"Suffering the Slings and Arrows of Outrageous Fortune"

Yesterday we saw the wonderful surgeon who did Em’s appendectomy for a follow up appointment. And she was still wonderful.

First, we saw a young doctor – probably a surgical fellow – who works with Dr. West. Emphasis on ‘young’ – he didn’t look much older than my 16 yo son, so that was kind of funny to me. However, he was very nice and gentle with Em, so he got points from me. But, it was when I brought up mast cell activation that I decided I really liked him. When I told him about Em’s suspected mast cell disease and that, because surgery is a known trigger, I thought it had really stirred her mast cells up causing a lot of her current problems, he totally agreed and said that surgery was a major activator of mast cells. No rolling of the eyes, no snorting, no perplexed look while trying to remember exactly what mast cells are. Very refreshing.

Then, Dr. West came in and talked to us. Em’s incision is looking good and healing well – better than any of us really expected, I think.

But the ongoing GI issues and the fact that she continues to lose weight are concerning. She has lost at least 10 pounds, maybe more like 11 or 12 and most of that in just the last couple weeks. Dr. West thinks a lot of her pain and poor appetite is from the constipation so we are going to work on that. Miralax twice a day for a week and see if it helps, if it does, we can bump down to once a day. Regardless, I am to call Dr. West in a week and let her know how things are going and we will decide from there. She hopes to not have to see Em again, but will if necessary.

I remain impressed with this surgeon and would choose her to operate on my kid if it was ever necessary again.

On the Mast Cell front: On the way home, we stopped to eat and Em had a major reaction. She had not taken her Zyrtec and Zantac yet and just started feeling awful after eating a little. She ended up taking her Zyrtec and Zantac and then took a Benedryl when she started feeling like she was going to pass out. After the Benedryl, she eventually perked up but felt pretty rotten the rest of the day. Of course, she had to get up at 7 to get ready to go that morning and had only had about 6 hours of sleep, so feeling rotten was a given.

It is hard to believe that we are a month past surgery and that Em is doing as well as she is. The mast cell stuff and the weight loss is concerning, but hopefully we will be able to get her appetite going again if everything else settles down. Knowing we have a caring, knowledgeable doctor on our side is a great comfort – I feel less alone in dealing with all of this now which is a pretty cool thing!

 

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Comments on: "1 month post surgery" (3)

  1. Karen said:

    Hi Beth,
    Glad to hear Em is healing so well after the surgery. That is good news!

    I hope Em does well with the Miralax. Amanda could not tolerate it, so we had to move on to another long path of other things to try. But, sounds like you are pretty sure Em has mast cell issues where Amanda’s immunologist feels confident he has ruled that out. He definitely diagnosed her with an eosinophilic disease based up GI biopsies. So, maybe Em and Amanda are dealing with two totally different conditions but both suffer from the constipation.

    Good luck and take care.
    Karen

    • Hey Karen,
      The Miralax seems to be working already and she has only had a little bit. So, I am hopeful that it will address the problem without much fuss. (Well, there is quite a bit of fussing from her about taking it, but otherwise I hope it helps efficiently.:-)) I wouldn’t be surprised if Em doesn’t have both mast cell and eosinophilic issues, tbh. She seems to have the classic mast cell signs but there are some other issues that very well could be more eosinophilic related from what I read. I am really hopeful that Em doesn’t end up with the serious end of the EDS GI issues – it is so complicated and there is so much to worry about. I hear about kids like Amanda and my heart breaks. At least you have doctors that are working with you and getting you answers. Slowly, I know, but at least maybe there are solutions on the horizon for Amanda.

      (BTW, I will respond to the other message you sent me soon – I promise!)

      Thanks for commenting – will be thinking about and praying for you and Amanda!

      Beth

  2. Karen said:

    hello…just re-doing this as I forgot to check the box for notifications of responses…sorry…

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