The Big Appointment

I haven’t posted in regards to the important neurology appointment we had this month. Em had been referred to a neurologist at OSU at my request, so we could try to get a diagnosis – either of CRPS or small fiber neuropathy or something. Then the labs done during her LP in January showed some concerning markers for MS and sarcadosis and her local neuro wanted her to see someone more knowledgeable than him. Since we already had this appointment set up, it could serve both purposes. Then, the seizure-like episodes started and added an additional layer of wackiness.

So, basically we threw a whole lot of crazy at him. EDS, CCI,  MCAD, POTS, possible CRPS or “something”, evaluate for MS, seizures…  Did I leave anything out? Actually, I did: Post Concussion Syndrome. Sigh.

We have learned the hard way not to put too much hope or weight on any single appointment, but I would be lying if we didn’t at least sort of hope deep down that he would be able to give us a diagnosis and a quick solution on the first visit. When he didn’t, it was a little disappointing and overwhelming.

What he did was listen and order a bunch of testing:

• He ordered an inpatient stay on the Epilepsy Monitoring Unit to try and figure out what is going on with these episodes. (Side note: after a month and a half of them and a helpful hint from a reader, I think we have a direction to go in. Video EEG monitoring is definitely needed, but will only be a start. More about that soon!) He definitely agreed that we need to rule out all the medical possibilities before jumping to the conclusion they are psychogenic. Don’t have this scheduled yet, but hopefully we can get it done soon, figure out what the heck is going on and stop it.

 

• He ordered a bunch of labs, including mast cell testing. No one, including the allergists Em has seen has been interested in pushing for an actual diagnosis or any treatment other than Zyrtec and Zantac. It would be nice to have someone actually helping with this.

 

• He ordered 3 brain MRIs – one with and without contrast, a MRI Angio and MRI Venogram. I am assuming these will help rule in/ out several things, MS for one. He also was not thrilled with the fact that she has been on Diamox for several years with no evidence and is wanting to make sure there is no structural issue causing her high pressure headaches. He did say he wouldn’t mess with her Diamox but he was clearly skeptical. However, he was shocked that cervical fusions are so common for treating neuro symptoms in EDS. We definitely agreed that it was wise to avoid a fusion if possible so that was a start. Perhaps, with time, I can help him understand the rational of the Driscoll Theory and why we absolutely believe Diamox saved Em’s life. There was just too much to cover in this first visit.

 

• He ordered an nerve conduction study. This is definitely looking at CRPS but her exam also showed some very concerning numbness in her legs. I knew she had numbness but it was far worse than we knew. He pricked her all over with a pin. She mostly could not feel it in large areas on her legs. Like, at all. Her feet and hands are numb but her legs in particular have very little feeling. He seemed concerned. I know I was. So, perhaps we are looking at a neuropathy instead of CRPS? She is having increasing difficulty walking and I have to wonder if this is part of the problem. I don’t know but it is more than a little scary.

 

• He ordered more autonomic testing – another Tilt Table Test and a sweat test and 24 hour Holter Monitoring. He is concerned that much of her problem is autonomic related and seemed to get caught up in the fact that she hasn’t been diagnosed specifically with POTS by the cardiologist. I am honestly not sure what a name does in this case – the cardiologist is treating her for/ as if she has POTS but has said he didn’t want to label it POTS because it is more complicated. So we have just used the term “Autonomic Dysfunction” this whole time. I am conflicted on this – on one hand, I totally agreed with the Autonomic Dysfunction diagnosis as opposed to POTS. On the other hand, I have felt for a long time that they are not doing much for her at the Syncope Clinic. We go once a year and they say, “Increase your Midodrine; see you next year”. So, maybe this reset is what we need. But… I absolutely dread the idea of another Tilt Table Test for her. He says the one she had several years ago wasn’t good enough, that he needs more information. I am not sure I totally see the point, especially considering she will have to be off ALL her pain meds for 3 days. I can’t even say how awful that will be. We are holding off on scheduling this until we talk to him again. We will need some help, some plan to make this happen – a 2 hour car trip is bad enough on a good day, I cannot even fathom how she would manage that trip without pain meds. If it is not absolutely necessary, I can’t put her through that. Yet, I wonder if maybe, with as dire as the situation is, it is necessary to figure out what is going on.

