Hi all , well last week lewis had infliximab and he's been doing great we had to repeat some blood works I asked what for they said said some were inconclusive and I though nothing of it , I have now seen the in a letter and what it was for and chronic granulomatous disease so a neautophil function test was needed as the results showed under stimulation . I'm not due back in till tuesday and my doc isn't in for the rest of the week has anyone else had these tests done and they come back under stimulated, I no what the implications are if it is this disease and will that mean his crohns will get worse quicker aso many questions wished I'd not got the letter now and waited till the doc told me in person . Xx
-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Chronic granulomatous disease !! worrying report from docters
- Thread starter Lewiss mum
- Start date
OK, if you haven't looked it up yet, please remember that treatment has come so far. Thank God. Here's a link.
http://en.wikipedia.org/wiki/Chronic_granulomatous_disease
http://en.wikipedia.org/wiki/Chronic_granulomatous_disease
Hey mrs . I've looked it up and there is a cure its just what the cure entails my head is spinning just hope its not that's wghat has caused the crohns . Trying to be positive the results could come back better ythis time but its just so odd that everything is what lew has had and were his inflammation is . Finngers crossed .xx how's gracie doing .xx
As someone once said" don't worry about what may be that is like paying on a loan you ma borrow five years from now with interest"
Hugs it is never easy .
Hugs it is never easy .
Hey Lewis mum
My daughter had a blood test for chonic granulamatous disease. It was called an NBT on the form.
My daughter went for a routine blood test and the nurse had never heard of this test so she rang the childrens hospital. We were told to go back a few days later to have the test as the blood had to be taken straight to the childrens hospital within 4 hrs. A week later we had our appointment and the results weren't there. Its been a month and we never heard anything so i'm assuming everything was ok.. we have an appointment tomorrow so i will bring up the test.
Try not to worry it might be nothing.....:hug:
My daughter had a blood test for chonic granulamatous disease. It was called an NBT on the form.
My daughter went for a routine blood test and the nurse had never heard of this test so she rang the childrens hospital. We were told to go back a few days later to have the test as the blood had to be taken straight to the childrens hospital within 4 hrs. A week later we had our appointment and the results weren't there. Its been a month and we never heard anything so i'm assuming everything was ok.. we have an appointment tomorrow so i will bring up the test.
Try not to worry it might be nothing.....:hug:
Thanks upset mum, lewis results have come back once and they were under what they should be so that's why iom assuming its had to be repeated to compare , I've got hold of our docs secretary and she said the resluts have to be cheaked by our docter and he.ll come to see us on tuesday when he does for infliximab , iwill you let me no what the doc says about the nbt test I think lew had that and then had the dht or somthing called that done to look further into it. I hope all goes well with u at the docs speak soon.x
- Location
- Northern California, USA
CGD is an inherited immune deficiency disease so it is likely there would be family members with the same illness or with symptoms that suggest the diagnosis.
Here is a link to a very thorough explanation of the disease. Note that at the end of the 12th paragraph it refers to the rate of IBD (20%) among patients with CGD and that CGD can mimic Crohn's.
So it is important to rule this out as a possible diagnosis or cause of his Crohn's.
http://primaryimmune.org/about-prim...s/types-of-pidd/chronic-granulomatous-disease
Here is a link to a very thorough explanation of the disease. Note that at the end of the 12th paragraph it refers to the rate of IBD (20%) among patients with CGD and that CGD can mimic Crohn's.
So it is important to rule this out as a possible diagnosis or cause of his Crohn's.
http://primaryimmune.org/about-prim...s/types-of-pidd/chronic-granulomatous-disease
Lewis's mum
I still don't know the results from the NBT test as we saw the doctor yesterday on short notice and he didn't even have the computer on ... it was close to 5 so i'm guessing he was in a hurry to go home. I'll just have to wait till our next visit to ask again.
How's your son?
I still don't know the results from the NBT test as we saw the doctor yesterday on short notice and he didn't even have the computer on ... it was close to 5 so i'm guessing he was in a hurry to go home. I'll just have to wait till our next visit to ask again.
How's your son?
Hey lewis is doing brilliant he's put on weight and he's back to his cheeky little self infliximab has done him the world of good I've got my little cheely boy back for all the back chat I can cope with as long as he feels better he said to me that he feels better that's made me smile since so good times are ahead , I'm sorry u didn't get your results today I hope I didn't panic u with my post, we going tuesday the consultants secretary said they are back but need checking by him hell come to see me tuesday. So I.ll have an update then. Hope your both well. Dosnt having a child with crohns have u living on the edge.x