This is the story of Jenna (AKA Bean). Diagnosed at four years old with Juvenile Idiopathic Arthritis and Uveitis. This is her journey....
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Tuesday, December 23, 2008
Jenna Had an Eye Appointment Today
Ugh.....I don't know. When we saw Dr. Foster we left his office feeling elated. Today not so much. We didn't get bad news or anything. Dr. Berman said her eyes still look REALLY good and we can start tapering. I don't know there was just this wicked disconnected feeling. He also was INSISTENT on getting her pressures done. HOLY MOLY! It took Larry, me and Dr. Bermans assistant trying to pin her down while he tried to use the Tono pen or whatever it's called. PEOPLE! This is NOT going to work! From my understanding, if she is resisting at all it isn't going to give a proper reading so WHY are we doing this to her?! I am so worn out from it. Jenna slept like a log the whole way home. So anyway.....when she comes back in two weeks he will first try to sedate her to get a reading. If she still resists they will put her under anesthesia. I don't know.......is this REALLY necessary? I just want that elated feeling back.
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6 comments:
Wow! How traumatizing! When Jacob has refused they did a guess by putting their thumbs on his eyes when they were closed. I think if the pressures are really high they would be able to tell this way???? (I am guessing) I asked Dr. Foster the last time why we still need to have the pressures checked because he has been off the drops so long. He said that the cells could of caused scarring and this damage to the eye can in itself cause glaucoma. So it is still very important to check everytime. You must be sick to your stomach knowing you have to do that again in 2 weeks! I wish I had some advice to give you. I am glad to hear her eyes still looked good though! How many times a day now for drops?
Poor girl! He is a great doc but it just plain sucks to have to hold your child down. I want you to know that YOU are in charge and if YOu feel that it is not worth it then say NO. I have learned over these two years that you have the say in anything. The docs are there to help you and if you dont want it done then say no. There must be other ways or maybe waiting 4 weeks instead of 2. I dont know anything about Jennas eye problems but I do know a thing or two about being a mom that knows we have a right to put our foot down! I hope you guys are doing good up there!! I hear you have had a lot of snow.
Joanne....she is at two drops a day. I am still worried about her previous pressure readings. I do believe that they were accurate. I watched her eyes....she did NOT squeeze. Dr. Foster did the thumb thing. Don't know how accurate that is though.
Tanya.....I forgot that you guys saw Dr. Berman. Maybe we just caught him on a bad day? I don't know. I am learning about putting my foot down and that WE are in charge. It's just that the elevated pressure readings have us worried. I am thinking that I will allow them to sedate her once. See what the reading is when I know for sure that she is calm. Then take it from there.
has your Doctor discussed munchausen disease? You seem to be reaching for this. Perhaps some time out of the home would be helpful.
To Dr. Louise
You have no idea what it is like to have a child with this disease. Until you have walked in the shoes of a parent whose child is fighting this disease you should keep your comments to yourself! How would you like to go to bed at night thinking the possibility of your child going blind is a possibility? I am sure you would worry too!
From a mother who IS walking in Amy's shoes!
Dr. Louise - unless you are a REAL Dr. or have a child in the same situation with experiences to share, it is inappropriate of you to suggest a diagnosis, especially one that questions the child's illness and the mental health of the mommy. Shame on you.
Oh, don't bother commenting on my blog - I moderate :)
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