Tuesday, February 15, 2011

Searching

I'm searching for answers. I've felt that there is something more than the typical "she has Down syndrome and Diabetes and is more prone to illness" reasoning for Em's string of colds/sinus infections. Last year her back to back colds were worse than they had ever been. Worse meaning that she got sick too soon after the last round of illness and each time the length got longer. This year I'm seeing the same thing. Back in October of this school year, I started bringing my concerns up each time we were at the Dr and each time we really didn't get anywhere. I decided to follow up with her Ear, Nose and Throat(ENT) Dr and feel glad that I did. He definitely agreed that we had a problem that needed addressed. My main concern I brought up with him was that we lived in our own version of the Bermuda Triangle. Emma has sleep apnea, Emma has Diabetes, Emma constantly battles upper respiratory infections due to her susceptibility. The respiratory infections make the sleep apnea a nightmare to deal with(meaning she rarely sleeps), the Diabetes makes it harder for her to fight these infections and in turn the infections make the Diabetes almost impossible to control. Her A1c level was recently checked and came in at 10.4, that's a huge jump from the last A1c and says a lot about how bad her Diabetes has been. When the longest time frame between these infections has only been 5 days, it's not hard to see why our family lifestyle is significantly altered right now. I understand that she is more prone to illness and that all of the things on her plate(Diabetes, etc) complicate things. But, I also feel like something can be done to make the quality of life for her and our family a little better. I just don't know what yet.

Her ENT asked a bunch of questions and was particularly interested in the points I made about how her respiratory illnesses always start 3-5 days after the last illness and she's the only one sick in our household. I was hoping there could be a magic fix and things would get better fast(ha ha)but he would barely talk about surgery on her sinuses as an option. I always thought that Emma was getting colds and then they were turning into sinus infections. But, he thinks that she might have an infection deep in the sinus cavity/cavities. Even though she's been on antibiotics multiple times, he thinks that she wasn't on long enough for the infection to be fully treated. So instead of colds turning into sinus infections, we might be dealing more along the longs of recurrent sinusitis. So the plan for her is to follow a 6 week course of antibiotics( I think it's a lower dose each day so the length of use could be extended). He's going to have a Ct scan of her sinuses done at the end of the 6 weeks to look for blockage or the lingering infection. If the scans show significant infection or blockage still, she will more than likely need sinus surgery. He also referred us to an allergist/immunologist. We go next week for some testing.

We don't exactly have answers, but I'm glad that we are at least on the right track to finding some.....

3 comments:

The Jensens said...

My child has dravet's syndrome. He was having repiratory issues non-stop. He also had apnea in his sleep. We were in the hospital a ton because the respiratory illness would trigger seizures. We did a swallowing study and found that he asperates when he drinks. Since then we thicken his drinks and he has not had a problem since. I thought that might be helpful, but whatever it is I hope it clears up for you soon.

Adriane said...

:( I hope you can get some answers soon!! I hate the guessing game!!

Smilen Champ said...

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