"Suffering the Slings and Arrows of Outrageous Fortune"

Invisible Illness Questions

If you have questions about living with an Invisible Illness or what being a medical zebra is all about, feel free to post a question in the comments.

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Comments on: "Invisible Illness Questions" (2)

  1. Vicki Orvis said:

    First – let me thank you and your family for being so open and sharing about your struggles with invisible illness(es).

    My 11 year old daughter was recently diagnosed here in Greenville, SC with Eosinophilic Esophagitis. She has undergone allergy scratch testing again (last tested at 15 mos. old). Shayla literally tested allergic to all foods but almonds! Her initial scope went very well, no side effects or pain but the pictures they showed me of her esophagus left me speechless. She had rings/banding in addition to “rail road” tracks plus many pussy sores – no wonder she could barely swallow food let alone a drink. Shayla was placed on a steroid “slurry” of Budesonide twice daily for 1 month, yet it didn’t seem to be healing her throat – she was still choking/gagging. So we continued it for a second month on Budesonide, began her first food elimination diet with her strongest allergic foods first (wheat, oats, rhy, tomatoes, peaches, natural flavoring, chocolate, eggs, shell fish and cashew nuts). She was scoped again at the end of the month. Results were amazing! Her esophagus was fully healed by the steroid and food removal. So now we have a base line of zero eosinophils! The true test begins – they took her off of the steroid and we’ve remained on the diet. It has been about two months and we’re beginning to see symptoms again and they are becoming more frequent. Her next scope will be early October and her next foods to come off the menu will be even harder: dairy, pork, bananas, maybe beef too. I’m seriously concerned about her nutrition intake if we remove these foods as well. I am on the APFED.org discussion board as “scEoEmommy” – it is a fantastic site and a great wealth of info shared there. If you join please friend me! I’m happy to help you and Em find recipes, support, etc. should she test positive for EoE.

    My main reason for writing is that my daughter (using hindsight) and I both seem to have EDS according to all of my research.

    I too was a former gymnast and cheerleader and had to drop out after locking-up both wrists, dislocating both wrists, the hyper extending both elbows, etc. Needless to say my Mom pulled the plug – which I hated then, but I’m wishing she did it sooner now, LOL. My entire body is in severe pain daily and I’ve been diagnosed with Fibromyalgia, Poly arthralgia, Degenerative Disc Disease of my c-t-and l spine, chronic fatigue syndrome. I’ve also been diagnosed with Non-alcholic Liver Disease (3 years of up/down liver panel testing) although my GI can’t explain my right flank pain; and neither can any of the other 3 Dr.s he has passed me along to. I think it has to do with my rib cage movement and lack of structural support for my liver = unbearable pain while sitting or standing. I once broke a rib just by sneezing while driving with a seat belt on. Needless to say, my career has met an abrupt end. I’m no longer super mom, or independent – I’ve lost everything due to illness including a husband, step son and my home. We’re now depending on my aging parents, when I should be taking care of them. We’re blessed to have a caring supportive family; but I still mourn the loss of my former self.

    Meanwhile, my poor young daughter has also been suffering with pain, pretty much as you described since she could walk, began with knees, legs, muscle strain/tears, Achilles tendon tear, ankle slippage, and painful “popping” in every joint, mystery bruises. Her cervical and lumbar spine are the worst daily pains to endure.
    She has not started her menstrual cycle, but has major emotional highs (giggle fits) and bouts of crying. Some girly hormonal changes are occurring while others are not, she also has allot of hot flashes, dizzy spells – so I believe her hormones are off kilter too. We see an Endocrinologist next week.

    When I brought these pain and hot flash issues up to her GI Dr. she literally laughed at me and said it has nothing to do with EoE, and she refused to check her for mast cells!

    I know for a fact all of this is connected/intertwined – as you’ve discovered as well.

    Grenville, SC has very limited and poor medical care – especially for these invisible and rare conditions. I noticed you’ve had good luck at Cincinnati Childrens’. Could you please let me know how to schedule/coordinate a trip up there to visit Dr. Abonia and Dr. Garza and possibly a good knowledgeable genetic testing group? I’m curious if Childrens’ would also evaluate me at the same time – who knows!

    Also, is your daughter home schooled or attending school online? I have a feeling our days in middle school will soon need to end – too much pain and exhaustion. I’d love to know what program you (and others) have found to be flexible and easy to access, etc.

    Thank you so much for reading our story and any help you can provide! We’ll pray for you and Em lost in Un-wonder land!

    Sincerely –

    Vicki Orvis
    scEoEmommy

    • Hi there!
      Sorry to hear that you and your daughters are struggling with what certainly sounds like EDS. I can validate your thinking that EoE is connected with EDS. Dr Abonia is convinced that there is a connection because he sees it firsthand. Cincinnati Childrens would be a good place for you to travel to and, theoretically, they should be able to schedule all of your appointments – should you want to meet with more than one doc – in one day or at least the next day. They at least try to do that and they would definitely work with you on that.

      The geneticists at Cincinnati are knowledgeable about EDS and they see both children and adults in the connective tissue clinic. You can get an appointment with either Dr. Derek Neilson or Dr. Elizabeth Schorrey. They replaced Dr. Tinkle when he left last year and he trained them, so they are pretty good. They will refer you to whatever specialists you need and will follow up regularly to help manage your case. They also are willing to help educate your local doctors on EDS.

      I guess the best place to start is to call and see if you can get an appointment with Neilson or Schorry. Then, they will decide if you need to see any other specialists. Unfortunately, Dr. Garza has recently left and I have not heard about who can take on the role of motility specialist there. You call 513-636-4760 to schedule an appointment. When you call, you probably can also request to talk to one of the genetic counselors to explain your situation and get some feedback on how to handle scheduling multiple appointments with multiple specialists. I know they can do it – I just haven’t experienced it myself so I can’t guide you through. I can say they – pretty much anybody we have ever dealt with at Childrens – are friendly, nice, and helpful so I would expect them to be easy to work with.

      Regarding homeschooling, we homeschooled before Em got sick but I know a lot of EDSers who choose to homeschool just because it is easier on the kids than trying to go to school. I get the impression that the doctors at Childrens don’t like that and they tend to try to get kids back in school but they haven’t messed with us because it is a philosophical decision not based on health. We have always just chose our own curriculum that works. We have never done online school – again, primarily because it doesn’t fit with our educational philosophy but I also don’t think my daughter could handle the course load – the busy work and the deadlines. But, I know it is a legitimate choice for families new to homeschooling for health purposes. I think the best thing you could do is search out your local homeschoolers and see if they can give you suggestions. Homeschoolers tend to be pretty knowledgeable when it comes to finding the right curriculum and are almost always willing to answer questions and support a newbie. Do a google search for your county homeschooling group, perhaps ask at the library or even your school. Or, if there is someone you know who already homeschools, they should be able to point you to the right people who can help you.

      Good luck – hope this helped a little!
      Beth

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