Today I got an e-mail not long after I got to the classroom I work in letting me know that Bug said her wrist felt like it was out of place and hurting. The teacher had her resting and icing it, and I let her know to call me if it wasn't "fixed" in 45 minutes. I know that sounds like a long time, but back in Feb. this year something similar happened and we went to the ER. After sitting there for over an hour, they did x-rays and got her seen. By then it was feeling fine again, and we were treated like we over-reacted and sent home. I spoke with our genetics nurse the next day, and she told me that what happened at the ER wasn't unusual for EDS patients, and that next time to just ice it and rest it and typically a wrist will wiggle back into place.

Being the novice I still am (even after 3.5 years of dealing with EDS and my daughter) I did e-mail the school about what happened and what to do in the future if it happened again, but I didn't save a copy for myself, or blog about it so I'd know which wrist it was if it happened again in the future. Duh.

So, I haven't yet figured out if the wrist that was subluxed (I'm guessing that is what happened) today (THE LEFT!) was the same as before. I guess worse case scenario I will call the hospital and ask them the look in her records.

The good news is that it worked itself out during the icing, and the pain went away. Everything was fine after that. This is what Bug told me. "It looked like it popped out of place but it didn't, I put both [wrists] on my desk and they looked different. I didn't hear it pop either, but it started hurting." She said the reason she looked at the two wrists is because it hurt. As usual, it's hard to know how seriously to take this. After all, can a 3rd grader notice the difference in her wrist shape? That said, I certainly believe she knows her pain, and does it really matter if it was subluxed or not???

The one thing I am torn on is if I wish they would send her to the nurse to get stuff like this checked when it happens, or if I like her staying in class and continuing on like normal. On one hand if a nurse were able to look at it maybe I would better know if it subluxed. On the other hand, that would draw more attention to her being "different" both in her eyes and her peers. I think right now I'm going to leave things as they are, which means she stays in class and just ices there. I'm not sure that's the right thing to do, but I hope it is! :)

I just wanted to drop a quick note in here that Bug completed her second Arthritis Walk a week ago! She walked almost 3 miles, with a couple of breaks, and had a wonderful time. The great news was that this year our team was 15 members, compared to 5 last year. Considering 13 of us live 1.5 hours away or more, that was AWESOME! I was so happy to have so many people take the time out of their busy lives and come support Bug. She had one of her good friends from school come, and even though we offered to drive him his whole family came along too. And, her therapist came and joined us with one of her friends and her dog. It was absolutely wonderful.

To top it off, we brought in about $500.00 more this year than last year. Our team raised $1350 - possibly more if a couple of people's company matching programs come through for us. Next year we want to bring in $2000.00, and hopefully have at least 10 more people join us.

If you're wondering why we do the arthritis walk, it's because Ehlers-Danlos Syndrome falls in the arthritis family. :) The walk allows Bug to feel like she is actively doing something about her condition, and to top it off the walk falls in May, which is National Ehlers-Danlos Awareness Month. So we're kind of killing two birds with one stone.

So - if you don't know what you can do to raise awareness for EDS, try participating in your local arthritis walk. Wear a shirt that has an EDS message, or form a team supporting EDS. It's a great way to empower yourself and raise awareness at the same time.

http://lmt.arthritis.org/

So - after my rant I went to work to get things fixed for my darling daughter. I called my contact at Blue Cross, Blue Shield first thing the next morning and told her what had happened. She was appalled. She hardly let me finish the story before she was telling me she was calling the president of the prosthetics company to tell him what had happened. Sure enough, ten minutes later she called me back to say she had everything being worked out, they were sorry, and someone who was competent was going to be calling to take care of Bug. Five minutes later, my phone rang again and it was the head of a different branch of that company. He apologized, and I told him that it was Bug that dissevered the apology. She was the one who was treated like a spoiled kid, she was the one who has been in therapy for 2 years for medical anxiety, and she was the one who knew darn well if a brace fit correctly or not. He apologized some more, and then got some additional information from me so he could search for some lace-up ankle brace options for Bug. He promised to order multiple styles so that she could come and try them on and see what was comfortable - which is what would happen for an adult. He also promised to open the store up after hours if that was what it took for us to be able to make it there without missing more school. I felt good about the conversation, and am waiting for my follow-up phone call that was supposed to be here no later than today. If I don't hear anything tomorrow morning I'll give him a call and check-in (nicely), and go from there. I know my insurance contact will help me out if I need it, but I am hoping we're good from here. I felt like this new person was much more sincere.

