beacuse I believe in the power of prayer.. i need your help

[FatBoy]

Prayers to your son, you, and your family from the Fat Boy Crew.

[tigerlily]

thanks christie as a mother im sure you know what its like... something being wrong & it being totally out of your hands it is great having a few very scarey ones marked off. its been a very long almost 2 years with him.

That's the absolute worst feeling in the world. My son had to have surgery when he was 2, and the doctors woke him up before the pain meds had a chance to kick in. Those were some of the worst moments of my life, but through all that all my son wanted was me. To be held by me. Such a humbling experience.

I'm glad your sons have you to lean on. It sounds like you're a great mom.

[Royal Tartan]

Ashley ...I was about to post about celiac disease , my eldest suffers from it ....when I saw Frankykeno post.

I have a very strong feeling about this .

A duodenal biopsy should show if it is celiac disease .

If it is this , its diet controlled ...ie Gluten free diet


It can be hereditry as well , tho can skip a generation .

Foul smelling fecal matter can be another indication , as can distended abdomen in toddlers .

Either way I am sending Healing rays your way Ashley

[munding]

i will be praying for your son and your family.

God bless.

[frankykeno]

Ashley ...I was about to post about celiac disease , my eldest suffers from it ....when I saw Frankykeno post.

I have a very strong feeling about this .

A duodenal biopsy should show if it is celiac disease .

If it is this , its diet controlled ...ie Gluten free diet


It can be hereditry as well , tho can skip a generation .

Foul smelling fecal matter can be another indication , as can distended abdomen in toddlers .

Either way I am sending Healing rays your way Ashley

That's what they are doing with the little guy I know with celiac. A special diet (there a tons of excellent cookbooks for cooking for the celiac child out there). I literally cannot believe that turn around that child showed. He went from being skinny with that belly, being sick all the time, not thriving or growing right and a few months later, the kid is racing around the backyard like any 3 year old. It was like a miracle! The sad thing is how often celiac isn't diagnosed quickly enough. This particular child was ill for most of his life, in and out of doctor's office, his parents were even scared that someone would think they were neglecting him - and it ends up being something that can be managed with a special diet. It's been 3 years now since his diagnosis and he's doing beautifully, even knows to tell people what he can and cannot eat.

[ADEE]

thanks everyone again for the thoughts and prayers..

Joanna, I will ask the ped this afternoon when we go in (routine check him over now that hes home visit, schedule specialists, exc) I do know the ENT wants to also do a silia (different than ciliac?) biopsy and see if its that. I will certainly mentain what you wrote, in fact ill write down the exact name so not to mess it up. thanks for the suggestions (you too royal), at this point im no doctor either but they have made ALOT of misdiagnosis's along the lines, from cystic fibrosis to autism with him (no joke, they were so certain about CF they even did the gene test after the sweat test was negative) anything is worth bringing up at this point, the creepy thing is he does have a distended stomach area (like a small ball under the skin on his abdomen) and has some FOUL poops, we have always said that! thanks so much for the input.

[frankykeno]

Ashley, there's a number of tests I believe to diagnose celiac disease. Some are blood tests (though in very young kids my reading says they can come back false negative), as well as a couple of more invasive but necessary tests. If I was you before that appointment today I'd be googling my butt off about celiac disease and young children.

For a disease that some doctors seem to think is "fairly rare" there's a LOT of links, research sites, parent support sites, etc. Arm yourself well with this stuff, heck print stuff out if you want to show your peds doctor. It sure sounds like your little guy has some of the signs of celiac so it's something to definitely discuss with the doctor today.

I know before the little guy we know was diagnosed they asked the parents to NOT put him on a gluten-free diet as they needed to get the reactions in testing. Then he went on his gluten-free lifestyle and it's a remarkable change. It was a relatively fast diagnosis though after all the years of nobody knowing what was wrong and this child just going downhill more each year.

From what I read on some of those sites I posted for you, there are even blood tests to see if you and his dad carry the markers that mean he could have inherited celiac as it's a genetic disease. Do you know of anyone in your family or your husband's that has irritable bowel disease, crohn's, delayed puberty, unusually short stature, failure to thrive babies, etc.?

[frankykeno]

Another thing Ashley, think back. At what age did your son start to just not "look right" to you, your gut instincts as a mom were sort of triggered. Was he a healthy nursing infant but that started to change after the introduction of baby or table foods? Lots of commerical baby food has gluten in it as well as things as innocent looking and popular with kids as ketchup. I'd sit down and go back in your mind to the time when he was healthier and at what age these health issues began to manifest themselves, even if it was only you that saw them at first and the doctors blew you off (some do and think we are "just a nervous mother").

[Royal Tartan]

.....have a distended stomach area (like a small ball under the skin on his abdomen) and has some FOUL poops,

Ashley , these are CLASSIC symtoms of the disease . It is very often not picked up by peds.

Gluten attacks the digestive tract , specifically the villi , Gluten makes these villi useless. Its the villi that extract the nutrients from digested food . If it is not extracted by the villi , it rots in the digestive tract ...hence foul smelling poops.

Swollen abdomen is also indication of digestive problems with Gluten .

The only 100% sure fire way to tell is invasive sadly ...duodenal biopsy .

As has been stated , once diagnosed ( if it is that ) it is very easily sorted and also the change is startling ...I have witnessed my daughter transformed after being diagnosed ( BTW of which I had to fight our peds here , they had lack of knowledge also ) .

Also , sadly , there is no known cure for it but there are heaps of support groups around .

[ADEE]

Well, i just got off the phone with one of his specialists and he doesnt have HIV (uh yeah, knew that one!) and he does NOT have celiac disease either, turns out they DID do blood tests on him (As well as lots of stool tests, turns out his are just stinky but he has wonderful nutrician absorption) back to the drawing board.. there are still LOTS of tests that havnt come back yet but as the results come in they will be calling us.

Joanne, Ethan fell off the growth chart when he turned 3mos old. His growth slowed, as did his development. he never even walked until he was well over 17mos. he nursed until he was 18mos, never had processed baby food and never had a drop of formula... we made everything he ate. even later on now that he eats regular foods (stirfry, raw fruits, veggies, exc) nothing has gotten better or worse this all started a LONG time ago. My sisters were VERY premature twins but other then them we dont have any history of "failure to thrive" everything down the lines had a reason (uncle was small had some sort of disease, cant remember what, twins were premature with LOTS of health issues, Darren (ethan dad) was skinney but is a normal sized man now) so otherwise no. Aside from obesity on paternal side, my side has some diabettes, all late onset. We have some history of high blood pressure also late onset, most likely caused by diet. so really overall were a pretty clean slate in terms of health. But like my mother says jokingly (so messed up i swear) two donkeys cant make a racehorse lol.. the doctors said realistically if blood tests come back fine and colonoscapy and endoscopy come back fine he will leave the dr with a diagnosis of "failure to thrive with developmental delay" which is exactly where he stands now.. plus iron deficiency anemia which likely caused his heart murmur... thanks for your input everyone.. im not about to give up now we will exhaust every effort to find out something! 3pm is his dr appt