My 3 year olds bowels dont work!!!!

[desperatemotherof2]

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?????

Thank you so much for your time, and im at my whits end!!!

[ladybugs357]

I really don't trust doctors very much.  My son was always constipated, cried of belly aches and always seemed to be tired.  I had him at the doctors all the time for 2 1/2 years saying something was wrong.  They told me to give him Phillips Milke of Mag. for the constipation which worked and they gave me some kind of liquid medicine for the Reflux which didn't really seem to work.   When he was sick with a cold, he was really sick...not like other normal children.  I would have to hold him 24/7.  Even my so called friend acted like I was just totally overreacting...every kid gets sick.  I just knew there was something terribly wrong.  Finally I took him to just a regular clinic and they did the finger ***** test twice.  It showed his blood count was extreemly low.  I made an appointment with his regular doctor immediately and insisted they do a blood test. They said it couldn't possibly be that low but the did the blood test anyway.  They immediately sent me to John's Hopkins University.  He had no blood in reserve left and wasn't making any blood.  One bad cut could have killed him.  The doctors said they couldn't believe he was even walking.  They said it must have been so gradual that he adapted.  Apparently, he was highly allergic to milk.  The consumption of milk caused him to be unable to absorb iron, which is needed to make blood.  The first two days, they lowered his intake of milk.  He was still not making any blood.  And they kept taking more blood samples.  I remember thinking, they told me he doesn't have any blood in reserve...how much more blood can they take?  They told me they know when to stop.   After that, they removed all milk products from his diet and  an upped his intake of vitamin C.  Only then did he started making blood.  That evening, he started making blood again.  I'll never forget it.  I thought he had some kind of cancer and I was devastated. The point is, all of this could have been prevented by a simple blood test that is routinely given at 1 1/2 to 2 years of age which would have alerted us that his iron was low.  When I asked why he wasn't given that blood test, she responded that he always looked so healthy.  If I hadn't taken him to that clinic, he probably not be here right now.  Always trust your instincts.  Even if others act like you are crazy.  

[MImom0608]

I wanted to let you know that you are not alone in the ped. GI stuff.  But first I wanted to tell you my fiancee had Pyloric Stenosis when he was a baby.  He spent about 3 years in the hospital in his first 10 years of life.  But his issues weren't quite as complex as your sons case.

Second, on to the GI stuff.  My daughter has reflux and has had it since she was born.  They just started listening to me (2 and a half years later).  But when I found out that she needed to see a GI I found out where and the doctors office tried setting up the appointment.  They couldnt get her in until June which infuriated me.  So, I found out where else these individuals worked (I guess they cover all of lower MI and Toledo) so anyways.  I proceeded to call the insurance company and give them a piece of my mind about covering the GI's in one city and not in another.  I was able to get gap coverage for her to go to another city to be seen.... but they didnt have any openings till June either.  (what a waste)  

So if I were you I would be calling you insurance and finding out what ped. GI's they cover.  From there I would be hitting the phone.  If the GIs work in many areas see if you can get him in in another city.  But while doing that make sure your insurance will cover that city or convince them it HAS to happen.  Where do you live?  If you live in this area I can tell you the 5 GI's but cannot give a recommendation since I have not met any of them.