"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘fatigue’

The Big Piece of the Puzzle?

Jigsaw puzzle pieces

Vitamin D: One [BIG] piece of a complicated puzzle (Photo credit: Wikipedia)

I promised that I would post about Em’s Vitamin D test results – since, I just got the results from the doctor, I can now share what I think is a huge, gigantic, crucial piece of the puzzle for her health.

You are probably aware that Vitamin D is vital, being deficient is bad. Severe deficiency causes rickets in children, osteomalacia in adults. The long list of symptoms include bone pain and fatigue, muscle weakness, numbness and so on. The optimal range is 50 to 100.

Em’s Vitamin D level is 6.1. Not 61 –  six point one. That is not low, not even simply deficient. That is severely deficient and, because she is having bone pain, her pectus carinatum is worsening, her ribs are wonky and she possibly is developing scoliosis, I think we may be looking at a diagnosis of osteomalacia or maybe rickets. I know the cut off is the closing of the growth plates so Em is probably beyond that but I just don’t know for sure.

The really great news is this is reversible with large doses of vitamin D to fill up her tank and maintenance doses to keep the tank topped off. The pain, fatigue and bone changes are reversible. I don’t love that she is dealing with this, but at least this one is treatable!

She was probably low for some time, but I think most likely this has become severe in the last six months – probably since her surgery in April and the resultant GI issues. Her absorption is almost certainly very poor and definitely got worse after surgery. Her diet has definitely suffered – between the food sensitivities from MCAS and the poor appetite from gastroparesis, she eats poorly. Although she does work to eat as well as she can with the limitations she has, it is just not enough to supply her body what it needs. Add to those difficulties the fact that she is on meds that restrict her from sun exposure and that she has autonomic dysfunction and cannot stand the heat and you get a bad situation.

So, the doctor who basically poo-pooed my concern about vitamin D deficiency causing fatigue on Thursday, today is very concerned. He wants to toss her back to her pediatrician to really address the issue properly, as it is out of his area of expertise – and she is a child with a complicated medical condition. I am strongly leaning towards giving the geneticist a call and seeing what they suggest. (Bless his heart, Dr. Neilson also poo-pooed me about vitamin D causing her problems, but I think he will be able to steer us where we need to go.)

I think we need an endocrinologist who specializes in bone metabolism. And, we need to rule out thyroid issues and check up on the issues the allergist saw in the blood work this past spring. So, I am going to push for a specialist. We are going to end up at Children’s – either Riley or Cincinnati. I would prefer Cincinnati and I think we can now make a strong case that this is related to the EDS, so maybe we can convince insurance that it is necessary to go to Cincy. And there is BCMH that will help as well.

So, we will see what happens but I just feel like this is a huge piece of the puzzle. If we can address this, she could actually start feeling good again. How great would that be? So, while I enjoy being right and being able to tell a doctor ‘I  told you so’ ,  I am absolutely thrilled that we are on to something that could make a huge difference in Em’s quality of life.

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Visit # 1

We had two doctor visits last week – and both were fine, good even. I am very thankful for that because life is still a bit crazy here and a bit of ‘nice’ was much needed:  my grandfather was taken off of life support earlier in the week and is slowly passing, lingering longer than anyone thought possible. We know we are facing a funeral in the near future but just don’t know when it will be. This after we buried my grandmother (his wife) on the 5th. It has been a very long couple of weeks.

The first visit of the week was on Thursday, with the pain doc. I won’t bother to talk about how it had to be rescheduled twice and how Em had to get up early, then he was running late and we waited for over an hour to see him. It happens and was a pain (no pun intended) but not the end of the world. Just more to deal with in a very long week.

Anyway, we talked about trying to replace the Norco with Tramadol and saving the Norco for true emergencies. Not sure how that will go, but it is worth a try. The pharmacist pointed out the drug interaction between Tramadol and Flexeril – which I already knew about. I am nervous and concerned, but I have also read that a lot of people take both and are fine. Of course, I am also nervous and concerned about her taking Norco round the clock so we have to find what works best and weigh the side effects vs the benefits of both.

For the moment, with things so crazy around here, we are just going to leave her med routine as is and just use the Tramadol for breakthrough pain for now. Don’t know how well it will work – but she needs something and we have to try. There are too many times when she dislocates badly and or injures herself,  is pale, sweating and nearly vomiting from pain and I have nothing more to give her to relieve her pain. It has been incredibly frustrating and I pray this switch is a real solution. If the tramadol seems to help breakthrough pain, we can work at switching the two meds and see how it goes. [Em got hurt last night and ended up trying the Tramadol. She said she thought it helped with the pain but made her very sleepy. I hope that it will be like all the other meds she has tried and she gets used to the side effects quickly so they aren’t an issue. But, I was pretty encouraged in that she thought it helped with the pain a bit, so we will see.] I have heard that the extended release form of Tramadol is more effective as a long acting med, but the doc said insurance may not like that so, we will try the short acting form for now.

During this appointment, I also discovered that our insurance will not pay for the compounded ointment that EDSers are finding so helpful. I am not a bit happy about that, because I know it could help reduce the amount of meds Em has to take. She could have more relief with fewer side effects. So, we may have to fight and try to get it approved. However, that battle will have to be postponed for another day – too much on the agenda right now!

The doctor ordered blood work to test her Vitamin D level, at my request/demand. I am quite sure she is deficient – probably severely – and that that deficiency is an important source of her pain and fatigue. We should get those results soon and I will post more about that then because I suspect it is going to be a big piece of the puzzle.

Bottom line, her pain is being managed pretty well – in fact, these days, if you ask her how she feels, she is more likely to say she is tired than to say she is in pain. Fatigue sucks about as much as pain, but we have options to deal with it, so we are definitely moving forward. He listened to our concerns and clearly is willing to work with us to make it better. We see him again in 3 months. We will spend that time ‘playing’ with some of her meds and trying to find the best routine we can. I wish there was a clear and easy formula for EDS pain, but it is all trial and error – that we have a doc who is willing to work with us is beyond wonderful! (So, if he is running late once in a while, we will happily deal with it!)

 

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