So - in anticipation of the new brace, Bug and I went shopping for decorations. I knew she wasn't very happy about the idea of the lace-up, thanks to Mr. Crabby employee. She now thinks they all hurt, which they shouldn't, and so I'm doing my best to convince her that it will be fine. Part of that was going shopping at Hobby Lobby and getting decorations for the new brace. We got an assortment of things, the ones I'm most excited about are the charms. She picked out 12 charms to hang from the lace holes. I am not sure yet how I will attach them, since I don't know what her brace will look like. But I'm sure I can make it work. ;) We also got several iron-on patches to apply, and she surprised me by bypassing the sparkly, girly stuff and going for a patriotic theme! I guess I shouldn't be surprised, since she seems to be emotionally mature beyond her years. Many of the charms she selected were religious, the rest animals. It should be mentioned that she wants to be an animal rescuer when she grows up. So I guess every aspect of her new brace is symbolic, which is pretty darn cool and way "deeper" than the generic girlie stuff I initially thought of. :)

Also, when I spoke with my insurance contact she understood right off the bat that this brace was long-term and we will be needing more of them. She offered to order more than one immediately, but I suggested waiting to see how it holds up and fits, because she is still growing a lot. So, we should have no problems ordering a second of the same, or a new one when she grows. Yippee! She also gave me a direct number to the person in charge of complicated cases or something, so that Bugs PT can call and get straightened out our ongoing PT services. This way we don't have to continue to worry about them running out. Another huge bonus! I tell you, it is all who you talk to, not the insurance company itself. If you have a good contact, ask for their name and extension, it can save you so much time and energy! It took me so long to get ours, but the time, stress, and time has been worth it thousands of times over already. (yes, I meant to say time twice. LOL)

I'll update when Bug gets the call to try on braces, all are supposed to be pediatric size, so it should be interesting to see how they feel!

First of all, I just wanted to say THANK YOU to all of those who have left comments on my last post, and posts prior to this. I rarely respond, but I always read them. I often feel like this blog is every bit as much therapy for me as it is medical notes, or sharing to let others know they are not alone. While I would never wish Ehlers-Danlos on anyone, or on any one's child, there is so much comfort in knowing there are others out there, reading along, living this journey with Bug and I. I apologize for not responding when I probably should, but so often if I have the time and energy to write I try to do an entire post. However, it means so much to me to know you are all there cheering us on!

Now - on to the good part of our appointment last week!

Our new Orthopedist was AWESOME! He was everything I was hoping for and more. He spoke directly to Bug, got most of his information from her, used me to fill in the blanks or to verify. He is very familiar with EDS, and spoke highly of Bugs geneticist. He said the same thing that she had, that they have mutual respect for each other and often refer patients back and forth. He explained that he is the "go to" for pain that is sharp, or that continues on a regular basis. He also is the person to call if we think we need a brace or splint. Should we ever get to the point of surgery, he's also our guy.

Dr. George Phillips is his name, and he can be seen in the Sports Medicine Clinic (where we saw him) or in the pedi clinic. We are going to use him as a pediatrician to kind of "be the head of our team" and have our new patient appointment with him in June. I am SO excited to find someone who knows about EDS to be Bug's primary doctor. It's just a huge bonus that he will also be her ortho. :) Finally, we will be able to use our local doctor just for flu and colds, and have a pedi for her check-ups and other issues that in the past I have had a hard time deciding on who to call or how concerned to be. I am hoping and praying that this will lift a huge burden from me and help Bug get the care that she really needs, even if it's just because he knows who to send us to and when.

The other stuff I learned was that our PT looks to be long-term. He said that it's great we are going down to weekly visits, but to plan on that for awhile. Then we'll drop to every other week, then once a month, then every other month. He said right off the bat "let me guess, she's made progress but very slowly". Exactly! It was great not having to explain that! He said that is normal for EDS, and it doesn't surprise him at all the kinds of problems that Bug is having. He also wasn't surprised that it was hips last year, then ankles and knees now. He expects that as she grows she will have more problems. He didn't make a big deal about it, but he was matter-of-fact. Again, it was such a relief to hear someone talk so openly and honestly without trying to shield us from "bad news". I can handle knowing what to expect, I cannot handle the unknown. I can always hope for better, and work to keep things from going wrong. How can you do that if you don't have any idea what is likely to happen? So - he pretty much said keep up the PT, don't expect to be done with it soon, and keep a long-term PT plan going to help catch future problems.

