Im so FRUSTRATED!!!!

[katyc]

Today the GI doctor called (well the nurse) and said she would NOT be scoping Jack because although his blood test showed no antibiodies(sp) <I hope Im right on that> she does NOT believe Jack has crohn's becuase of his age...(17months)

So are appt on Monday will be a routine check up.....what a waste of my time....
They said since he is doing good no and no diarrhea that hes fine.

Is that doctor stupid....look at Jack's history....hes been miserable for months, losing weight and has been hospitalized for diarrhea and deyhdration...

Why wouldnt see want to scope him to rule out crohn's.....so then we can move past that and look at something else.
Cause just because he is not pooping like crazy now doesnt mean it wont start again....


SO FRUSTRATED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[mickey]

Perhaps call around at university hospital and see if they have anyone specializing in Crohns who may be able to check your son? Keep fighting...you know your son better than anyone! Good luck!

 

[katyc]

Perhaps call around at university hospital and see if they have anyone specializing in Crohns who may be able to check your son? Keep fighting...you know your son better than anyone! Good luck!

His GI doctor is at our only Childrens Hospital......Im going to ask today for a different referral to a new GI.....We live in a small town so Im not sure if theres more than one....

 

[Tesscorm]

Also, do you have a children's hospital near you. Even after many tests and a visit to our local hospital's ER, when we finally took him to the children's hospital, he was diagnosed almost immediately.

 

[Tesscorm]

Oops, sorry didn't see your reply...

 

[katyc]

Oops, sorry didn't see your reply...

Its okay......:ytongue:

I just dont understand why they wouldnt want to scope him and officially rule out crohns......doesnt that make sense???? Im new to all this so I dont know much.....

I dont think she has ever dealt with somebody this young....

Im waiting for my primary doctor to call now....

 

[imaboveitall]

Katy, that is absurd. Tell that to the mother on here whose baby was dx at 8mo, and another I think around 15mo.
And we all know that MANY cases of IBD do not have diarrhea, or even abnormal stools period. Violet has never had a single abnormal stool and she almost died from Crohn's in 2008 while producing textbook perfect stools.

Seriously look up mitochondrial disease; it immediately popped into my head when reading his history in your other thread. From what you posted on Baby Jack's hx he may have more going on, but a scope is surely a good idea to r/o MANY things via biopsy.
God love you guys...sick babies break my heart. :heart:

 

[katyc]

Katy, that is absurd. Tell that to the mother on here whose baby was dx at 8mo, and another I think around 15mo.
And we all know that MANY cases of IBD do not have diarrhea, or even abnormal stools period. Violet has never had a single abnormal stool and she almost died from Crohn's in 2008 while producing textbook perfect stools.

Seriously look up mitochondrial disease; it immediately popped into my head when reading his history in your other thread. From what you posted on Baby Jack's hx he may have more going on, but a scope is surely a good idea to r/o MANY things via biopsy.
God love you guys...sick babies break my heart. :heart:

I will look that up......
Thank you for the support.....I feel so alone in all this.....

So is it possible for him to still have tummy pain and horrible gas....last night I watched him stretch out his arms and kinda shake put his butt up in the air and have horrible gas.....he flopped around on both sides and then went back to sleep......even though he doesnt have the diarrhea????

 

[imaboveitall]

Heck YEAH it is possible.
V had horrible gastric pain along with the perfect stools.
SIBO (small intestine bacterial overgrowth) can cause what you describe and is common in IBD pts and other conditions. V's doc tested her for this.
SOMEthing is going on with that baby...I can't believe they aren't all over it with testing.

 

[katyc]

Heck YEAH it is possible.
V had horrible gastric pain along with the perfect stools.
SIBO (small intestine bacterial overgrowth) can cause what you describe and is common in IBD pts and other conditions. V's doc tested her for this.
SOMEthing is going on with that baby...I can't believe they aren't all over it with testing.

They have done stool samples, blood tests, urine cultures (which grew staph but he said that was common) and we have tried several diet changes...

I honestly dont think they believe me and we live in South Dakota we may be a little in the dark ages.....I really dont know.....maybe because we have state insurance????

 

[imaboveitall]

What you describe seems common enough ALL over geographically. Once I started reading a few threads (ok more than a few, as I became obsessed :shifty I was ASTOUNDED to read how many folks are misdiagnosed and NOT diagnosed quickly, and not tested for the right things. denied scopes etc.
Sadly Baby Jack's story is not that unusual!

You must press for answers and for testing. Blood tests are often normal even with very sick kids (V's were off but not by much, Dusty's daughter's were off but not by that much and she needed emergency surgery, those are just two examples of labs not matching what is actually going on inside) and a scope is the BEST way, they need to biopsy him and see what is happening at the cellular level.

Mitochondrial disorders are even harder to diagnose so do your research on that and demand testing if you think it fits him. It's the kind of disease they won't find unless they are looking for it specifically, it won't be an accidental finding. A thing I was told when in grad school re: mitochondrial disease is, if three or more systems are affected and no obvious cause, test for it.

 

[DustyKat]

Hey katyc,

To base that decision on age and blood results is ridiculous. Of course children of Jack's age have been diagnosed with IBD, just because the nurse hasn't seen it doesn't mean it doesn't happen. She really should get out and educate herself, not only that but scoping is still the gold standard when it comes to a diagnosis of IBD and other bowel disorders and that should be part of the process. When making a diagnosis it is very much a process of elimination, they do not know what is wrong with Jack so you start testing, as each test is done and results received you can then either rule out a condition, conduct further tests or make a diagnosis.

It is not uncommon, in children, to have normal blood results. When it comes to diarrhoea, well neither of my children suffered with diarrhoea. My daughter tended more to constipation and my son had one normal bowel motion a day. I personally think that if you don't have large bowel involvement and your disease is therefore higher in the bowel then diarrhoea can be absent, as a symptom, for many people.

The stool tests they did, were they testing for infection only or did they do a feacal calprotectin test?

Dusty. xxx

 

[kimmidwife]

katyc,
I have to agree with what everyone else here said. He needs further testing. Go out of state if you have to. but get another opinion!

 

[izzi'smom]

I second all of the above^^^and good luck!!