"Suffering the Slings and Arrows of Outrageous Fortune"

We still don’t have any answers about the episodes Em has been having and they continue daily. The EEG showed no signs of epileptic activity (although, I have not actually seen the report – only been told what it said – so I am not sure exactly what was found or how it was worded) even though she had an episode during the test.

Initially, I was told because the EEG was normal, they were assuming the episodes are psychological and wanted to refer Em to psychiatry. I threw a bit of a fit and they have referred her instead to the seizure experts at Children’s. These episodes could be psychogenic in origin, but I think it profoundly, appallingly lazy to assume so without first ruling out actual medical causes. And there are plenty of medical causes that need to be looked at. If we find a psychological cause – and chronic pain and the emotional trauma of living with a few rare sucky conditions which are routinely trivialized by doctors who are supposed to help theoretically could be enough to cause it – then we will do whatever needs to be done.

But, I am just not really buying it yet and they will have to go a long way to convince me. And I won’t rest until we have fully examined all the possibilities because I believe it would be far more dangerous to ignore medical issues in favor of a psych label than to put off a psych label while exploring medical explanations. It seems to me that the fact that she had  a concussion, which can cause seizures, should be considered. The fact that she has autonomic dysfunction, should be considered. The fact that cervical instability could be the culprit, should be considered. The fact that she clearly has all kinds of central nervous system inflammation going on, should be considered. The fact that some types of seizures are not easily caught on EEG (in particular, the type I initially suspected she might be having), should be explored. So, hopefully we end up with some really smart, really useful docs who can help us figure this out and don’t rush to a psych diagnosis.

Needless to say, the suggestion that these episodes are psychological has not been a happy one and we are working through that – it felt like a huge slap in the face to Em. Ironically, if we are going on the theory that the emotional trauma inflicted by living with EDS and by being marginalized by doctors are at the root of this, the suggestion that the seizures are psychogenic simply add to the emotional trauma. That irony will likely be lost on the doctors.

I do need to say though, that IF her episodes end up being pyschogenic, they are very real seizures. Real seizures; not faked, not put on, not under her control at all. They would be handled the same way any other seizure is handled, safety being the primary concern. It is the treatment that would be different – instead of seizure meds, it would be a matter of any number of psych based therapies.

We want answers and treatment – whatever those are – but the answers must be genuine and not merely convenient.

So, at the moment, we are waiting to schedule an appointment with docs who hopefully know how to help. Waiting, waiting, waiting…







Comments on: "No answers yet…" (4)

  1. afellowzebra said:

    Hey there-

    I don’t know if this will be helpful, but has her B12 levels been checked? I ask because I also have EDS and had a seizure like episode, and was admitted into the hospital for severe B12 deficiency. Supposedly that was the cause of the seizure like episode, although my brain never turned off, so it was more so like extreme body muscle spasms that I could not control. It looked exactly as if I were having a seizure and happened 3 times until my B12 level went up.

    I’m sorry it is proving to be so difficult to figure out it what is going on. I’ll be saying a prayer for y’all.


    • That is helpful – thank you! We actually have an order for a bunch of bloodwork to be done and B12 is on the list. Honestly, I am considering EVERYTHING right now, so I really appreciate you mentioning this!

  2. PersonA said:

    Have they done a standing MRI to check for cranial instability? If it’s not origininating in the brain it seems pluasable that it could be caused by a whole bunch of nerves being compressed in her neck area. Does she wear a neck brace? It could be worth trying and seeing if it makes the episodes less frequent? Good luck 🙂

    • They have not done an upright MRI. I suppose that will be on the list, depending on what we find out. She does wear a hard collar when she feels particularly unstable. Weirdly, the first episode she had was while she was wearing the collar. She has so much going on it is going to be a real challenge to figure it all out. Hopefully, the new doctor we are seeing will be able to do so!

      Thanks so much for reading and commenting!

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