"Suffering the Slings and Arrows of Outrageous Fortune"

So annoyed

I am so terribly annoyed.

Generally that type of statement is preceded by a doctor’s appointment and this time is no different. I have had it up to HERE with doctors this week. I am sick of them and wish desperately that my daughter’s well being didn’t depend on them.

We saw the pain doc yesterday. I knew he was going to be difficult – our attempt to schedule the oh-so-important psych appointment failed when we were finally informed about the status of insurance regarding the behavioral training appointments (which will include biofeedback, relaxation techniques, etc.) The psych department was not exactly easy to get a hold of or diligent about getting back to me, but that is all my fault and I am clearly just putting off this vital part of my child’s treatment. Anyway, after waiting a month or so to hear back, we were told – almost as an after thought -that the dept does not accept BCMH, meaning our insurance would pay 60% of the cost, since it is out of network. Our 40% would be due basically immediately and would run somewhere around $2,000. Sorry, but we are in debt enough with medical bills and won’t go further into debt for something that may or may not be helpful. I went to this appointment yesterday wanting options – if we can’t do this at Cincy, where can we do it? We got scolded and lectured about how we have put this vital piece of treatment off for long enough. One option we have is a psychologist at Dayton Children’s. Mind you, I was told by the nurse that BCMH doesn’t cover pysch care, period – even though we are being forced to do this for Em’s pain management. However, I still have to call them at Dayton Children’s to make sure they don’t take BCMH and call back to the pain clinic to tell them. Needless to say, I am a little bitter about being sent on a wild goose chase as if I have nothing better to do with my time.

Then he started in on Em about needing to exercise and do her therapy – it doesn’t matter that she is dizzy and her headache is bad again or that we are working to juggle several medical issues and get the answers. He came real close to saying in so many words that she is causing her pain and, if she is ‘good’ enough, it will go away. The simple truth is that EDS, particularly the hypermobility type, comes along with chronic pain and often chronic fatigue. So, to imply/tell a 13 yo with EDS that she is causing her own pain, is just another verse of the same song EDSers are subjected to on a regular basis – you are lazy, crazy, unmotivated, fat, attention seeking. It is not ok, by any stretch of the imagination.

He then lectured her about being on flexeril – even though Dr. T prescribed it and, that would seem to logically indicate, is comfortable with her taking it. That segued into a lecture about medication and how the goal is to get off all of it. I understood what he was saying, but all she heard was him saying he wanted to take away the meds that make her functional. I hate that my kid is on so much medication, but if that is what it takes for her to be functional, then I will fight tooth and nail for her to have them.

He didn’t vigorously manipulate her joints, like he has in the past. But he did examine her, and in doing so, hurt her shoulder – it is out of wack (for lack of a better term) and we will just have to see what needs to be done with that. Like her shoulder needed any help being screwed up! Sigh… the ‘first, do no harm’ thing doesn’t apply here, I guess. I know he didn’t do it on purpose but it happened nonetheless. Hopefully, she wakes up today and it is fine. This type of incidental injury can end up staying with an EDSer for life and is exactly what I dread – that her ability to function for the rest of her life is seriously impacted by one careless action.

I was so proud of Em, though. The doc made a few statements that were a bit out there, in terms of treatment for EDS is, and she went toe-to-toe with him. She argued for the flexeril being necessary and, while he talked until he was practically blue in the face, she made it clear – in her typical 13 yo fashion – that she didn’t buy what he said. Her reasoning was a bit off, but she has a right to her opinion. Where she really stepped up, is when he told her that she needed to stretch her back. She told him that she had been told stretching is bad for EDSers. He agreed but said she still needed to do the careful stretches she had been given to do. (She has never, ever been given stretching exercises by PT. She has core strengthening exercises but no stretches. So we honestly don’t know what he was talking about.) Bottom line, she voiced her opinions and did so in a mature, calm way. And she put me to shame because I just wanted to escape and was reduced to smiling and nodding so I could do so. She said her piece, even though it meant listening to him for longer.

Anyway, we are back to questioning whether he is the doc for us. This visit brought more statements/actions that make me wonder exactly how much he knows about EDS – I am quite sure he thinks he knows more than he does.