We liked him well enough, but the whole thing was a little overwhelming – he was very clinical, very data oriented and it was both comforting and annoying. Em was frustrated – exhausted, in more pain than she was in to begin with – because while she couldn’t feel most of the pin pricks, it still caused her pain to spike terribly afterwards – and terrified of having to go off her meds. So, she was not exactly rational about the whole thing, not that I blame her.

I eventually came to the realization that he addressed every single issue we brought up with him. He ignored nothing we said and is looking at everything. He was skeptical about CRPS, because it certainly shouldn’t present quite like she does. So it might be a that she has CRPS but the full body pain might be down to Central Sensitization or neuropathy or something else entirely. He seemed to know a little bit about EDS – certainly he knew the connection between EDS and POTS – so we will have to see what level of knowledge he has as time goes by.

The thing that really got me, was that he wanted to see her back in 4 months. When we actually scheduled that appointment, I realized it will be 2 weeks shy of a year since this all started. A year of this torture and no relief in sight. I know the wheels of medicine turn slowly and that we need time to get all of this testing done before we see him again, but knowing we are at least 4 months from any help was absolutely crushing.

So, we are getting all of this testing scheduled  and completed and just hunkering down and trying to survive.

 

Rare Disease Day 2016

 

Today is Rare Disease Day, with a focus on Making the Voice of Rare Diseases Heard.

Usually, I write a post on the theme because I feel strongly about this. Ironically, I am feeling overwhelmed by actually living with our allotment of rare diseases and just don’t have the brain power to write something brilliant.

I can share some links that will help you share some awareness on social media. Use your platform to share information because giving a voice to this cause is important. Make your voice heard and support the Rare Disease Community!

 

Rare Disease Day

 

Cover Photo and profile picture

 

A Temporary Filter for your FB Profile Pic

 

Rare Disease Day Logos

 

Email Signature

 

What are you doing to promote awareness today? Leave a comment and share!

 

The Newly Revised Driscoll Theory

This post is long overdue (and I apologize for that!) but I said I would post when the updated version of the Driscoll Theory was available so, here goes! (Better late than never!)

You can go to Dr. Diana’s website and purchase the ebook. The $19.99 cost will help fund continuing research (and there is more on the horizon, trust me!)

 

From Dr. D:
This book is written by doctors and patients who live with EDS/POTS every day.
Revealing the cause of “EDS/POTS” results in a new treatment paradigm.
All proceeds from this book will be used to fund further research.
Gentle hugs to you all…

 

I was privileged to help out a bit as Diana was working on this revision, as well as to contribute a piece about our experiences with the Driscoll Theory. Our story (Emily’s Story) is in the book (in Chapter 10), as are touching stories from other patients who have been helped by Dr. Diana’s work. In addition, there are chapters from physicians who have both personal and professional knowledge to share. Of course, POTS, intracranial pressure, mast cells, vascular abnormalities and more are explained and discussed.

Pop over to prettyill.com and grab your copy of the new Driscoll Theory. (I have it on my Kindle, for late night references and doctor visits, as well as my computer, so it is always available!)

Feel free to come back here and comment, once you have read it! If you have questions, either comment here or go to the Ask a Question page and comment there. If I can answer your question, I will. If I can’t, I will pass it along to Dr. D and have her answer you.

Having the Driscoll Theory in print once again is the next step to ensuring the paradigm shift that started more than 3 years ago becomes a standard of care for EDSers. So, it is important that we share this with everyone who could benefit!

Finally, I would like to thank Dr. Diana for her work in making her theory available for all of those who desperately need a bit of hope. I think we all sometimes forget that Diana is just like all the other EDSers out there – she has her own medical challenges to face and she has a family to care for – so that makes this project, that she worked so hard on, even more special. Thank You Dr. D!

 

Now, go get your copy and enjoy it! 🙂

Need your help again…

You may remember me talking about a project Emily and I are working on – we are writing a book and hoping to get it published. I had sort of intended to have it ready and submitted a year ago but, well, that didn’t quite happen. It has been mostly written for almost a year, but I got sidetracked: the story of my life.

