Thursday, May 29, 2014

Eyes and Ears

Last week Jackson had a eye appointment that Mike took him to.  His eyes are improving but his pressures are way up from the steroids despite being on the pressure drops twice a day.  Normal range is 12-22 and Jackson's were 35/36!  So off the pred forte and back to FML.  But everytime we switch to FML the cells get bad.  Its like a bad back and forth game we keep playing.  So today we saw rheumatology and Dr. Vehe said we may just do another increase in the remicade infusions.  Joints are looking good.  The warmth in his knee joints was gone today so the new med, Mobic is helping!  But I had told Dr. Vehe that Jackson just recently had a double ear infection and after 3 days on antibiotics he was still crying in pain and he had a bunch of fluid come out of one ear which I belived was from his ear drum rupturing.  So Mike had brought him back into the doctor who said he was fine and the pain was just from the fluid in his ears.  And one doctor I talked to when I called said he didn't need the antiobitics that ear infections don't need to be treated.  Well Jackson's hearing has been bad since before the ear infection so about 4 weeks now.  Dr. Vehe looked in his ears and said there is still fluid and you can see some damage from where his ear drum burst.  Dr. Vehe was pretty disgusted with the doctors here and said they just don't seem to understand given Jackson's health issues and meds he needs special care and should of been switched to a different antibiotic.  I always say a mother knows best and I knew there was more going on.  So he told me to make a appointment to have his hearing checked so they can see that the fluid is causing him problems and then hopefully we would get a referral to a ENT doctor who can remove the fluid.  Dr. Vehe said be prepared to fight and probably have multiple appointments before someone will listen as they just don't understand Jackson is not a normal healthly child.  So we are scheduled for tomorrow morning for a hearing test and appointment with the ped.  Wish me luck!