|mamfa||-- 07-19-2008 @ 9:35 AM|
I have a 3yr old with IgA def.
im always finding myself with Dr's that look at my son running arround the room very happy with a bit of a cough thinking that im being a hypocondriac.
I spend most of the consult time explaining that he has a high pain threshold and to please look in his ears/mouth/nose ect as i think he is sick.
then to their supprise, find a cronic infection. But to my annouance they always write in the notes that "child was very happy and dosn't apear to be cronicly ill" why do they bother with this!
My son has a high pain tollerance. He is sick so oftern that to some degree, pain is normal. Im sure many of you out there can relate? the thing that make me go to the Dr's is the obvious ones like high temp, vomiting ect or if he crys in his sleep. he is such a good sleeper unless he is sick.
I have been trying to teach him at times when i know that his ears are clear that "its good for ears to feel happy" and then once i know that he has an infection i tell him that "its not good for ears to feel sad and you need to let mummy know so we can help them feel happy again".
for you older ones, does it get better with age? and please tell me that he isn't the only one??
|lakegirlz||-- 09-04-2008 @ 12:32 PM|
Hi Sam, I can totally relate. My daughter will be 9 in Oct. These children don't know what's it's like to not be sick. They have learned to adapt their lives, if not they would just be on the couch or in the bed all of the time. I too find myself constantly having to "educate" the dr's. My daughter has an unspecified immunodeficiency-she has very low total IGG and 3 of 4 IGG Subclasses, everything else in just above normal. However she has spent her entire life sick. We've been in/out of hospitals, numerous surgies, etc... So when I don't have a specific name for the Dr's they think I'm making it up (or so I they make me feel). But, just like with your son once they do the exam-Whala! they see what we came for. I even had an ENT once who always told me that she did not have a sinus infection-I persisted until they did a CT and she had a complete blockage and ended up in surgery. I have finally just decided that it is my duty as her mother to advocate for her and not worry about MY reputation with the Dr's.
I hope it helps to know that you are not alone.
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