i am so frustrated with my 10yo's treatment right now. i feel as though since he's been diagnosed and treated (july '14) things have only gotten worse.
he was started on pred, 6mp, and flagyl in aug--with the flagyl to treat a perianal fistula. the initial change once he started pred was miraculous. as another poster noted on here, i really did not realize how sick he was until i saw him better. it was like i finally had my baby back for the first time in 2 years. like i'd be looking at a partial ghost of him up until that time. i keep trying to remind myself of that.
he stopped taking both pred and flagyl in november. around that time, he started getting low grade fevers, very mild diarrhea, and the common cold. i called the doctor about this, and they said it sounded like it was just a virus. they were taking blood work for the 6mp, however, and said that his inflammatory markers were a little elevated.
in december, he got an ear infection. inflammatory markers were still slightly elevated, yet they kept telling me he "looked good". he still had very mild diarrhea, smaller apetite, less energy, etc. with no sense of urgency or interest, they told me i could do a stool study to rule out infection. then when we went to clinic they said he "looked good" so not to bother with the study.
a month and more blood work (for the 6mp) later, my son still had these symptoms. he started complaining of his stomach hurting. again, when i called, they seemed less than concerned and suggested a stool study. having a very stubborn child and strict, limited schedule as a working single mother of 3, it took me a couple weeks to collect the sample within the right time frame.
yesterday, the nurse called me and said he tested positive for c. diff. now we're back on the flagyl. we're going to clinic on feb. 4 so i suppose we have yet to find out how we'll be treating the c. diff moving forward, as googling this thing makes it appear as though we've got a pretty bad demon on our hands.
looking at the big picture thus far, my son had diarrhea, low energy, a poor apetite for a while. amidst emotionally traumatizing preliminary testing, he spent about 2 months being normal (while on pred), and now he's been sick for the past 2 months or so. the medicine that was making him better has only made him sick. i'm so frustrated. i feel like quitting the treatment. my son doesn't handle the treatment or tests well emotionally. i'm having a hard time seeing the light at the end of the tunnel. i don't plan to actually quit treatment but i'm definitely taking a closer look at all of the variables and treatment options.
aside from the 6mp, he's also been taking omega-c and vitamin d supplements, as well as a probiotic.
http://www.crohnsforum.com/images/smilies/sign0085.gif
he was started on pred, 6mp, and flagyl in aug--with the flagyl to treat a perianal fistula. the initial change once he started pred was miraculous. as another poster noted on here, i really did not realize how sick he was until i saw him better. it was like i finally had my baby back for the first time in 2 years. like i'd be looking at a partial ghost of him up until that time. i keep trying to remind myself of that.
he stopped taking both pred and flagyl in november. around that time, he started getting low grade fevers, very mild diarrhea, and the common cold. i called the doctor about this, and they said it sounded like it was just a virus. they were taking blood work for the 6mp, however, and said that his inflammatory markers were a little elevated.
in december, he got an ear infection. inflammatory markers were still slightly elevated, yet they kept telling me he "looked good". he still had very mild diarrhea, smaller apetite, less energy, etc. with no sense of urgency or interest, they told me i could do a stool study to rule out infection. then when we went to clinic they said he "looked good" so not to bother with the study.
a month and more blood work (for the 6mp) later, my son still had these symptoms. he started complaining of his stomach hurting. again, when i called, they seemed less than concerned and suggested a stool study. having a very stubborn child and strict, limited schedule as a working single mother of 3, it took me a couple weeks to collect the sample within the right time frame.
yesterday, the nurse called me and said he tested positive for c. diff. now we're back on the flagyl. we're going to clinic on feb. 4 so i suppose we have yet to find out how we'll be treating the c. diff moving forward, as googling this thing makes it appear as though we've got a pretty bad demon on our hands.
looking at the big picture thus far, my son had diarrhea, low energy, a poor apetite for a while. amidst emotionally traumatizing preliminary testing, he spent about 2 months being normal (while on pred), and now he's been sick for the past 2 months or so. the medicine that was making him better has only made him sick. i'm so frustrated. i feel like quitting the treatment. my son doesn't handle the treatment or tests well emotionally. i'm having a hard time seeing the light at the end of the tunnel. i don't plan to actually quit treatment but i'm definitely taking a closer look at all of the variables and treatment options.
aside from the 6mp, he's also been taking omega-c and vitamin d supplements, as well as a probiotic.
http://www.crohnsforum.com/images/smilies/sign0085.gif
however he finally stopped complaining about the taste after a tantrum and then being with grandpa (a doctor, although unfortunately not a ped) all weekend. Interestingly, i tasted it and did not notice any flavor. I guess everyone is different. 
feel like a bad mom.
