What to do?
Tue, April 07, 2009 12:00 AM
My Bubbaa is having a rough time this year. The frustrating part is that he isn't hugely ill but he has not been himself all year. As a mother you know your child and you know when they are not quite right.
My beautiful boy is now 2 1/2. Our last appointment with the specialist was a month ago and he reiterated that he was waiting for his inflammation levels to be hugely high and bleeding etc to put him in for scopes. His last ones were done at 8 months of age.
It frustrates me that they want to wait until he feels like crap to check out what is going on. I do understand that they will see a lot more inflammation and ulcerations at that time.
I have an adult friend who last year had a pouch put in. When talking to him about the pain my son goes through on a regular basis, he could relate to the pain he was having just from the scar tissue and no elevated inflammation levels.
We have him on so many different meds for different things. He is anaemic from the Crohns, Ferretin is so low that he now has restless leg syndrome, taking ferretin supplement makes him really ill, not taking ferretin he is constipated and has huge seizures trying to go to the toilet, even though he doesn't actually have to go.
Where is the balance and where do you draw the line? I think it's time that we started looking at diet, but they keep saying to let him eat anything.
Who can helP?
Joined Mar 30, 2008
Fri, April 10, 2009 12:00 AM
Reply posted for loving mother.
I am so sorry to hear about your little one!!!!! My little guy is 9 and was just diagnosed last week. I also have crohns and know only too well. Do you believe in the pholosophy of what he eats helps or doesnt help? if you do, try taking all the gluten out of his diet, which is highly inflamitory. It is really hard, that is for sure, but my be a good start.
God bless!!!!
venushayesJoined Apr 10, 2009
Fri, April 10, 2009 12:00 AM
Reply posted for Bubbaa.
I am so sorry you are going through this. Your son is so young. My son is 7 and was diagnosed last October. I do not understand why they have to wait until he is physically that sick to do testing. Have you considered a second opinion? I hope you can get answers so your little one can get relief soon. Keep us updated. I will keep your baby in my thoughts and prayers. Take care.
Joined Nov 28, 2008
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