I'm new to this site and from ireland
well i am eoghans mother and this is his story so far.
he was diagnosed with Charon's in January this year
he is 9 years old since April.
eoghan started complaining in Oct 07 of constipation cramps
weight loss it was put down to chronic constipation
in November he had a rental pro lapse .
December went to see surgery team at hospital they still said it was constipation
that same month eoghan went down hill
he was skin and bone couldn't eat he was fading away in front of me
he started getting soars on his mouth got antibiotics off doctor
the 2nd of Jan 08 i went to hospital he couldn't even walk at this stage
he was admitted
he whole body was down
he received blood transfusion once somebody knew what they were doing
he was very very sick
eoghan got great treatment once they knew what was wrong
i was devastated to hear that eoghan had chrons but relieved at the same time
for months i kept looking at my child getting sicker and sicker and was told it was in his head
was he been bullied was he worried ,stressed etc
eoghan was treated on flagyl steroids, and pentasa and 6mp, losec mups
he received upper and lower endoscopy .
the surgeon said after that it was the worst he had ever seen
he couldn't go up far in case he nip ed him
eoghan was doing really well on his meds
he ended up just on 6mp
eoghan started getting eye pain ,could last 20 min
my GP said migraine or it could be the 6mp
the GI team said no it wasn't the tablets . i had read on this site about photo phobia .
so i got eoghan checked by an optician .he found traces of photo phobia and inflammation of the eye so waiting to see opthamologist to sort that .
eoghan stomach was feeling bit off and with the eye the GI nurse along with one of the doctors prescribed eoghan with flagyl and increased his 6mp
this is the good bit eoghan was taking half a tablet of 6mp there 50mg tabs. so the letter i got out from the hospital was for eoghan to take 1 tab one day and 2 tabs the next alternating tabs 2/1 every other day.
i should have known better
eoghan took this amount until he was admitted to hospital last week for a fistulas. eoghan had bloods taken and given flagyl and ciprofloxacin .then the questions of the 6mp came up he was getting too much for his weight the nurse that sent me out the letter her face said it all .it was a mistake by her and i do take blame too for not been more award of the dosage .
tabs got sorted he was put on 50mg a day which is one tab a day
the bloods eoghan had done on the day he was admitted Saturday showed up fine but when bloods were done again Tuesday his white blood cells were way down 1.0 i think he was taken off the 6mp for that day and bloods repeated again wednesday still very low so his off the 6mp bloods done again yeserday and its up to 1.1 going back next Thursday for bloods and to discuss what to do about the 6mp
i think the tablets had something to do with his white bloods cells going down but what i cant understand is why his bloods were OK when he was admitted and than went so bad?
the fistulas is ok now..
Post Edited By Moderator (MMMNAVY) : 10/25/2008 7:50:29 AM (GMT-6)