"Suffering the Slings and Arrows of Outrageous Fortune"

Also known as:

Em Has Come a Long Way in 4 Years

4 years ago, Em had badly dislocated her knee. We were waiting for an MRI, Physical Therapy and an explanation, still blissfully unaware that her life had changed irrevocably.

3 years ago, she had spiraled downhill and by the end of the summer was profoundly debilitated by dysautonomia and was headed for even scarier times.

2 years ago, we were desperately waiting for a neurology appointment that would either make it possible to try Diamox or not. (It did and the rest is history.)

1 year ago, Em was still recovering from her appendectomy, having lost more than 20 pounds and struggling mightily with gastroparesis symptoms.

 

Last night, Em auditioned for a part in The Sound of Music.  Let me repeat that: Last night, Em auditioned for a part in The Sound of Music. She walked up on stage, she stood for probably 2 hours give or take a few minutes. She sang alone for the musical director. She danced. She faced down her anxiety. And auditioned.

Will she get a part? Probably not, but it doesn’t really matter – that she was able to actually participate in the audition process is practically a miracle.  When I saw her up there with all of the other kids, I teared up, knowing what she has been through. No one there knew what she has lived with or the challenges she faces. Oh, we know many of the people who were involved and they may have a vague understanding that Em has been sick. But, they only know the barest details and just saw a pale, pretty, quiet girl who was not quite as perky as the other teenagers on stage. Me? I saw a miracle and the bravest person I have ever known.

What she overcame to get up on that stage is significant… She has been very ill for a long time and has enough medical conditions to go on with.  Any one of those conditions is enough to bring the average person to their knees but she is not going to be defeated by it all. Yeah, the past 4 years have been tough, but she is overcoming.  Just her day-to-day challenges are big enough to overcome – and, sadly, that is with her being significantly better.

I don’t think it is much of an exaggeration to compare this child to Job. (You know, Job, from the Bible: Job suffered greatly – he lost his children and his livestock (and thus his wealth) and then his health was taken. He suffered profound agony as his body failed. His friends said he must have done something to deserve it. )

Yesterday morning, the day of the audition,  Em woke up with a serious stuffy nose and sore throat and her voice was shot. The hot lemonade and honey she drank to help her throat triggered a mast cell reaction and she was curled up on the floor in agony from the stomach pain. She was nauseated and struggled to eat the rest of the day. She had wrenched her ankle the night before and it was still very sore; she twisted the other ankle when she got up.  Her shoulder was messed up more than usual and that cascaded to the rest of her upper body joints so she was just a mess. She was exhausted before she even got up.

But, she was determined to audition. And she did. She could have focused on how bad she felt. She could have dwelt on how she has missed the last 4 years at the theatre, when it had become such an integral part of her life. She could have though about how unfair it is that during the years the other kids were honing their skills, she was bedridden.  But, she didn’t. She decided to step out in faith  and reach beyond herself.

She feels horrible today, of course. The cold she struggled with yesterday prevented her from sleeping well last night, after an exhausting 4 hour audition. She is in a lot of pain. Her SI went out and she couldn’t get it back in. Her feet hurt. Her head hurts. But, she accomplished something special last night. Needless to say, I am proud. And grateful for the progress we have made – progress that I thought completely out of reach a couple years ago.

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Comments on: "Job goes to the Theatre" (6)

  1. Shanda driller said:

    Can you remind me of what your daughter takes the Zyrtec or Zantac for? My daughter is awaiting meeting with the generic specialist at Cincinnati children’s for eds after suffering with a constellation of symptoms….the worst one being chronic stomach pain. I was just curious if these meds were helpful on treating that in your daughters situation and if so how much does she take. I figure it can hurt to try while we are waiting to meet with the genetic doctor. Thanks so much!

    • My daughter takes Zyrtec and Zantac for suspected mast cell activation. Not sure how much if any you know about it – basically, the mast cells are the allergy cells and they ‘misbehave’. So they release histamine and a bunch of nasty chemicals for no good reason – so kinda like an allergic reaction but not exactly. Food intolerances are a big issue with MCAS (Mast cell activation syndrome). High histamine foods are a big issue but any food can be a problem and it can vary from day to day. So, when my daughter eats a food that causes her mast cells to activate, she gets nauseated, bad abdominal pain, itchy, flushed and sometimes difficulty breathing. Daily doses of ZYrtec and Zantac help block this response. Zyrtec is an H1 anti-histamine and Zantac is an H2 anti-histamine. You need both to block a mast cell response. So, if your daughter seems allergic to everything and has crazy reactions to the foods she eats and the fumes or substances in her environment, a trial of Zyrtec and Zantac (Or other H1/ H2 histamine blockers) may be helpful.