  • Implying that if she exercises and gets active, her pain will go away is just not very realistic. Obviously, we are hopeful that her pain isn’t at her current levels forever, but pain is part of EDS and to tell her that she can be pain free is irresponsible, in my opinion.
  • Being active will cure the oppressive fatigue she experiences. I get his point here, but, again, fatigue is part and parcel of this condition. Just push through is probably not the answer. And, he makes it sound like she does nothing but lay around all day. That is not the truth. (Of course, if she had actually told him that she does her core strengthening daily, instead of saying she is doing no PT, it might have helped. Probably not though, he tends to hear what he wants to hear.)
  • ‘Do your back stretches’. Again, I get the two sides of the coin aspect of EDS – extreme looseness is often accompanied by tightness/spasms. Em definitely has this and it is not news to us – we have been dealing with that for years. So, while, I get what he was trying to say, I am a bit concerned that he doesn’t fully understand what he is saying. Certainly that statement could be dangerous to folks who are less informed than we are. Although, we had no clue what he was referring to when he said ‘the stretches you have been given’ so maybe we aren’t as informed as I would like to think!
  • He hurt her during a physical exam. Again.  And, he told her that she didn’t dislocate her knee when he was examining her legs. If she had a quarter for every time she has been told that, she would be a rich young lady.
  • He rolled his eyes when I mentioned the Driscoll Theory and mast cell disease. I have been talking about it for months and he has never once asked for more information. I have a plethora of articles that support our thinking on this matter and have offered to share them, but he is content to just roll his eyes instead of educating himself. (Ok, this one doesn’t count against him in the’ lack of EDS knowledge’ category, but gets him poor marks in the ‘decent doctor’  category.)

Just more in a long line of disturbing actions and comments, that make me seriously question whether we need to move on. I was slightly considering this option yesterday morning – probably 25% go, 75% stay. By 3 o’clock yesterday, that number flipped – 75% go, 25% stay. We need to discuss it as a family and really weigh our options as it is a serious decision, but it is cruel to make a child see a doctor she cannot trust. More on that topic later.

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Comments on: "So annoyed" (3)

  1. mollie said:

    my child is just turned 13 and i can relate to all you have said. she tried biofeedback at the mayo pain clinic and i think that it is more suited to more mature patients. when a child is young and the pain is unrelenting biofeedback is maybe not the cure one would hope. it takes a certain amount of ownership and control that young kids like mine seem to struggle with. we have had no respite from the pain and it has been two years since episodes of anaphalxis stopped her in her tracks. from track star, paton twirler, tennis player, contant motion and overchievement to struggling with constant pain, understanding and very little help. our situation is unfortunate in that we live in fl and not near any teaching hospitals and the need for specialists who see peds and have a desire to educate themselves on eds 3, hyper pots and chem sensitivity is a challenge. it is further complicated by a court system who puts the power and money over a child’s need for care. single parenthood as a teacher doesn’t allow for much court access and as a victim of battery by my ex the court also is not doing what they can to protect us. that said, if your doctor is lessoning your child’s pain, don’t jump ship, is my thought. take what is successful, his lack of knowledge and desire to grow professionally is a shame. we were at two major med institutions and despite the blood tests they ordered to idenitfy excessive NE levels and that showed that to be a huge issue they did not help us understand that but that info allowed us to identiy hyper pots and to understand it better, now we don’t have help yet but the more info you can get the better for when the right situation presents itself. it is my understanding that these few years of 13, 14, 15, 16 are very hard, dr. abdallah told us this and i trust him very much. he is not near us though and we are still struggling to get help for hyper pots, tachy, dizzy, headaches, nausea, …….i sit in the chair of a hospital room because my child is suffering so much with saddness that she can’t deal with it. stay strong in your desire to lesson your child’s pain. be her advocate and learn from her grace as this illness requires that of the victim. i have tried to show the link on youtube of lara bloom eds trailer to anyone who deals with my child. she is a woman in the uk who to raise awaresness walked a marathon and is doing a documentary about it….the trailer is only 2.36 minutes and i play if for them and watch it with them so we can connect with how elequent she speaks of the relentless nature of eds….keep fighting for your child and thank you for sharing with others who share your journey…not the journey that we expected but our journey non the less and one that requires more strenght than i ever though possible of mothers….wishing you well. mollie

    • Hi Mollie,
      I hate to hear your daughter is doing so poorly right now. By any chance did you recently post about your daughter on EDNF FB page? I may be making an incorrect assumption but I had a feeling that might be you and responded briefly there. If so, I hope things are getting better for you and your daughter. If I am thinking of the wrong person, sorry. Either way, I am praying for you! You have been on my mind. Let me know how things are going when you get a chance.

      Beth

  2. […] So annoyed « Our Life with Ehlers Danlos Syndrome. […]

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