"Suffering the Slings and Arrows of Outrageous Fortune"

Fingers Crossed

Well, tomorrow we head down to Cincinnati Children’s to see Dr. Abonia, mast cell specialist. I am getting progressively more wound up as the hours wind down. I spent the day printing off info – symptoms, triggers, etc to share with him. I am devoutly hoping that I don’t need to provide the requisite articles on MCAS, since he is an alleged expert.

I am actually pretty optimistic because I have heard very good things about him, but I am just not able to fully trust until I see his expertise in person. If tomorrow’s appointment is bad, I will be terribly, terribly disappointed but that is nothing new.

At any rate, I am thinking positively until I have reason to think otherwise, so… I fully expect to come away tomorrow with at least a presumption of MCAS and hopefully additional treatment options. I won’t be surprised if her ‘POTS’ symptoms are labeled MCAS (nor will I be upset) and I won’t be surprised if the possibility of eosinophilic esophagitis is investigated.

We have waited a long, long time for this appointment and I am praying pretty hard that it is worth the wait. Will update sometime tomorrow with (hopefully good) news.

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Comments on: "Fingers Crossed" (5)

  1. I hope all goes well, I’m crossing my fingers for you!

  2. Michelle said:

    Praying your appt goes well. I have taken my daughter to Dr Abonia as per Dr Tinkle. His seems very intelligent, but hasnt had the answers we need yet. Meg doesn’t have full blown Mastocytosis or enough evidence to prove MCAD that will actually show up on a test. She has issues with EE but not severely. As of right now he is classifying her as Mast cell related issues and prescribed zantac/ zyrtec as well as Nasal Chrom sprayed down her throat for the EE trouble.

    Not sure who you will see gi wise- but we have seen Dr Garza for over a year. He is the one who recommended we go to Nationwide for the gastric pacer that has made such a difference for Meg’s gastroparesis issues.

    Let me know if you have any questions, or just want to talk.

    Michelle (KY Farm Mama on Inspire)

    • We are seeing Dr. Garza too – I am anxious about our upcoming appt but your comment and Dr. Abonia confirming that Em needs to be seen there has made me relax a little! I am really happy that Abonia and Garza will be working together to make things better for Em.

      We definitely liked Abonia – now we just have to be patient while he helps us figure out what all is going on!

      How is Meg doing after her surgery? Sounds like it went well…

  3. Michelle said:

    Beth,
    Megan’s surgery has made an amazing difference for her. The pacer was places June 6, so we’re approx 5 months out. She hasn’t used her wheelchair in over a month. Tomorrow will be 6 weeks since she passed out.. The gastric pacemaker has been life changing for her. Saw your post abt Dr Garza- glad you like him.
    thanks for putting me in touch with Karen McCann. We as moms and our girls have so much in common.
    Glad to hear there is improvement with Em.

    • So glad Megan is doing better – haven’t seen her on Inspire for awhile, so I was hoping for the best. Glad you and Karen got in touch! Dr. Garza was pretty awesome – probably our favorite doctor yet.

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