Anyway, we are back to seriously working on finishing… Emily is writing her portion (which may have been a large part of the delay) as I continue to remind her that this is formal writing which needs to be a notch (or two or ten) higher than her blog or other conversations. She is doing a good job, although I am slightly regretting telling her that I expected ‘real’ and ‘honest’ and not the sanitized version from her. I am thinking I should have requested sanitized and worked backwards…

On a serious note, this is a big deal and a fairly emotional undertaking for her so I am pleased that she is giving it a serious go. While she works on her part (basically, a short essay to accompany each chapter) I am working on our book proposal which will be submitted to agents in due time. The book proposal is nearly as complicated as writing the book itself, so it is no small task. I know we are not unique among authors who are convinced their book should be published, but, you and I both know that the EDS/ chronic illness community can always use another book that offers encouragement and hope. So, I am going to naively carry on believing that we will be published and hopefully my positivity will pay off. 🙂

I asked for help from my readers when I first got started writing and I am going to ask again:

First, I would love it if you would comment with the title of any books on the topic of living with chronic illness or suffering or any topic that would be helpful to living  well with chronic illness that have helped you and you can personally recommend. This can be as a parent who has an ill child, a teenager who is ill, or an adult who is ill. I have a pretty substantial list of books, either that I have read or that have been recommended to me but I don’t want to miss any! So, tell me: What books are your go-to selections for encouragement, help, guidance in your life with chronic illness? What book would you give to a friend who was starting a journey with chronic illness?

Second, I am including thoughts, comments, experiences of other teenagers who live with chronic illness. I have several people who have already contributed but have room for a few more. So, if you are, say, are a teenager up to mid-twenties and are interested in answering a few questions so I can include some of your thoughts into my book, let me know. Since the book is applicable for any chronic illness and not just EDS, I especially would like thoughts from other conditions: asthma, depression, anxiety, diabetes, Chiari – any chronic illness, really. I especially need the perspective of young men, as their experience may be a little different than girls. Comment below or contact me via the link in the sidebar.

Third, please take a moment to hop over to this post and answer a couple questions in the poll. Part of the book proposal is research on why my book will sell. So, share your thoughts via the poll so I can have a few statistics on why this book is needed and a head start on future projects. If you have a comment to share about why a book such as this would be helpful, feel free to share it below.

I appreciate your help and am looking forward to hearing from you!

 

Please Take This Poll

As I mentioned in my previous post, my daughter and I are writing a faith based book that we are hoping to have published. This book focuses on mostly the emotional aspects of living with chronic illness, although some practical advise is shared. It is aimed at chronic illness in general and not only EDS.

We are in the final stages of getting the book ready to submit and I am doing a bit of research that you can help me with. (I have a few future projects in mind as well, including a companion journal that could accompany our current project. This journal would include recommended reading (by me), inspiring/encouraging songs (recommended by Em), and activities/exercises that expand on the topics covered in the book.)

All you need to do is take a moment and answer the questions in this poll if you are affected by chronic illness. The more responses I get, the better!

Thanks in advance!

Check all that apply:

 

The Driscoll Theory Updated

Alrighty, folks…Here is a post I have been needing to get up and one that was certainly not put off for lack of interest. Suffice it to say, I am intensely interested in this development and I am sure many of you are as well.

Dr. Diana Driscoll, EDS patient, researcher, (and a very patient researcher, ha ha 🙂 ), and amazing author of the Driscoll Theory, which has been an incredible blessing for so many EDSers, will be releasing an updated and revised version of her theory soon. As usual, she is dealing with her own serious EDS health issues as she moves forward with her much needed research and her hopes to have this big project completed already were derailed by a hospital stay. But, in the midst of her recovery, she is hard at work getting the newest version of the Driscoll Theory ready for publication. The lady never stops!

