the children's unit sent to a surgeon. After some rectal irrigations,xrays and a few more full tissue biospies...Hirschsprungs was confirmed. He had surgery last week 1/24 with 25% of his colon removed and a colostomy in place. We have 2 more surgies to go in the future. That is basically the short version of the story...... www.myspecialone.blogspot.com for the full verson Anyways that is where we are now, finally home after 2 weeks in the children's unit of the hospital. If anyone knows someone with Hirschsprungs please contact me. And if anyone knows if there is some kind of link between cleiac or gulten intollerence to Hirschsprungs please contact me too. Janel
  9. I am just curious if there is a link between Hirschsprungs and gluten intollerence or celiac? my 4 yr was just dx with Hirschsprungs. But a year ago he tested inconclusive for celiac on a blood test. At that time we did not do the biopsy to confirm (I wish we had). We decided to remove gluten. He started to improved and then we removed casein and later soy. Still improving but then went downhill and a few months later we got the Hirschsprungs dx. Our GI seems to think he is not gluten intollerent or celiac at all and wants us to go back to gluten once all the surgeries are over from the Hirschsprungs. I am hesitant because I did some genetic testing with enterolab and he has a double gene that predisposes you to gluten intollerence. Any insight would be helpful. Janel
  10. No complaining of pain but then again he has a high tollerence to his tummy pain. And yes there is some bloating as usual.
  11. Ok my 4 yr old had his colonoscopy on Thursday and eventhough he did a clean out and was full of poop. GI cleared his colon and now he still hasn't had a bowel movement two days later and he is also on Miralax too. Is this normal?
  12. I always buy their hamsteaks and do ok...I don't see any gluten in the label but I have not verified it with the company.
  13. Those of you who have done this for a clean out have you ever used Magnesium citrate powder instead of the nasty liquid? Since my 4 yr old son needs to be cleaned out for his procedures next week I wanted to try this instead. I found some at Vitamin Shoppe and called the company and it seems like it should work. I bought this brand....Natural Vitality Natural Calm (Lame Advertisement). I would do the liquid but my son doesn't take meds well at all and to drink 4 ozs will probably take us 2+ days so it just won't work. This is why last time the GI doc admitted him when he had the blockage.... . Ok how important is it to be cleaned out when one is on Miralax daily and basically already is having loose stools? Janel
  14. Impromptu Parents Meet Up Date: Monday December 17, 2007 Time: 6:30 pm - ??? Location: Starbucks 5070 Rocklin Road Rocklin, CA 95677 How about we all meet at the STARBUCKS across the street from Sierra College on the corner of Sierra College Blvd. and Rocklin Road at 6:30 p.m. on Monday, December 17th. This Starbucks is mostly for the college crowd and is pretty empty in the evenings, and even more so on the 17th because Sierra is out for Break. So, we should have ample room for however many of us show up. FYI- this meeting is for parents who have celiac kids only....please get a sitter for the kids. We will have kid activities coming 2008.
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