Thursday, May 7, 2009

The eye exam

Maddison had a meltdown during her eye exam today. I wasn't surprised after last nights misunderstanding, although I think the trigger for the meltdown was the fact that she ran in the high 260's again all day at school today. Then she crashed to 60 around noon, after I got too aggressive and apparently overdid a correction on this early release day. I swear, the child steps foot off school grounds and everything changes. I was at work, and Hannah was told by phone to give a bit extra insulin for Maddison's high since she hadn't budged all day. Damn basal increases today didn't touch her highs AT ALL. She left school grounds and her insulin decided to work I guess, sending her crashing. So, Maddison running high again today left her with a tummy ache, dark circles under her eyes, muscle aches and a yucky mood. By the time we were called back to start her eye exam she was a mess. When the Tech started the Glaucoma test blowing air in her eye, she lost it.

There was no explaining. Maddison was sure we were out to torture her. I guess having been in the hospital and ER too many times she isn't so trusting anymore. She cried. She refused to do the other eye. Then the Tech threatened her telling her that if she didn't co-operate they would have to put some (what ever) stuff in her eyes to complete the Glaucoma test. GREAT. Just what Maddison needed, to be threatened on top of her feeling like crap, on top of her tummy ache, on top of her fear of what an eye dilation really is. Long story short, the Doc saw us anyway and wasn't concerned about the Glaucoma test for an 8yr old. Sheesh!

The Doctor was great speaking to Maddison and explaining all the tests. She calmed down right away when she realized we weren't going to blow her eye out. I really liked the Doctor until he asked me "if Maddison's Diabetes is controlled." All I could think was OH GREAT. His idea of "controlled" and the reality of a child with Diabetes is two different things. I felt totally stressed from that one question, and I knew the A1c question was coming.

Doctor: "What was her last A1c?"

Me: "7.3%"

Doctor: "ohhhh, thats really high."

Me: Thinking WTF!!?? Do you know how hard a parent works for an A1c!!!!??????
I was SHOCKED by his response. I almost dropped dead right then and there. Is he kidding me? Does he know that Pediatric Endo's are pleased with anything under 8%???

Doctor: "Once you start to get up that high and into the 8's you will see alot of vision fluctuations"

Me: Still can't speak

Seriously, I couldn't speak. I wanted to tell him that children aren't expected to have A1c's as low as adults. I wanted to SCREAM out that he has no idea what a "high" A1c is for a child. I wanted to cry. I wanted to hide. I felt entirely responsible for Maddison's recent vision issues and headaches. I felt like a total failure, and this guy doesn't even KNOW reality about children and Diabetes! Anyway, Maddison ended up with a very slight near sighted right eye only. Not enough to even correct with glasses. We passed on the dilated exam as the Doc suggested, it just wasn't necessary.

The end result is this: Lower Maddison's A1c to an "acceptable" range to avoid any further vision disturbances and headaches. Try to better control fluctuations in blood sugar. Doctors orders.

WOW. I walked out of that office today feeling like a total failure, when I know well enough that Maddison's Diabetes is in fact "controlled" to the best of my ability. Controlled quite well for a child, per the ENDO that actually assures me I am doing a good job. The ENDO that KNOWS Diabetes and children's acceptable A1c ranges. I have to keep reminding myself of that! I agree that Maddison's recent vision issues are probably related to running too high the last 2 weeks. But thats 2 weeks. I can't feel like I've "hurt" her because her blood sugars are wild and changing lately. But, I do after listening to this doctor today. Punched in the stomach. Lost my breath. Stabbed in the heart. I know these are all just words from an eye doctor. But it feels like so much more than that. To me, it is more than just words.


Wendy said...

You're sooo's sooo much more than words.

I felt the same way at Addy's GI appt when they went on and on about how "uncontrolled" her diabetes is...meanwhile I was there to begin our celiac journey. I just wanted to scream.

I take it personally. Maybe I shouldn't, but I do. I work DANG hard -- and I expect people to recognize that!!!!!! It's an insult when someone goes off on a tangent about how "uncontrolled" things are. I'M DOING THE BEST I CAN!!!!!

They don't get it. No one seems to get it. And it's so stinkin' frustrating.

You're doing a great job!!! I'll bet you anything that Maddison would agree with me :)

Anonymous said...

i saw your comments below...going to the right endo expert can really help...also, if you think you have precancerous tissue, you can google it and take things like folic acid and b vitamins - there are lots of stories where it worked

progesterone - natural , compounded can also help - it can also help with the problems of endo and other issues

google women's hormone pharmacy and then go to the section of ask a pharmacist - or also go to or and search for their sections on natural hormones

you can get free or minimal fee records reviews at endo experts' sites - it's worth it

a hyst will not cure you of endo, and if the endo is not excised properly, it will remain! and cause problems! or is it .org?

the endo diet can help with a lot of things

Anonymous said...

there's a difference in doctors and types of surgeries - an ob/gyn will try to laser or do some burning of endo - they don't know all the locations, forms and stages of endo

an expert knows so much more about what to look for and where to look, and how to remove - excise - endo , esp at the roots, in all kinds of delicate area

i wish i had known of this years ago - it's helped a lot

i think has info on fighting precancerous cervical cells, many people do

it does work!

i've seen a lot of stories of women having hysts having depression they didn't expect - and not getting pain relief if they go to the wrong doc

Anonymous said...

one more thing, lol

natural progesterone can help with breast issues also

Scott K. Johnson said...

Major suckage. Sorry to hear that the doc was not very compassionate. Those of us with diabetes need all of the compassion we can get, and you mom's of kids with diabetes need three times that amount.

Hang in there K!