"Suffering the Slings and Arrows of Outrageous Fortune"

We drove through some very nasty weather to Em’s allergy appointment on Friday – we were crawling along at 10 mph on the interstate much of the time and there were cars spinning out around us, but we made it just on time.

It was an important visit – following up after the endoscopy and figuring out where we need to go from here, so I really didn’t want to have to reschedule and wait a few more weeks to discuss the endoscopy.

Unfortunately, Dr. A did not have the endoscopy report to be able to look at. So, we were sort of left in limbo. However, the fact that I reported that Dr. Croffie found nothing, other than the low lactase level, was taken on board. For now, until he gets the reports from Croffie’s office, he is assuming there is no eosinophilic esophagitis. He wants to see both the written report and the pathology report – if he is in doubt, he will get the slides read at Cincinnati. But, until something changes, he is assuming it is not EoE.

Which leads us to the ‘fortunately’ part… If it is not EoE, what is it? I did not want to pipe up and just shout out my lowly little opinion but I was determined to somehow get mast cell on the table. So, we just tried to answer his questions honestly and as thoroughly as possible.

When he focused on the flushing, Em pointed out that the flushing itself is not bothersome, it is the tachycardia, syncope, and nausea that goes along whenever she flushes. That got a moment of thoughtful silence.

When I mentioned that the lactose intolerance was the least of her problems, he asked what her biggest problem is… I said, probably the reactions to food that she has, oh and sometimes it isn’t just food, it is weird reactions to environmental triggers too. Another moment of thoughtfulness. He finally asked which foods are problems. We gave him the list of foods that are problematic, most of which happen to be high histamine foods. He actually said the ‘h’ word when we talked about canned tuna being a problem.

Right about then, I knew he was following our trail of crumbs and we were finally heading the same place. When he talked about tryptase levels and that doing the tests over would probably still end up with a negative result, I knew he was thinking mast cell. He never actually said mast cell, but clearly is thinking along those lines.  We all agreed to discontinue the Singulair, since it isn’t helping in any noticable way.

Basically, he left it that he was going to have to take some time to think about which direction he wants to go, to decide what meds he can try that might help. So, I am to call Dr. Croffie about the reports and then later this week give Abonia a call to find out what he has decided.

So, we actually accomplished little and yet, I feel like we got more done than ever before. And I feel like we may be getting somewhere. Finally.

 

Advertisements

Comments on: "Productively Unproductive" (10)

  1. Not related to this post, but I wanted to thank you. A while ago, you mentioned the “Strutz” things and I got myself a pair over my Christmas break. I’ve been using them for about a week now. Having an arch is a really strange feeling…even after I take them off, it stays in place for a few minutes and not feeling the floor under that part of my foot is odd. My entire body is realigning, but this is the first arch support that has actually given me an arch, so thanks for the suggestion!

    I hope this doctor works with you! It sounds like it might work out…good luck!!

    • Glad the Strutz helped! I think Em had the same feeling about having an arch – the first time she put them on, she stopped and had to figure out what that weird feeling (having an arch) was. The look on her face was kind of comical!

  2. Kerissa said:

    Hi Beth,

    My name’s Kerissa and I’m 20 years old. I live in Beaverton, OR, and am dealing with EDS, CRPS, and POTS.

    I’m currently in the process of being referred to Cincinnati Children’s Hospital’s EDS clinic because I started experiencing a drooping eyelid, left leg weakness, and severe headaches. My doctors here are stumped. I’ve visited your blog several times and read that your daughter has seen a doctor(s) there. I was just wondering if you could tell me how helpful the doctors are to your daughter’s case. I really hope they can give me some answers when my family and I head over there.

    Thank you so much,

    Kerissa

    • Hi Kerissa,
      Sorry to hear that you have to travel to try and find help for your symptoms – and I do understand how debilitating they are!

      My daughter originally saw Dr. Tinkle while he was at Cincinnati Children’s, but he has moved to Chicago. After he left, Dr. Neilson and Dr. Schorry (sp?) took over. We have seen Dr. Neilson once and will be following up with him in April. We liked both Dr. Tinkle and Dr. Neilson. Dr. Neilson is compassionate and seemed to approach things as problems to solve, so maybe that attitude will be helpful for you.

      Also at Cincinnati Children’s, we have seen an Allergist – Dr. Abonia – and we like him/ find him helpful. We saw a GI motility specialist – Dr. Garza – and we really liked him.

      We saw the pain management doctor there and, um, well, I don’t highly recommend him. If he is all you can get, he would be worth a try, but we are not the only ones who have had issues with the pain management doctors there. Hopefully, you would be able to find someone much closer to home for pain management so it wouldn’t be an issue, but I just wanted to put him on the list.

