I have given up!

[katyc]

Jack was suppose to have his scopes on Monday BUT because he now has a fever and what they believe to be hand, foot and mouth they will not do it.........so i went through one night and morning of pure hell with him and the miralax and have decided not to reschedule.....

I am going to wait until he gets sick again and we will go from there.....

As a single mom going to school full time its been hell on me waiting these to weeks to get the scopes, arranging care for my four year old and working with my professor (she only does scopes on monday the night of my class) so Im not going to do it.....the GI doesnt believe he has it anyway....

He is doing good for now and gained back a pound....he is having only around four poopy/diarrhea diapers a day

He would never take the Ellacare so its back to lactaid also ..

I just can never catch a break with him not being sick and hes always crying or irrtable and I just am beyond my breaking point......we have a few good days and then ten bad ones....

 

[imaboveitall]

Aw Katy...that is awful.
Does he have mouth sores, is that why they are saying it is Coxsackie virus? Mouth sores can be from Crohn's, you know. And a fever does NOT preclude scoping a child, at all.

I'm wondering what kind of docs he has...that sounds like poor medical decision making. He obviously has something wrong beyond a virus. It could be Crohn's , or something far more obscure as in mitochondrial disease (I recall thinking this from your other posts) or even a chromosomal abnormality, many of which cause malabsorption and symptoms similar to Baby Jack's.
He needs a complete workup by a team, he is just an infant and is chronically ill with symptoms not yet explained. He needs a full workup including a consult with a genetics counselor (this is my field) or geneticist.

I am SO sorry, hon...you must be a wreck. HUGS :heart:

 

[izzi'smom]

How awful for you... Izz had a cough and I told them they needed to let me know ahead of time if it would affect her procedure...prepping is hard enough!
I am so sorry...you must be overwhelmed (I am a single mom too...(((HUGS)))

 

[DustyKat]

Oh man katy, I am so sorry to hear this... Prepping is the pits but it just downright sucks when you have nothing to show for it...:hug:

:hang: Mum, you are doing fab job!

Dusty. x:heart:x:heart:x

 

[katyc]

Aw Katy...that is awful.
Does he have mouth sores, is that why they are saying it is Coxsackie virus? Mouth sores can be from Crohn's, you know. And a fever does NOT preclude scoping a child, at all.

I'm wondering what kind of docs he has...that sounds like poor medical decision making. He obviously has something wrong beyond a virus. It could be Crohn's , or something far more obscure as in mitochondrial disease (I recall thinking this from your other posts) or even a chromosomal abnormality, many of which cause malabsorption and symptoms similar to Baby Jack's.
He needs a complete workup by a team, he is just an infant and is chronically ill with symptoms not yet explained. He needs a full workup including a consult with a genetics counselor (this is my field) or geneticist.

I am SO sorry, hon...you must be a wreck. HUGS :heart:

He has sores in his mouth way back at the bottom of his throat....not on the inside of his cheeks or on the roof of his mouth.....he has red bumps on his arms, elbows, legs, thighs....not much at all on his palms or the soles of his feet....he did have a fever of about 102.7 on thursday and then the rash came on friday.....he is doing much better today.....I wish they would have said we will re-check him on sunday evening cause they could be gone by then.....I cant go through the prep again and we only did three does of miralax......I honestly dont want to put him through that again...we were up all night.....so I will wait until he gets sick again.....he was doing well with the poops....

 

[imaboveitall]

I'm at a loss...all I can say is, please get him looked at by a good diagnostic ped or a genetics counselor.
Poor little fella. :heart: