No sleep

Still no joy on the sleep front. Em has had a few nights of falling asleep ‘early’ at 2 or 3 am. But she has also had several nights of being awake until 4, 5 or 6 am. She didn’t fall asleep until 8 am this morning. Poor kid. I am at my wit’s end. How can she not be completely zonked by 10 mgs of flexeril? At 5 am she took more tramadol and tylenol but still was in such pain she couldn’t sleep.

Either the flexeril is simply not sufficient to help her sleep – she does seem to develop a tolerance to it quickly – or her pain is overcoming even a higher dose of something that should knock her out. Probably a little of both, tbh.

So, now we are back to her back. Everything always comes back to her back. It keeps her awake. It tortures her. So, is it just ‘normal’ EDS pain or is there something mechanical? Lots of things could be going on but what exactly is it and is it serious?

The million dollar question, as always, for an EDSer is ‘do we need to go to the dr?’  It is never an easy question to answer. The average person, certainly the average parent who had a child with such pain, would make an appointment asap or head to the emergency room. It just isn’t that easy for us. Pain is a constant for Em so we cannot use that as our guide. Any injury is usually invisible – no swelling or even bruising, so we can’t rely on looks alone. And any trip to the emergency room is fraught with danger – the wrong person could actually cause more damage, not to mention that it is a lot of money to be told ‘everything is normal’. Even a trip to the doctor, who knows her and her condition, can be pretty pointless.

For all of my waffling on and on for weeks, I think I have finally come to the conclusion that we need to go to the ortho and get her back checked out. I am still convinced that it is tethered cord syndrome, but we could also be dealing with scoliosis, damaged disks, stenosis, spondylosis and much more. A simple MRI could give us some much needed info – rule in or rule out. I trust (more or less) Dr. Woods because when her back was hurt in the fall, he took it very seriously. Couldn’t do anything at the time, but took it seriously. Apparently, legs going numb makes doctors pay attention. So, I am fairly sure that he would listen and order an MRI this time. Especially with the official diagnosis.

So, it will have to wait until next week now, but I will make an appointment and see if we can get some answers. In the meantime, I can call/email Dr. Tinkle if things get too bad.

Spoke too soon

I shouldn’t have been so quick to state we had the sleeping issue under control yesterday. You would think I would learn!

Last night, Em was in terrible, terrible pain – even after all of her meds – and didn’t fall asleep until 7 am. 7am! The storms didn’t help – she does tend to hurt more when the weather is bad and certainly the noise kept her awake. She was absolutely miserable and just couldn’t fall asleep.

I just don’t know what to do for the poor kid. Her neck and head were seriously hurting, and I think her autonomic dysfunction was acting up. She was overheating, nauseated and dizzy. Those symptoms do tend to correlate with the severity of her headache. She tried the cervical collar but it tends to make other things worse – her jaw, teeth, back suffer when she wears it. So it is a matter of weighing the benefits at any given moment.

If we could just get her some decent sleep… And I know it is not just poor sleep habits – she can be awake all night and still not sleep the next. Or vice versa – sleep all day and still sleep that night. It is the pain that keeps her up and that is so frustrating.

Also frustrating: the fact that we are in another holding pattern until we get to the next round of testing and ruling out/ ruling in phase.

*Sigh* I have a feeling we should expect more long nights in our future….

The *Joys* of EDS

Em is going through a spell of very poor sleep and it is getting a bit old, to be honest. Not her fault, but it is frustrating us both. She is in such pain with her headache, neck pain,  back pain and various other joints joining in the fun that she just cannot sleep – even with meds. How she can be awake after a flexeril (which used to knock her out completely) or 2 zanaflex is beyond me. Last night she took 2 zanaflex (muscle relaxants), tramadol, tylenol and an Aleve – all prescribed by the dr. All of that and no noticable pain relief and wide awake until 5 am. This is the 6th or so night in a week and a half that she hasn’t fallen asleep until the wee hours of the morning. Ugh. And there was absolutely nothing I could do to make her feel better last night. So incredibly frustrating.

The fact that her joints are quite unstable right now and she is in a lot of pain does not help her sleep at all. Saturday evening, we had our Homeschool Co-op Open House. She went but ended up dislocating her shoulder and hurting her hips. Her jaw went out and didn’t want to go back in. Her back is doing something – she has been in a lot of pain in her upper back recently but last night she said something popped and now it hurts even worse. Her vision goes blurry every time she pops her neck – which she does all too often for my taste. It is even starting to scare her, which is saying something! Her knees are bad, even with the wheelchair and her hips are just not right currently.  Oh, and last night, she had a regular headache on TOP of her cerviogenic headache. Fun, fun, fun. Those are just the highlights.

It never seems to end – and now I have to figure out if the back pain is worthy of an ortho visit or if we wait it out. I am afraid there is something really wrong with her back but so far, nothing has really showed up. Then there are the background concerns of getting so many x-rays…

Ugh. That is about all I can say this morning. Wish I could just go back to bed!

Those darn ring splints

Well, turns out I was wrong to assume that our appointment next week with Gwen was to get our shiny ring splints. It is indeed an appointment to remeasure her. Somehow – and I am not entirely clear how – we did not get all of the sizing information needed, so we have to go back and try again. Now we will be lucky to get them before our visit to Dr. Tinkle. It is frustrating but nothing to do about it.

And besides, since she is not capable of doing much at the moment due to the dizziness, nausea and fatigue, I guess the splints are not vital anyway. A week ago the ring splints seemed like the most important thing in the world. Now, for some reason, getting them promptly or not pales in comparison to the idea of Chiari/cranial instability and other related icky stuff that could require brain surgery.

Yesterday, Em couldn’t stay awake. Today she was up at 6, feeling nauseated and unable to go back to sleep. She did finally fall back asleep on the couch so we will see how she does the rest of the day. There are 6 inches of freshly fallen snow and she will only be able to enjoy it from the window. 😦

On the upside, we cancelled Co-op today because of the weather, so I didn’t have to figure out what to do if she wasn’t able to go. Hate to miss again but no one needed to be out in this weather.

(note to self: Em’s HR was 140+ last night after her shower. It was actually more than that, because it was almost to fast to count. I lost it somewhere around 130 and the 30 seconds wasn’t  nearly up)

Popping back in to add that Em has had a marginally better day. By better, I mean more awake.  Woke her up around 3, she was very grouchy with a terrible headache but she stayed awake for the rest of the day. The nausea is preventing her from eating much. Today all she has eaten was a handful of pretzels and a couple pieces of chocolate bar, a couple bites of ramen noodles, part of a can of cherry limeade, a ham & turkey sandwich from Subway, a few chips, some Coke and a small bowl of ice cream. She was hungry but couldn’t even hear me make suggestions of what she could eat without feeling like throwing up. All in all, though, a somewhat better day. She was up moving around a bit, straightened up the living room and took a shower. Still very dizzy and nauseated with a terrible headache. Her pulse seemed to be a little more stable today – still fast when upright but more manageable than yesterday.

I think I am going to keep a record of what she eats, her pulse and symptoms so I can show the dr if needed. I suspect we are going to have to push for answers and we might need all the help we can get…