Told my son may have chrons, to find out his bowels dont work, PLEASE HELP ME!!!!!!!!!!!!

When my son was 3 weeks old I was told he was constipated and i knew something else was wrong. He was sent for xrays and they found out he had Pyloric Stenosis. It was corrected at 4 weeks of age, and he never got any better. Every day since, he didnt want to eat, vomitted all the time and screamed and cried everyday all day. I was told he had gastral reflux disease and an umbilical hernia. I have had over 200 visits to the doc office and Emergency rooms since he was born...........he was hospitalized 2 times for mouth ulcers, has frequent urinary tract infections, vomits all the time, spikes weird fevers and has ear infections. 2 months ago once again I took him to the local E.R. because of him crying that his tummy hurts, and the E.R. doc says considering all the visits you made to all sorts of doctors and E.R.'s I am thinking he may have crohns disease.......told me to contact his pediatrician and when I did, I went to his office once again he says he is constipated and sends him away with peglite! 75mls a day for 3 months.

Now my 3 year old has been in pain for almost 4 years, now walks in circles saying "ow my tummy hurts" over and over again. I take him 3 hours away to a childrens teaching hospital to find out his bowels dont even work!!!!!!  Yes they dont even work, he has been to 200 or more docs and i find out now!!!!!!!!!!!!!!!!   So, I call his ped to refer him to a doc I was told to get him refered to, a pediactric gastronologist. I get a letter today with an appointment for February 23rd, 2010. So my son has to deal with this for another year drinking gatorade and eating chilcken noodle soup for the salt???????????????    Please can you tell me what I can do???????????  I was told by 2 nurses that you have to have functioning bowels to survive, please be honest with me, is there a chance that my son wont make it till then????????? PLEASE I AM DESPERATE, WHAT WOULD YOU DO IF THIS WAS YOUR CHILD?????

[KoalaRoo]

I really feel for you- this situation is really unbearable and so unfair for your little one to have this experience dominating his life and yours. You need more helpful medical people on your team sorting this out for you and your son. It appears that you have been left to seek help and solutions on your own..again and again. The ER Dr acknowledged that there was a problem but what's needed is some close attention and thorough and systematic treatment rather than passing the baton..again. Your frustration and helplessness is clear. It must feel like the time for a way through is long overdue. Who stands out in your recent visits who can stand up for you as an advocate and organise the help you need for your son? Can you return to the ER Dr and work together on this? A phone call to get your son seen much sooner?? Ask and insist on some effective management of these longstanding health issues. Who can support you and your son's health in other ways? Your mental health is an important priority too, as you have been on red alert for so long. Your son's quality of life is urgent but, unfortunately, medical systems undermine and disempower as much as they help and heal.