question marks

November 10, 2006 at 5:49 pm | In Uncategorized |

Once again you are acting unwell/ in pain and we don’t really know the source.  First it was gagging, regurgitating and eating obsessively.  We tried a course of Diflucan thinking that it was esophageal yeast again.  Some improvement immediately and then you started with pain episodes.  Frenzied pacing, breathing hard, racing heartbeat, sweating and grunting in pain.  We’re trying to figure out if you need to see Dr. Fox in Boston again for a dilation and maybe some testing.  Now you have developed a significant cough so maybe you just had a cold coming on and were uncomfortable with that.  Maybe you do have an obstruction and aspirated food and have pneumonia.

 That’s the biggest problem with you…the question marks.  The not knowing what’s going on in there.

Knowing how quickly things can get fatal with our kids it’s hard to not get swept up into feeling everything is an emergency.  I hate to overreact but would hate more to underreact.

7 Comments »

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  1. Beth, hope Will is feeling better soon. It’s so scary when they are sick or in pain and just can’t tell us what’s going on. I’ll be keeping you all in my thoughts.

    Sandi

    Comment by cdlsva — November 11, 2006 #

  2. Thanks Sandi! The frustration of knowing there is pain somewhere but being unable to find out where or how to make it better really sucks. It’s probably the one thing I hate about CdLS.

    Comment by bethsmiz — November 11, 2006 #

  3. Hi Beth,

    I hope Will is feeling better. I agree that it is so scary not knowing what is bothering them. You have many more years experience of that than I do. I hope it gets easier. Caitlin also sees Dr. Fox in Boston. Please keep us posted on how Will is feeling.

    Sara (mom to Caitlin)

    Comment by sgisti — November 13, 2006 #

  4. Thanks Sara.

    We love our docs at Boston Children’s. Dr. Fox is so knowledgeable and is always ready to lend a hand when we need him. We just don’t have luck here anymore with testing and procedures. We do everything we can in Boston.

    Will had a better day yesterday. Finally stopped the frenzied pacing. Actually smiled and played. I’m taking him to our family doctor today to have him listen to his lungs. His cough is horrific.

    Comment by bethsmiz — November 13, 2006 #

  5. Hi Beth,
    Hope Will is doing better and that the problem was just a cold.
    - Karen.

    Comment by kfb1 — November 15, 2006 #

  6. Beth,
    We are going through something similar with Marci. She is finally getting a little better, but not enough to even admitt that she is improving yet. She is not gagging as much, but she will not eat. She will take food in her mouth, chew it up, then spit it back out. This is all the result of a horrible infection she had. The large doses of strong antibiotict is my suspected cause. The doctors are working on a solution, but it is nerve wrecking to see her like this. I know where you are at. Hang in there! Many good thoughts sent Will’s way.

    Vicki

    Comment by cdlsohio — November 15, 2006 #

  7. Vicki~ We were trying to remember today if it was Marci who has also had problems with esophageal yeast. I heard from another CdLS parent today about her daughter who has recently been diagnosed with esophageal candida. For some reason Marci came to mind as another possible kiddo with this problem.

    Comment by bethsmiz — November 15, 2006 #

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