I wanted to take a few minutes to talk about one particular aspect of our frightening experience with my daughter’s recent appendicitis and surgery. I am sure that experience is frightening enough for any family who deals with it, but EDS added a layer of complexity and unease that, most likely, other folks don’t have. Beyond all of the general EDS concerns I had, one particular comment that the surgeon made stands out to me, and I think it deserves a frank discussion.
A bit of background first…
My daughter woke up that Monday not feeling well. Her stomach hurt and she was a bit nauseated. Neither of which is out of the norm at all for her. She has had daily (sometimes severe) abdominal pain and nausea for more than a year, thanks to EDS GI issues and Mast Cell disease. This pain seemed a little unusual as the day went on – she couldn’t eat, the pain increased and the nausea got worse and worse. However, it was also time for her period, which is always is accompanied by severe cramps. So, the water was doubly muddied for us in trying to decide if this was run-of-the-mill stuff or if it was serious enough to warrant medical attention.
So, through the evening she got worse and I kept asking if it was her normal period pain. She kept saying she thought so. By the next morning, I knew she had to go to the ER. She hadn’t been able to eat since Monday morning and was having trouble even drinking water. But, she was resistant and leery of ER docs – that it was a 45 minute trip to get to the ER was also something she dreaded, being in such pain. So, it was afternoon by the time I was able to get her out the door, not knowing that her life was in more danger with every passing minute. When all was said and done, at 1 am Wednesday morning she was taken into surgery to remove her appendix.
When the surgeon came to speak to us after the surgery, she told us the appendix was large and gangrenous. Then she made the comment that I think is vital to share… She told us that the inflammation and appendix pain was not new – that it had likely been developing for a while and that Em probably didn’t even notice because of her chronic pain.
That was a sobering thought, to say the least. The pain she lives with every day, even though it is being managed, masked a very serious, life-threatening condition. What do I even do with that information? It was hard enough before – making the decision whether or not to go to the doctor or the ER is always an excruciating one. EDSers typically do their best to avoid doctors, and try to manage on their own. Turns out, this time, that could have been fatal.
We moms of EDS kids have a difficult task and a huge responsibility when making these decisions – I know I often feel totally out of my league. I have no medical degree – how am I supposed to make these decisions? Especially when I have been made to feel stupid for taking her to the ER for what I thought was good reason but the doctor saw nothing of concern. We are between a rock and a hard place for certain and our lives would be so much easier if the medical community knew a little (a lot) more about EDS and didn’t leave us to make all of these tough decision on our own. To me, this is the absolute hardest part of dealing with EDS on a daily basis – to be responsible for making medical decisions that I am not remotely qualified to make is absolutely terrifying.
Another point that should be made in this conversation -I never assumed her pain was EDS related, but that would have been a pretty easy mistake to make (at least in the beginning), when EDS can (and does) cause pain and nausea. I did, however, jump to the conclusion that it could be a kidney stone, because she is on medication that can cause them. So, in a way, my thinking was following the EDS trail – if I had simply Googled her symptoms I would have seen that she was really a text book case of appendicitis. We tend to link every symptom and problem back to EDS, which, frankly, is probably true most of the time – certainly, in some situations it is even more difficult to make a distinction. But, sadly, EDS does not make one immune to all of the other normal stuff that can happen to anyone. That bears real consideration when we have these types of decisions to make. I am always accused of overreacting when my daughter is having a new set of symptoms, but this time, I underreacted and that is sobering – and a bit confusing, to be honest.
So, the moral of this story is, to be very careful making the decision to stay home when something out of the ordinary is happening – whether an adult or a child. Pain is part and parcel of EDS and being in high levels of pain is the norm for many EDS patients. But, when something is a little odd, or seems really abnormal, you need to really try to parse whether it is something that needs medical attention or can be dealt with at home. My advice is to err on the side of caution.
Looking back, I don’t know what I could have done differently with the information I had at the time – the pain and nausea were definitely out of the norm, but that she was starting her period, really obscured the true picture for me and delayed us getting medical attention for about 18 hours. Fortunately, everything worked out for us – we had great doctors and an EDS savvy surgeon, but no one can say how long it would have been until the appendix burst, making the whole situation that much more serious. That haunts me, to be honest, although I am just trying to focus on how well everything turned out.
The last point I want to make is that we need to be particularly careful of our daughters (or ourselves, for that matter). We can ascribe so many issues to the menstrual cycle and, often, rightfully so. But, if there symptoms that are unusual or seem much worse than normal, do not discount it – get it checked out. Follow your gut and don’t make assumptions.
This has been a sobering lesson for us and we are going to have to try to assimilate this experience into our decision making process. It won’t make it easier, but it very well may make it more effective in the long run. I think this was a very close call for my daughter and I think she is very fortunate to be on the mend and doing well. I always tell my daughter that she knows her body best…except when she doesn’t. There are times she assumes symptoms are normal, so she can’t always be relied on to know what is serious and I think this was one of those times. She was so accustomed to abdominal pain and nausea that serious pain didn’t signify anything to her except more pain.
Hopefully, our experience can help another family if they ever find themselves in a similar situation.