      If she only has symptoms of gastroparesis/ constipation/ IBS, the Z/Z combo may not help at all. You can go to this web site to learn more about MCAS – http://tmsforacure.org/patients/mastocytosis_explained_6.php. Or, here is a post I wrote about MCAS and anaphalaxis, with a link to a great article about it – http://wp.me/p1mpA8-dw.

      FYI, two things that have been recommended for my daughter’s constipation/ gastroparesis type pain: peppermint oil capsules – one before each meal – and Iberogast. The latter is highly recommended by our GI to help with symptoms and is an herbal supplement with no side effects. Scientific studies have apparently proven it quite effective. My daughter hasn’t tried the Iberogast yet (we had to order it and should get here by this weekend and she will give it a try) but has used the peppermint oil capsules and they have helped a fair bit. They were also recommended by a GI familiar with EDS and GI issues. Just a thought…

      Hope this helps – good luck at Cincinnati! Who are you scheduled to see? My daughter sees Dr Neilson and we love him but I hear Dr. Schorry is great as well!

      Beth

      • Shanda driller said:

        Thank you so much for your reply. We too are scheduled to see Dr. Neilson in November. I have seen Doctor Tinkle myself years ago for very similar symptoms as my daughter. My cousin and her children have EDS and she referred me originally to Dr Tinkle. My daughter began suffering from intense stomach pain and nausea about 3 years ago. She is 15 now and her symptoms have multiplied from joint pain, rapid eye movements, constant itching, dizziness, hand and feet discoloration, bouts w hiccups multiple times a day….the list could go on and on. I would LOVE to be able to email you directly and learn more about who your daughter sees here in Cincinnati that have an understanding of EDS. Not sure if that would be ok w you or not.

        Thank you again for sharing your daughters story. It offers hope that there is help out there if we don’t give up!

        • Hey,
          Sorry it has taken me so long to reply…

          I think your daughter will be better off after seeing Dr. Neilson. I mean, it will be a long road but you have to start somewhere! Dr. Neilson seems to be very willing to take time to figure out what the problem is and get you to someone who can help you solve it (or at least address it!). It may take several visits to really get everything addressed and, as you already know, it is an ongoing problem but he really will talk to you extensively and try to help.

          You are welcome to email me – there is a contact box in the side bar of the ‘home’ page. Feel free to contact me through that, although I have been so busy I don’t always get a chance to answer as promptly as I mean to!

          I can tell you that we don’t exclusively go to Cincinnati for Em’s care. We have several doctors here at home who help us manage her care – neurology, pain management, PT and Opthamologist. We have a GI at Riley Children’s in Indianapolis. We loved Dr. Garza (motility specialist) at Cincinnati but he recently left and I don’t know who will be stepping in to fill those shoes – hopefully someone competent will.

          At Cincinnati, Dr. Abonia is a mast cell expert we have seen and it sounds like your daughter might benefit from seeing him. And we see Dr. Anderson at the Syncope Clinic and he seems good so far. We had mixed results with Pain Management but the issues we had might have changed since we were last there. And we saw a neurologist through the Headache Clinic who was beyond awful. One of our worst doctor experiences EVER and we never went back.

          If I can answer any other questions, feel free to email me. There is hope – I really didn’t believe that Em could get better when she was at her worst but, after a lot of hard work, she IS better. So, hang in there!

      • Shanda driller said:

        Thank you so much for all your replies. Last question for now. Exactly when does your daughter take the z/z combination and what is the strength oh each. I know we should just play the role of a doctor but that’s something I might try. I don’t think there’s much harm in taking the z/z combination too see if it provided my daughter any relief at all. Thanks again.

        • Em takes a double dose of both, per her allergist: 10 mgs of Zyrtec in the morning and at bedtime and 150 mgs of Zantac in the morning and at bedtime. When she started the z/z combo, it was without a doctor’s approval. No one would listen to me and I thought it was worth a try, with or without approval. We started with the recommended dose – 10 mg of Zyrtec and 75 mg of Zantac in the morning. We eventually increased her Zantac to the extra strength dose of 150 mgs, then the allergist told us to double it and add a dose at night. I would say, if you are going to give it a try, to start with one regular dose of each and see if it helps. For Em, it helped but eventually needed to tweak it so she got the maximum benefit from it.

          A regular dose *should* help enough to be noticed if it is going to. If it is going to help, your daughter should notice less itchiness, better food tolerance, maybe less dizziness and so on. It might take a few weeks to really see improvement and it might be gradual, although my daughter saw drastic improvement from the very first dose.

          I took the same attitude as you when we tried it. I was desperate and couldn’t get any doctor to listen. I will say, that in general, it is wise to consult a doctor when trying a new medication but sometimes it is just not possible. I no doubt that these two medications made a huge difference for my daughter.

          Good luck! Let me know if you have any other questions. I hope your daughter finds relief!

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