Going off task for just a moment, I would like to ask for your prayers for Diana – for her health, for her family and for this much needed update of information that will make such an incredible difference for so many people. She doesn’t often say so, but the path she finds herself on is not an easy one: the path less traveled (especially in the medical world) is hard and lonely and draining, in every sense of the word – physically, emotionally, and financially. And that is on top of her own life as wife and mother and daughter and friend and seriously affected patient. Keep her in your prayers, if that is your way, and at least wish her the best, if it is not. 🙂

I know many of you share my deep gratitude for the work Dr. D is doing on behalf of the EDS community – my daughter has a real chance at life because of the Driscoll Theory and she is not the only one by far! Bless Dr. Diana and her amazing work on behalf of EDSers around the world.

Ok, back on task with a message straight from Diana herself:

 

By popular request, The Driscoll Theory (updated, with numerous experts)
coming soon! We’ll cover information about intracranial pressure, why we
need to move past mast cell activation, what’s up with our vascular
abnormalities, “Diamox Pearls”, inspiring patient stories and more.

Many of us are working hard to get this to you so we can answer
many questions at once. We’ll keep you posted! 😉

 

As you may know, initially, Dr. D generously shared her theory online, but eventually had to remove it thanks to some unsavory people misusing it for their own benefit and placing EDSers at risk. It was a sad situation that made it more difficult for affected EDSers to get their doctors to consider the theory. So, the updated version will be a welcome development!

It will be an enormous help to have additional information published about the life-altering treatments proposed in the initial version of the theory. It is incredibly frustrating to have these treatments, which could help so many, viewed with derision by the ignorant medical establishment and thus just out of reach for too many EDSers who desperately need them. The upcoming update will move the conversation along and hopefully give the naysayers something to think about.

So, hang in there until Dr. D is ready to run with this – it won’t be long. I can’t predict the timeline with much accuracy, but I think the goal is to have this ready in the next couple months. If you can, share this information so we get the word out. If you are on Facebook, here is a post from Dr. D that you can share:

Productively Unproductive

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.

 

Endoscopy

As usual, the worry in the lead up to Em’s endoscopy was greater than necessary and we had a blessedly uneventful morning. Although, there were some real concerns that have to be addressed with EDS and I am glad I spent time planning for them, I am just glad nothing came of them.

Again, the staff at Riley was excellent and, because they made good choices, the procedure went smoothly. She was delivered back to the post op room within the hour, the procedure took maybe 30 minutes. The anesthesiologist popped in to tell us how things went and then Dr. Croffie came by with pictures. Basically, everything looked normal – no smoking guns – no obvious EoE, no GERD, no ulcers, no structural issues.

So, now we wait on the biopsy results to see if anything shows up there. If so, we can address it, if not, we follow up and see what is next. Personally, I think we are getting closer to saying that it is just mast cell and gastroparesis, but what do I know?

Here are some of the things that went right yesterday and made the process smoother:

• She got to wear her hard collar through the whole procedure – both the anesthesiologist and Dr. Croffie were fine with it and I think it helped. Unfortunately, her neck is still sore but I think it could have been worse without the collar. (This feels like a huge victory because when she had her appendix out, we were told she could have it on but the anesthesiologist made her take off it once she was back in the OR. Which was not ok and has bugged us ever since.)
• They usually do the anesthesia with the patient lying on their back, then reposition the person on their left side for the scope once they are out. The anesthesiologist initially said they couldn’t let her position herself because the anesthesia had to be done while on her back and they would just have to be extra careful moving Em. She did ask about the problem joints and we felt she understood our concerns. However, Em said that they decided just to leave her on her back and not risk rolling her over. I think that was a very good choice. She is sore and spent time afterwards putting herself back together but I don’t think she had a major dislocation so that seems like a good thing. (I am suspecting that they did move her to take her to the recovery room and that may be why she is so sore.)
• She was able to hydrated up to the last minute – she drank a couple bottles of water and half a vitamin water before 6:30, so that was a beneficial thing. She was also allowed to take her morning meds, so she didn’t miss a dose.
• I got her some Sea Bands and they helped control the nausea, both motion sickness on the way there and the post op nausea. She still felt queasy but her nausea started diminishing once we put the Sea Bands on her afterwards. I used them when I had severe morning sickness when I was pregnant, the kids have used them through the years for motion sickness, but I had sort of forgotten about them for Em’s ongoing nausea. She will keep a pair with her now and use them whenever she gets nauseated.
• The doctors listened to my concerns, clearly. Because they listened, the morning went smoothly – I felt better about proceeding and they had the information that allowed them to make good decisions. Communication is important.

