"Suffering the Slings and Arrows of Outrageous Fortune"

Home from Em’s neurology appointment…

One of the main things I wanted to talk to him about was her eyes and her weird dilation episodes. When we saw the opthamologist a couple weeks ago, he didn’t seem particularly concerned about it. I mean, he at least didn’t act like it was an emergency but he was concerned in a bewildered sort of way. He wanted to see her back fairly soon to check her pupils and told me to call if it happened again. (Which it has and I haven’t, but only because we were seeing neurology and I am trying to get video when it happens so  the eye doctor has something to go on other than my word.) The weirdness doesn’t seem to cause a problem beyond making her a little more dizzy, have more difficulty focusing and more light sensitive. And some double vision, which apparently is a thing.

So, the neurology PA is concerned enough to talk about a referral to a neuro-opthamologist and is ordering an MRI.

Urgggh.

Part of me thinks it is a total waste of time and is overkill – she just had a brain MRI 2 years ago, but maybe it is necessary and will show something important. I mean, ruling out tumors is important, right? I am half way tempted to call the eye doctor and get his opinion of having an MRI. If it needs to be done, obviously we should do it… But, if it is just an overreaction, I hate to go forward with it.  I know it is going to be ‘normal’ (or maybe I just want it to be).

I just don’t know… But, it is scheduled for April 26th, so I guess we will wait and see. I am usually all for taking things seriously and getting imaging to rule things out, but I am really on the fence with this one.

I did ask about mitochrondrial disease today – Brian is very easy to talk to and is always willing to listen to whatever [seemingly]crazy theory I am onto at the moment. He knows next to nothing about it, certainly no details that are helpful in our situation. But, he doesn’t think I am crazy for thinking about it and even offered to refer us to someone if I wanted. I told him we would hold off while I talked to the rest of the doctors about it. It is now officially mentioned in her medical record, so maybe we are eventually going to get somewhere. It is a start.

Got blood work drawn to check thyroid and Vitamin D levels, so will wait and see what happens there. And we are waiting to hear exactly when the gastric emptying test will be scheduled.

We have been checking Em’s blood sugar per the GI docs suggestion – worried about hypoglycemia – and are getting a sense of a pattern. I have found all kinds of conflicting info online, but I think there is definitely something hinky going on. Probably something along the lines of reactive hypoglycemia, although it is weird. Weirdness is no surprise, though, with this child. I should just write a whole separate post about this part, but suffice it to say that we are on the trail of something.

So, we are doing as Dori says and will just keep swimming.

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Comments on: "Sigh… an update" (6)

  1. Always a hard call whether to spend the energy to check a symptom that your gut says probably isn’t going to warrant treatment, but in the whole big picture- all that data adds up.

    Abby has reactive hypoglycemia at times- it seems to flare when her dysautonomia symptoms flare- no idea if they are connected but for Abby they seem to be. She also has steroid diabetes. a dose of steroids to do a CT scan sent her sugars skyrocketing. This is a newer issue. She took steroids a few times when she was younger with no issue.

    You guys do a great job with the food- I know with Abby she works hard to add protein with simple carbs and complex(when her gi tolerates it)to help steady her blood sugars..

    • I will post about the hypoglycemia stuff more thoroughly soon, but the pattern we are seeing is so odd. It is reactive in the sense that a couple hours after eating, she gets symptoms. The lowest reading we have seen is 85, which isn’t technically low, but seems to be for her and she clearly has symptoms. And it raises when she eats and the symptoms resolve. But, what is weird is a meal with a fair amount of protein dropped her sugar level, but a meal like pancakes and syrup doesn’t. So, maybe it isn’t reactive hypoglycemia but it sure acts like it except the amount of sugar seems to not be the answer.

      Maybe it is more connected with the autonomic symptoms… And, protein is an issue. Peanut butter, usually yes; meat, almost always a problem. Tuna is great except when she has a mast cell reaction from it. Eggs, same thing. I never knew food could be so complicated!

      Thanks for sharing – I appreciate your input!

  2. Arlene said:

    Hi there,
    I am a 45 yo mom with EDS. I was a competitive athlete and my health has been a rollercoaster since age 35. From reading this blog and knowing my systems and have been to every specialist, I think this could be dysautonomia symptoms as well. I have started taking allergy pills for this and it does help.

    • I think you are probably right – Em definitely has widespread autonomic symptoms and the dilation thing probably is part of it. Although, she has been dealing with autonomic dysfunction for several years now and this dilation thing is new. She has been on Zyrtec and Zantac for 18 months or so and it really helped her over all symptoms but this has come up just in the last couple months, so who knows. I guess it is prudent to make sure there are no other causes before we assume it is just dysautonomia. I really was assuming it was, but both the neurologist and opthomologist seemed much more concerned than I expected, so I guess we have to investigate just to make sure.

      Anyway, glad to hear you are getting some relief from your symptoms! Thanks for commenting!

  3. We went through something very similar with Jonathan’s eyes two years ago. He ended up having a brain MRA and everything came back clear. Within a week or so, his symptoms disappeared. At least those symptoms did. Of course, EDS is a sneaky, pervasive disease that causes so many other issues as well. Now we schedule an eye appointment along with his heart appointment and ortho appointment.

    • Oh, EDS is SO sneaky, isn’t it? Emily’s MRI is clear too, as expected – I haven’t yet posted about it, but hopefully will today. But, her eyes continue to be odd basically every day so I guess we will now need to go back to the opthamologist. He didn’t want to wait a year to see her. I don’t think it is a big deal, but I guess we should continue to rule out the bad stuff. I am still convinced it is the dysautonomia causing it, but we shall see.

      Thanks for commenting!

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