Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Jay, I know NOTHING about this. However, I remember learning at one of my daughter's hospitalizations that there is some Crohn's GURU at Cedar Sinai hospital -- the girl in the room next to has Crohn's, and lives in Phoenix. When the girl had an attack, her mom drove her to the AIRPORT instead of the ER, and flew the hour to LA and took her right to this doctor, who is actually their treating doctor. The mom commented that they did a lot of research about the best Crohn's person on the west coast. Maybe I could find out who it is and get her email address??? Jenn > > > Hey all, > > Mathieu had another bone age done. When the results came back it said that > he had growth arrest lines. Basically his bones have visible lines that > show when growth has stopped and started at various stages since he was 5 > months old, and is a major sign of disease, malnourishemnet (like in other > countries or can be malabsorption) and chil neglect. He is defintely not > neglected, but the disease and malabsorption can be a combo for his illness. > > My doc has stated strong concern about this. We know he eats very well, > because he has been picking up weight and is finally on the 3-5 % for weight > the past two months, but his height is flatlining again and has been well > under the 3% since he was 5 months. I have a detailed message from a few > months back, and basically we have been everywhere to rule out many > illnesses. > > The think this is Crohn's and have been back and forth on this diagnosis for > sometime. I am looking for anyone else whose child has had these lines....I > looked it up online but most of it is in doc term, and can be difficult to > read. > > Thanks all, they are doing a colonoscopy again in March to see if there is > damged in his small intestine. He is not RS< but you all have great advice, > and half of it I do for Mathieu because he burn his food so quickly, and > some of it doesn't seem to be pocessed.. > > Jay > > Mom to > > almost 6 > > Mathieu 2 on the 3rd of Jan!!!!! (30 3/4 inches 22 pounds) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Oh, yes, actually I was just on the phone today with another friend finding out about that doc at cedar sanai right? I am not going to say her name due to rules on the listserv, but yes I am on track with that program right now and I will call her tomorrow to set it up. I need to drop our inurance to a PPO to go and I am going to pick up a supplement from the the Military Officers Association offers (awesome supplement plan) us to make sure he gets the best care from now on. Part of our problem I think was that the docs look at our Insurance (Tricare Prime, HMO) and see that they won't get the max payment out of our insurance. It is contracted thru the government to pay what the military Health care will cover....so they get stiffed with the bill since they can't charge us the rest. I hate to say that, but I think it is true, especially with his growth problem and yet they still say " oh it's fine, lets just wait and see " He was not born abnormally small and was a completely normal infant, I feel like yelling, " HELP HIM " !!! We are about an hour and a half away, and that is what my husband and I are going to do...I have been in the dark and patient, (and I have raised my voice to keep the docs moving along) but for the most part I am a very understanding patient mom...Perhaps because I have worked in the Pediatric field myself at a children's hospital and I know it can take a while to get a definite diagnosis, BUT I am soo frustrated right now to know that my son actually shows the proof of delayed growth on his bones because of the lack of nutrients he is abosrbing. Thanks for your support, and I will keep you all posted. Jay Mom to almost 6 Mathieu 2 30 3/4 inches and 22 pounds Jay, I know NOTHING about this. However, I remember learning at one of my daughter's hospitalizations that there is some Crohn's GURU at Cedar Sinai hospital -- the girl in the room next to has Crohn's, and lives in Phoenix. When the girl had an attack, her mom drove her to the AIRPORT instead of the ER, and flew the hour to LA and took her right to this doctor, who is actually their treating doctor. The mom commented that they did a lot of research about the best Crohn's person on the west coast. Maybe I could find out who it is and get her email address??? Jenn > > > Hey all, > > Mathieu had another bone age done. When the results came back it said that > he had growth arrest lines. Basically his bones have visible lines that > show when growth has stopped and started at various stages since he was 5 > months old, and is a major sign of disease, malnourishemnet (like in other > countries or can be malabsorption) and chil neglect. He is defintely not > neglected, but the disease and malabsorption can be a combo for his illness. > > My doc has stated strong concern about this. We know he eats very well, > because he has been picking up weight and is finally on the 3-5 % for weight > the past two months, but his height is flatlining again and has been well > under the 3% since he was 5 months. I have a detailed message from a few > months back, and basically we have been everywhere to rule out many > illnesses. > > The think this is Crohn's and have been back and forth on this diagnosis for > sometime. I am looking for anyone else whose child has had these lines....I > looked it up online but most of it is in doc term, and can be difficult to > read. > > Thanks all, they are doing a colonoscopy again in March to see if there is > damged in his small intestine. He is not RS< but you all have great advice, > and half of it I do for Mathieu because he burn his food so quickly, and > some of it doesn't seem to be pocessed.. > > Jay > > Mom to > > almost 6 > > Mathieu 2 on the 3rd of Jan!!!!! (30 3/4 inches 22 pounds) ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 When you said you knew a mom that had the girl with Crohn's while a stay in the hospital do you still have contact with them???? That would be great to talk to her about her experience at Sinai as well.....You can give her my email address so I can contact her...If she is willing?? Thanks so much, Jenn that was kind of you to offer information, I meant to add that in the prior email and got on a tangent Jay jbrethen@... Jay, I know NOTHING about this. However, I remember learning at one of my daughter's hospitalizations that there is some Crohn's GURU at Cedar Sinai hospital -- the girl in the room next to has Crohn's, and lives in Phoenix. When the girl had an attack, her mom drove her to the AIRPORT instead of the ER, and flew the hour to LA and took her right to this doctor, who is actually their treating doctor. The mom commented that they did a lot of research about the best Crohn's person on the west coast. Maybe I could find out who it is and get her email address??? Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 No, I didn't stay in contact, and didn't write down her name. Bummer. The girl was about 14 years old, and the mom and I were " hanging in the hallway " for a week together. Our girls didn't have a lot in common, obviously, but for parents, a chronically ill child is the same. The girl had gone through a lot, but was amazing - playing sports and a cheerleader, despite great abdominal pain. I wish you good luck - I remember that the Crohn's lady doctor talked to me late one night when I was freaking out about 's sepsis. Very good bedside manner. Jenn > When you said you knew a mom that had the girl with Crohn's while a stay in > the hospital do you still have contact with them???? That would be great > to talk to her about her experience at Sinai as well.....You can give her my > email address so I can contact her...If she is willing?? > > Thanks so much, Jenn that was kind of you to offer information, I meant to > add that in the prior email and got on a tangent > > Jay jbrethen@s... > > > > > > > Jay, I know NOTHING about this. However, I remember learning at one > of my daughter's hospitalizations that there is some Crohn's GURU at > Cedar Sinai hospital -- the girl in the room next to has > Crohn's, and lives in Phoenix. When the girl had an attack, her mom > drove her to the AIRPORT instead of the ER, and flew the hour to LA > and took her right to this doctor, who is actually their treating > doctor. The mom commented that they did a lot of research about the > best Crohn's person on the west coast. Maybe I could find out who > it is and get her email address??? Jenn > > > > Quote Link to comment Share on other sites More sharing options...
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