"Suffering the Slings and Arrows of Outrageous Fortune"

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!)



Comments on: "Visit # 1" (4)

  1. Hi!

    Is this the ointment compound? If it is fight for it – it is wonderful. Alex uses it and says it works better than the Lidoderm patches. Nick’s prescription should be arriving – his skin doesn’t do well with the patches. He also has sensory issues that make the patches problematic. I used the compound when I messed up my knee getting ready for a 5K – I couldn’t have made it to work without the compound. So, I agree fighting for it is definitely worth it. It keeps the kids off the oral meds with all of those side effects and gives them the freedom to be as much kid as they can be with EDS.


    • It is the compounded ointment – I assume it is similar to what Dr. Francomano prescribes. I was so mad when Dr. V told me our insurance won’t cover it – apparently our insurance does not allow our hospital pharmacy to contract with any compounding pharmacy, which is just ludicrous. I just know it would help her and have a bonus effect of reducing the amount of oral meds she would have to take. So, it is on the list of things to deal with. In the meantime, we will try the tramadol – and maybe, just maybe, treating the vitamin D deficiency will allow us to reduce her meds too.

      Thanks for sharing about the compounded ointment – I really appreciate your feedback on it. It is great to hear that it is working so well for your kids (and yourself)! I think it is an awesome option for pain relief.

  2. Stephanie said:

    I think it is ridiculous that the insurance companies would rather have children on the oral version of the meds with all of those side effects. I was thrilled to have an alternative to the oral medications. I wish you luck with the insurance company.

    Thank you for the vitamin d post. I have been poo-pooed by all of the kids doctors on that issue. We have yearly visits with the pediatrician coming up and we will revisit that issue again. Especially for Nick and Victoria who aren’t fans of vegetables or fruits. At 7 Victoria has announced that she is a vegetarian. Only one problem she doesn’t like vegetables. I hope the vitamin D treatment goes smoothly for Em.

    Your family is always in our prayers.


    • Well, I have a feeling that, when we get to the GI motility clinic, we will have a claim that it is medically necessary for our insurance to pay for the compounded ointment. Half of the meds Em is on will contribute to poor motility/gastroparesis so they will not like her med list. Sigh, nothing can be easy, can it?

      Regarding vitamin D: I am finding the whole thing REALLY ridiculous. First of all, no doctor has ever checked Em’s levels. Ever. I had to push it, if I hadn’t, we would be none the wiser. A 6.1 vitamin D level is serious. Second, both doctors I have talked to about it have trivialized my concerns. The pain doc, well, he seemed to come around when he saw her actual levels and knew she needs more help than he can give her. The geneticist, well, I think he is not taking this as seriously as I am and I am not happy about that. The response from him this morning is that she doesn’t need to see an endocrinologist. Just supplement and retest. I don’t know if I am not communicating clearly enough with him or if he is just clueless about the situation. (My bets are on him being clueless!)

      So far, what I am seeing is that doctors ‘know’ about the role of Vitamin D, but, when it comes right down to it they just don’t really get it. I am sorry, but when I find out that my kid is severely deficient (she should be 10 times higher than she is!), I am not taking ‘no’ for an answer. Her bone health is seriously at risk and we need to be aggressive about this – I am flummoxed that the geneticist doesn’t seem to grasp this. We have an appointment with the peditrician next week, I am pretty sure he will say she is beyond his ability and he will want to refer her to a specialist. Then Neilson and the ped can figure it out together. I am not real happy with doctors right now – trying not to be bitter about it!

      BTW, I had to laugh when you mentioned Victoria being a vegetarian – we have always joked that Emily is a vegetarian who happens to love steak! She hates that animals die for her to eat, but she loves her steak and bacon! Or, used to, now she can’t really eat it but that is another story.

      Anyway, definitely push to get your kids checked. If they are really low, they must be treated. If they are just a bit low, supplementing won’t hurt. It might not help a lot in that case, but it certainly won’t hurt and, with EDS, our kids need every possible chance to be at optimal health. Just don’t be surprised if the pediatrician is clueless.

      Thanks for the prayers – you and your family are in mine as well!

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