This is just more of a note for me so I can remember the next time we see our Dr. Bug had something hurting in her right wrist again. She said it wasn't feeling like it did the last two times (horrible pain, like something was out of place) but it hurt and she didn't want to use it. This occurred during art class while using chalks. She went and told the art teacher, who asked Bug to describe what she wanted her to do and then she colored it for her. This was acceptable to Bug. ;)

Anyway, she says it all of a sudden stopped hurting.

I suppose it's good we're almost done with school so we can work hard on Dragon Naturally Speaking this summer!

She doesn't know! :) Actually, what she said was she believes that it was a small bone in her foot that must have moved out of place, and slid back in. She said that anything muscular shouldn't have suddenly felt right again, or never come back. It's now been 6 days since it all happened and not once has Bug had any pain or limited motion since her foot/ankle "suddenly felt right again". I am thankful for that, but am left scratching my head.

The PT and I had a funny talk about it all. She was talking about how she's read so many times about random subluxing and dislocations, but how it's so hard to understand as a person who doesn't have it happen. I told her I knew where she was coming from, because even when I suspect that is what happens to Bug I still often find myself looking for that other more logical reason for her pain/issues. I wonder if I'll reach a point one day where I just don't worry as much and accept it for what it is, instead of trying to complicate things by looking for other possibilities?

Anyway, we've had a great week since and are enjoying the holiday weekend. Only 8 days of school left, WOO-HOO!!!!!!!!!!!!

Well, Bug fell asleep last night still icing her ankle. That was 2.5 hours after I first learned of the pain. My husband ended up carrying her up to bed as she still couldn't/wouldn't put any weight on it.

When she got up this morning she was still in pain, but not as much. We had her put her old ankle brace on (because of your feedback), and sent her to school limping while crossing our fingers she would be okay. She iced it a couple of times at school, skipped PE, and she said "all of a sudden it felt better" sometime in the afternoon. I pressed her on if it was that she noticed it felt better, or if it suddenly felt better. She insisted that it suddenly felt better and got mad at me for asking. (you know, the "leave me alone I've already told you Mom" kind of mad)

Since then she hasn't complained once, and is happy as a clam. I'm still waiting to hear back from the PT, but I'm SO happy she's better!!!

Tonight has brought more ankle problems. Here is the letter I just finished e-mailing to the PT.


"Tonight Bug's ankle started hurting her really badly. At the time it started she says she was sitting down. However, I know that she was going from sitting to standing over and over during play practice, and since I wasn't there I cannot be 100% sure when exactly it happened.

Anyway, when I arrived I could tell something wasn't right by her face. When she came over, she was hopping. I sat her down and removed her brace and asked where the pain was. As she was showing me, something popped (not audibly). That was the first 'pop' she felt, she had not felt one prior to the pain. She said the pop was not in the exact same location as the pain, but in that area. It did not make the pain any better, if anything it made it worse. I ended up carrying her down several flights of stairs and across the parking lot. Trying to get into her seat in the car she fell. Then when we got home, my husband got her out of the car and carried her into the house and laid her on the couch. Currently she is lying with her ankle up and icing, and I will give her some ibuprofen before bed too. It's been almost an hour since I first saw her and learned of the problem, and she's still in pain. :( Hopefully it will work its way out soon.

Anyway, I wanted to send you an image pointing to where the pain is at. To me, it means nothing, but I am hoping it makes sense to you.

My other reason for writing you is because we just got her new brace on Friday, and today is her first full 'normal' day in it. I'm wondering if the brace could have anything to do with what's going on? I know it is comfortable, but is there any chance it isn't supportive enough? Or is it just a fluke? Here's the brace we got:
http://medspec.com/OnlineProducts.cfm?ID=1

Thank you for any input!!! "

So guys, here's the image:



Any thoughts? In the past her ankle pain has been more on the outside. I am at a loss here...

Yippee!

Bug and I drove 45 minutes today to try on new ankle braces. Guess what? The very first one fit perfectly, and she LOVED it! She was all smiles, didn't complain once, and I said to the guy "see, I told you that she's a good kid!". He agreed.

The difference between our experience today and the one a couple of weeks ago is night and day. I cannot believe what a difference it can make just having a different employee!!! Of course, this one was the manager of a couple of locations, but still. Not only was he nice, he actually talked to Bug directly, and, had her walk around in it for a period of time. The other guy never even had her get off of the table to see how it felt.

So - it was worth the drive!!!

Here's what she got:
ASO Ankle Stabilizing Orthosis

She also tried on one like something like this:
ProCare Lace-Up Ankle Brace . It was funny, because when we got home she told me that the second brace felt like she was wearing a boot even though she had a shoe on. :)

Anyway, she is SO happy, and so am I. I don't need to try to figure out if we can find a new brace, worry about who to order it, or if it will work well. She's got one that fits like a glove and all that's left is getting the decorations on. Woo-Hoo!

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?