      Also, we saw a headache specialist there and she was beyond horrible. Unless you actually have migraines, the headache center will probably not be very helpful.

      I don’t know if you are looking at the Driscoll Theory regarding your symptoms, but if you have read many of my posts, you probably know that my daughter benefited hugely from Diamox and Zyrtec and Zantac. Dr. Tinkle was very much against the Driscoll Theory when my daughter was still under his care. It is possible that he has changed his mind about it, but I would have no way of knowing. We didn’t bring it up with Dr. Neilson (I was kind of chicken about it) but he seemed to be pleased to find out that my daughter’s headaches were managed with the Diamox. So, I don’t know what he would think if approached about it in a case like yours. Just from what you have described, it might be worth looking into to see if the symptoms fit and try to get someone to allow you to try a trial of Diamox. If not, hopefully, either Dr. Neilson or Dr. Schorry will be able to help you figure out what is going on. I have heard great things about Dr.Schorry and can vouch that Neilson is a good listener and a problem solver.

      Good luck – I hope that whoever you go to can give you answers and that you start feeling better soon! Let me know how you do or if you have any other questions.

      • Thank you so much for your feedback, Beth! 🙂 That’s really helpful! And I’m really glad to be in touch with someone who’s been to Cincinnati. I will definitely let you know how things go!

        • Glad to be of help! Do let me know how your visit goes!

          • Hi Beth!

            Just got back from Cincinnati Children’s Hospital this past Saturday. 🙂 All my appointments went really well! And it looks like we’re finally getting answers after waiting months. I saw Genetics (Dr. Schorry), Neurology, and Pain Management. Dr. Schorry is wonderful! I’m so glad I saw her! I’m still dealing with left leg weakness, muscle jerking, a drooping eyelid, nystagmus, fatigue, etc.

            All the specialists I saw agree that I have some form of Mitochondrial disease. I got 5 tubes of blood drawn to check my lactate level and look at my mtDNA for deletions, etc. My lactate level is high (which can indicate Mito). I won’t get results on the genetic blood work for a while as it can take up to 8 weeks.

            In the meantime, Dr. Schorry gave the names of a couple of experts in Oregon who specialize in POTS and autonomic nervous system dysfunction.

            The pain dr. I saw was really good also. She is referring me to a 3 week inpatient pain rehab program in Cleveland, Ohio! But of course, that won’t be for a while as I need to improve more first if I do in fact have Mito. And, we’re still deciding if I should go to that particular program or the one at Mayo Clinic or John Hopkins.

            Anyway, I’m just so thankful that I’m getting more answers for all these symptoms! 🙂

            Kerissa

            • That is great – making progress is such a relief! So glad you had a good experience and it was a worthwhile trip. I am very interested in what you find out about mito – I am more and more convinced that Em is dealing with mito too. I chickened out when we recently saw Dr. Neilson and didn’t bring it up. But, it is definitely on my list to talk about to all of our doctors and hopefully Neilson when we see him in six months.

              One word of caution, be careful of the pain rehab programs. I have heard some really bad things about them from others who have gone. If it is a one size fits all program that treats all pain disorders and doesn’t specialize in EDS, it could cause more problems than it fixes. The pediatric boot camp at Cincinnati is EDS specific and so is really targeted and is effective,but other programs expect you to participate in everything – like stretching, even though it is counter-indicated for EDS, etc – no matter your situation. If you don’t participate or can’t because of POTS or fatigue, you get labeled non-compliant. Worse, their focus is convincing you that your pain is not real and it is in your head. Both Cleveland and Mayo have been bad about this, I hear. Like I said, I don’t have personal knowledge, but there are numerous threads about this kind of thing on Inspire. Before you agree to go, I would suggest searching the discussions on Inspire and even starting one of your own to get answers about it. It sounds like it is not imminent or anything, and I don’t want to burst your bubble but I would hate for you to get pulled into something that might halt your progress.

              I am really glad that you are getting answers and that you saw people who are going to be able to help you. Let me know how it goes!

              • Thank you so much for filling me in on the pain rehab programs! I would never have known! I will definitely do more research about them. It looks like I won’t be doing Cleveland or Mayo anyways because it’s a little too far away from home..

                I will definitely let you know what we find out about mito. 🙂 What an adventure this has been!

                • I hated to rain on your parade but I have heard such bad things about the two you specifically mentioned that I couldn’t not say anything! I am sure you can find something that will help you! Having good people on your side is a great start – and that is what you now have.

                  I would appreciate it if you keep in touch about mito – I have a feeling that it is a big part of the puzzle for a lot of EDSers.

                  Good luck!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: