[Samuelsmommie]

I am normally a very private person, but the news that I got today about my two year old son has rocked the foundation of my world and I could really use some support and prayers please.

My son doesn't eat food. He drinks about 7 to 8 bottles of pedia sure a day. He has never been a good eater even at birth. He was 5 1/2 weeks early. His doctors had been hoping that things would get better as he got older, but they haven't. He has OT that comes to our home weekly to help try to get him to eat.

Recently his pediatrician thought he wasn't doing as well as she had hoped and wanted to start running some tests. Let me say this when I say he doesn't eat food I mean just that. He will pocket food in his jaws or chew it up and then spit it out. Very little swallowing of any foods. If he asks for fries we run out and buy some, after he eats three (if that some days) he will tell you all done and won't eat any more. Sometimes he will go days without eating ANYTHING. So we have had a few close calls where they thought they would have to put in a PEG tube for feedings. But we have been able to hold his weight steady with pedia sure, so haven't had to go that route yet. But doctors have cautioned us that if he ever refuses pedia sure we will be in trouble. He got sick with a little cold about a month and a half ago and refused pedia sure for 3 days. It scared us beyond belief, because he doesnt have fat reserves of a "normal" child any illness can spell disaster for us. After that scare we all agreed we needed answers.

1st test ran was a swallow study... Results normal.

2nd test ran scope... He had to be put under sedation... Results top of his
small intestines full of acid... Put on Previcid 2x a day.

3rd test ran a week and a half after second MRI, which was this past Friday and again he had to be put under sedation...

Results of the MRI where given to us today while at the GI doctor who ordered the test.. He said the scan showed Samuel has a Chiari Malformation f the brain and that he was sending us to see a neurosurgeon and sending the results to our pediatrician also. He said they may have to operate on his brain that this may or may not be the answer to what is going on with him or that it could just be another piece of the puzzle.

They have also started him on a medication to increase his appetite. He's been on it for about a month and a half (since the pedia sure scare). It is making him eat a little more not much though, but it is causing him to stuff and pocket food in his cheeks more.

I am reading all I can on this because I've never heard of it before. We told our older children they are understandable upset. I'm reall worried about my 16 year old. He and Sam are the best of friends and their birthdays are just one day apart. When I had Sam, my son told me in the hospital that his little brother was the best birthday gift I could ever give him.

I know this is long I'm sorry, I just needed to tell someone. We've called family everyone is crushed and wanting answers and I just don't have them right now. The last thing the doctor told me today was "Let's keep praying. Try not to worry, we will make it through this."

Please please pray for my baby! I can't stop crying....
I keep going in the bathroom to cry because I don't want him to see me upset.