In addition to that, Bug will be getting a new lace-up brace for her right ankle. This will be a long-term thing, although I don't know how long-term. Somehow we didn't talk about that, so I need to ask when I see him as her pedi. He did say that he was able to feel the problems in both ankles with his fingers. Weird - I didn't know you could do that. So, Bug will be getting a new brace sometime soon and she is aware it will be long-term. (I have another post on the brace too)

So - I cannot say enough good things about our new Doctor. He had a great bedside manner, knew a lot about Ehlers-Danlos Syndrome, was thoughtful and honest. Bug adored him, so what more can I ask?

Warning - this post is only complaining, ranting, and worse. If you don't want to hear it, wait for my follow-up with the good parts of the day.....

You know what I hate? I hate people who talk to my daughter like she is stupid. My daughter is smart, funny, and very good about trying to explain what is going on with her body. Any person or Dr. who takes a few minutes and speaks directly to her (instead of me) realizes it, but unfortunately there are still some !#@!%$ out there who treat her like she's a spoiled brat.

Today, it happened again. And I'm freakin' livid.

After Bugs orthopedist appointment they sent in an employee who works for a medical supply company I will not name right now to help get her a lace-up ankle brace. Until this point Bug has been fine with that idea. Enter employee X, who starts off by saying, "I hear you need a lace-up brace" (looking at me the whole time, but talking to my daughter). "We don't have anything smaller than a women's 5-6, but I think we can make it work." "Otherwise, we'll have to see about ordering something". Bug and I are still ok at this point, although I'm a bit concerned about the size of the brace since she is just hitting a children's 4. But whatever, trying it on can't hurt anyone. So, he puts it on, and as he is getting near the top of the brace Bug starts complaining that it hurts, it doesn't feel good, etc. He jumps up and says "I'll go get the papers" and leaves. I go over and loosen the laces, adjust the Velcro some, and ask Bug if it's any better. She still says no. Now she's starting to get upset because it doesn't feel right and it's still on. I asked her to walk around, just to be sure, promising we'd take it off afterward if it still wasn't right. She walks some, complains more, and we take it off. She insists it doesn't fit correctly, and that we need something else.

Enter employee X again, this time with a ton of papers he's expecting me to sign. "It doesn't feel good, she wants to try something else" I told him. He looked at me in a not so nice way and said "This is all we have". Before I could say anything else Bug chimes in "I don't like the laces" and he says to her "well, that's what you have to have, that's what the Dr. ordered." I am really getting PO'd now, not only because of what he's saying, or the looks he's giving, but his tone. His tone was a "I don't care what you think, you don't know anything, you're a spoiled kid" tone.

I told him a lace-up brace was fine, but THIS lace-up brace wasn't going to work, my daughter said didn't fit comfortably. He said "Well then, you're going to have to find something else, because this is all we have"! Then he turned around and marched out of our room. I was really really mad now. Seconds later employee X returned and tossed Bugs prescription for the brace on the table with a "You're going to need this" and rushed out again. (What, no mail order like he mentioned before? Darn, how sad for us)

GRRRRRRRRRRRRRRRRRRR

My daughter deserves to be treated like she knows what she is talking about until she proves otherwise, or, I say otherwise! I don't care that she is 8 - she knows her body better than anyone! I bet that guy had never even tried on the brace he was trying to make her wear. I can almost guarantee he has not been forced by someone who doesn't know him to wear an improper-fitting brace. How dare he treat my daughter like that, who has been through plenty in her life already.... She's been happily wearing those ring splints for 3 1/2 years now, no complaints. She's worn her current Air Cast ankle brace for three months straight with not a peep. She knows if something fits correctly or not. Shame on him for assuming she was being a brat and I was letting her be one.

So - after Bug and I left I asked her how she liked her new Dr. She liked him. I asked how she liked the nurse. She liked her. I asked her how she liked the brace guy, and she just looked at me with "the look". The look was the one that said "I have nothing nice to say so I'm not saying anything". LOL So I said, "I didn't think he was very nice." She emphatically agreed. So I promised her that we would never see him again. She smiled. Hopefully that helped smooth over what had happened. I just hope now that I can still get her to try the other lace braces on, and that I can get my hands on several for her to even try! No one in the area carries sizes small enough, they are all special order. So, I'm calling our insurance contact tomorrow to see what our options are. I'm hoping she can help us out so we can move on and not have to worry about the brace anymore.

I'm taking a deep breath now, thinking about Karma, trying to let it all go and relax a bit. But boy do I wish that people could walk a mile in my daughters shoes sometimes! Not to punish them, but to give them a small bit of understanding and insight into her world.