All in all, it went smoothly – her throat wasn’t even sore afterwards. Her chest is – she was complaining about her ribs hurting as soon as she was awake enough to complain. We are assuming it is from where they pumped air in during the scope or maybe when they moved her afterwards. She also started complaining about feeling like she had heartburn last night which is to be expected. She is very tired and the nausea is lingering, but she was nauseated pretty much constantly before the procedure, so that is no surprise. Otherwise, she feels pretty good.

So, we are glad to have this over and done with – it wasn’t horrible but we are fortunate to have avoided the worst of what could have happened.

Barbarians at the Gate

As a student of history, I tend to view everything from the lens of the past; even Ehlers Danlos Syndrome at times. EDS is a formidable enemy – a pillaging barbarian of historic proportions. Much of human history involves seeing the barbarians heading for the gate and the populace girding itself for war. Our fight with EDS is no different…

For more than 3 years, my family has been under siege by EDS and its ugly band of cohorts. Our situation is not much different from being in a walled Roman city or a medieval castle, surrounded on all sides by the enemy – the only option is to dig in, figure out who you are fighting and just try to survive.

Unbeknownst to us, the barbarians had been quietly encircling us for years, but the first alarm came in September of 2009 when Em had her first major dislocation. Confused by the sudden attack, we could not identify the well hidden enemy – who the heck was holding us hostage? By the time we identified the invaders [for our purposes we’ll call the EDS army the “Vandals“, one of the barbarian groups that attacked Rome (appropriate, don’t you think?)], they were well entrenched and we knew we were in for the long haul. The weapons of this enemy were hypermobility, dislocations, joint pain, and fatigue – and, in conjunction with its equally nasty allies, generally stealing away everything of importance. Here is what we were up against:

Not who you want to see walking up to your front door…

Then, we found the Vandals had invited their buddies the “Goths” (aka Dysautonomia) to the party, who brought their own special weapons: tachycardia, syncope, fatigue and rapid disability. It looked something like this:

The Goths in action

Following close behind the Goths were the Mongols, with their debilitating combo of neurological symptoms. These guys were bad, BAD news. I am fairly sure I saw Genghis Khan himself, leading the charge against my kiddo.

The leader of the pack, Genghis Khan

Then came the Huns – the thuggish and ill-behaved mast cells pillaging/activating all over the place for no good reason. Little did we know that these were the guys who had stirred everyone else up and would prove to be a wily and evasive foe. Attila the Hun is a total jerk, as you might be able to tell from this image:

The Latin inscription translates as ‘Attila, Scourge of God’. ‘MCAS, Scourge of God’ works too.

The last of the usual suspects were the Vikings, casting a pall across the land with gastroparesis, slow motility and early satiety – using food as a weapon is their MO.

Overwhelming force. Against a kid? Really?

Each of these evil doers brought their own special set of symptoms that interacted with and enhanced the weapons of the other attackers. They were often in cahoots, although each of them were plenty formidable enough on their own – banding together, they can feel unstoppable.

It has taken us many, many months of hard work to make progress against these foes. We were ill prepared in the beginning but had a few tricks up our sleeves – a team of good doctors who have thrown their smarts into the effort, family and friends who have stayed the course with us, our own resourcefulness in figuring out how to get through this crisis and the right medications to combat each of the weapons used against us. The siege has been long and hard and exhausting – there have been moments when we felt like giving up.

But, the thing about a siege is… It eventually ends. It may take years, but it eventually ends and, often in history, the advantage is with the home team. The invading army, if it cannot gain a victory, gives up and heads home. Usually weaker than when it arrived. And, better known to the inhabitants than when it slunk onto the scene undercover of darkness. Moreover, by the end, the townsfolk have been battle hardened and have fortified their defenses. They may be attacked again by the same enemy, but it will likely not be a surprise and they will be ready to fight.

So, if you can just hold out long enough and bear the horrible deprivations a siege brings, the enemy can be beaten back. Perhaps not defeated entirely, but once you know the ways of your enemy, you have a chance to to beat him. I know that sometimes EDS is not beatable – sadly, too many good people have been lost to it. But, every person who fights back and wins weakens the enemy so that fewer are taken. We just have to hold on.

 2 Corinthians 4: 8-9 

We are hard pressed on every side, but not crushed; perplexed, but not in despair;

 persecuted, but not abandoned;struck down, but not destroyed. 

Allergy Follow Up

We saw Dr. Abonia for a follow up yesterday and, he was just as nice as he was the first time we saw him. If he seems a little preoccupied with the possibility of EoE and seems to be not at all focused on MCAS, I am able to tolerate it and give him time to, hopefully, get on the same page I am on. After all, we are delving into the strange and rare in either case and EoE will need to ruled in or out before we can even start to address the possibility of MCAS. He seems to be not really considering it at all and I remain convinced it is the problem, so we shall wait and see. (Although, in our report, it still mentions investigating both MCAS and EoE, so maybe it is still in his mind more than I think.)

He confirmed that Em’s bone scan is normal,  by the standards Reid uses. So I interpreted that to mean he just had to accept their reading of it but could not verify the accuracy himself. He was as shocked as I was by the fact that Em’s vitamin D level has increased as much as it has (from 6.1 2 months ago to 25.9 now) but is still concerned and feels she needs a higher dose of supplementation. He said to mention both her bone scan results and vit D levels to the new GI doc we see on the 10th, but I think I will see what I can do about it before then. [Apparently, the only pediatricians on our insurance are in the office I am currently unhappy with. But, our other option is to go with a family doc and I am willing to take that step at this point. Andrew has one in mind that he trusts to manage a complicated case like Em’s, so he is going to try to talk to him. So, that issue is on hold but is being dealt with.] He also suggested that she get with a dietician, through the GI doc,  to help figure out the  vit D deficiency and other food issues.

Dr. A was pleased that the hydrocortisone cream and vaseline has improved the rash on her neck. He suggested the vaseline and I later suggested the cortisone cream because that is what we used to use on her eczema when she was young and it worked well. At some point a couple years ago, Em decided that the cortisone cream was pointless and stopped using it. At which point, the rash got worse and worse. When she grudgingly tried it again at my suggestion after Abonia made a big deal of the rash, she was horrified to see how quickly it worked. But, beyond being aggravated that she could have kept the rash in check for the last couple years, she is happy to be rid of it and to have a way to manage it. He is tentatively labeling it as eczematous – which, from what I have read, just means it is a rash related to plain old eczema. I think that is likely the rash she has had on her face, but, since it is gone for now, couldn’t get an opinion on. He wants her to keep on with the vaseline and limit the use of the cream as much as possible.

One thing I liked was that he wanted to know what we wanted out of this visit – my first thought was to say that we were just following orders to follow up. Apparently I have had too many doctors not feeling the need to make an appointment worth our while to understand the concept of ‘let me do  more for you’! He is still convinced that the flushing is likely caused by EoE and not MCAS, but he pondered out loud as to what else we could try to help address the flushing. He suggested Singulair, which I was happy about because I knew that was the next MCAS treatment. That was actually the one thing I wanted to get out of the appointment, but was tiptoeing around. He talked about the really negative side effects (ie – suicide risk) and I was not thrilled with those. But, it seems logical to give it a try and we can just keep a very close eye on her as she tries the new med.

He wants to see us back a week or two after we get an endoscopy, which hopefully the new GI doc will order. It all feels very up-in-the-air which I don’t love, but at least we have a plan going forward and he was great about suggestions and listing things we need to talk to the new doc about.

One funny thing is that he started muttering about us doing things before he could even suggest them – like the Zyrtec and Zantac and the hydrocortisone. What made it funny was that I wanted to try Singulair before he suggested it – it was on the list of questions I had written down. So, I tried to make him feel better by not mentioning I thought of it before he brought it up and let him think it was his idea.  🙂

So, it was another good visit and we have a plan going forward, and we feel good about making some progress.