I am going to be lazy and just post here what I sent to one of our EDS support groups. I am just not feeling like writing it all over again right now. :) I hope it makes sense! Obviously there are a few things that were already addressed in the blog, but there's also some stuff that wasn't. The PT part is one that is now outdated, since insurance is telling us no more for the ankle... Anyway, hopefully this fills in some blanks!
Well... it's been quite a month!
First of all, my daughter made it through the community musical. It was incredibly taxing on her at times, there were several nights they had practice that she was in pain. But she just sat down and limited her participation to what she felt she could do, and made it through. I was proud of her for that, but also caught myself in tears several times because I kept thinking "it isn't fair that she can't be up on her feet like all of the other kids!" Needless to say, I kept those moments brief and to myself. :) She did an awesome job in the musical, and almost 4 months of hard work and practice came to a sudden end.
One thing I did do is buy her a Kajeet cell phone. It's a company that caters to kids. I did it because she'll be 9 in a month, and I'm starting to see her pull back from some activities because she's afraid of being without me. We're at a point now where her peers are going to notice. So - instead of her being the "baby", I decided to get her a cell phone so she can call me should she need anything, and I can be there in less than 5 minutes. It brought her (and ok, me too!) and incredible amount of peace of mind. I wish I had done it sooner! The phone was a great deal - $90 at Amazon with 100 non-expiring minutes, and 1 year of GPS location service on it. I also love all of the parental control features, but since her phone is only for emergency use right now we don't need them. That said, when she is older and allowed to use her phone for leisure too I am excited that I can control so many aspects of when she uses it.
Medically we are still in PT. We are doing every other week right now but I'm not sure if we're keeping it that way or increasing it some. I'm waiting to hear back from the PT on that and some other questions. Her new ankle brace is still comfortable, although the heat makes it itch and she isn't a big fan of that. PT we're still doing water therapy and while I'm sure it helps we've had no huge improvements lately.
We saw the GI - and they think that Bug has been having abdominal migraines. It really fits - and we've had success treating her stomach pain with ibuprofen since given that idea. Wouldn't it be amazing if this is the missing piece we've spent the last 3 years looking for? Why she was having this severe, breakthough pain that didn't respond to any acid blockers? Anyway, there's more to the story. We also met with her new Pedi (who is also her Orthopedist) and on our list was headaches. I asked him if Bug could be having migraines in additional to abdominal migraines because sometimes she has the headaches first, then stomach aches. (I have found this out while keeping notes the last few weeks) He said absolutely, she could be having both. I mentioned that I had read most kids outgrow abdominal migraines around 9, but start getting the other kind then. He said this is true, so the good news is hopefully some of the stomach pains will start to ease up before too long. However I know there are some people who continue to have stomach pains with migraines. So, maybe the pain isn't quite as bad?????
He recommended that we continue with the ibuprofen for now, as long as it is working, but that if it doesn't we do have other options and he can manage that for us. He looked at the script the GI gave us as our second med to try and agreed with what I suspected, which is that it's to treat IBS and was just another shot at eliminating things Bug doesn't have to figure out what she does. He felt that we shouldn't even try that, as the abdominal migraines and migraines seem to be related - so to call him if the ibuprofen doesn't work.
We also got to ask him about her ankle brace, as Bug has been very concerned about when she will get it off. I didn't want to commit to anything because I wasn't 100% sure either, so she asked him. Dr. Phillips told her that he wasn't sure, it depended on many things. One of those is how much she works at home on her PT exercises. Another is how her body reacts to the PT. He did tell her that even if it was strong enough to not wear it all of the time she would probably still need it for gym class and activities, to make sure she didn't hurt it again. In the meantime, he let her know if she was relaxing around the house she didn't have to wear it. (which we already were doing) She seemed to deal well with all of that. I asked about PT, and how often we should be going, and for how long. I told him it seems like there is always something needing work. For example, that day her other foot was "feeling like it was going to fall off" to the point she didn't want to walk around and shop like we usually do. He checked it, and said it was fine, just really loose. PT would benefit it too. So - the answer to the PT question was 1) what will your insurance pay for and 2) you go until it interferes in your quality of life and then you back off. Ummm - ok, so I know in some ways that is a good answer, but in others I'm still left scratching my head. LOL I guess we just go until we are sick of it? Or the PT is sick of us? Our PT order doesn't expire for a year, and has no limits on how often we can go. Weird - but good, right?
What else... Her allergies are acting up, so she's back on nasal spray. He is going to manage her allergies/asthma from now on too unless something weird crops up. No more super mean allergy Dr. - woo-hoo! Also, her therapist moved to MI. :( But, she put Bug in touch with a new one and Bug seems to like her. They set some goals to continue working on based on what she was doing with her old therapist. We haven't met with her solo yet (she met with Bug and her old dr. together) but I need to get an appointment set-up soon so we can take advantage of summer, ie. no school!
Bug did have another dental appointment - she didn't panic AT ALL! On top of that, she needed sealants and had a small cavity which we had to go back a week later to have done. She also made it through that appointment without ANY MELTDOWN! I was on cloud nine! All of the therapy has worked!!!!!!!!!!!!!!!!!!!!! Our last cavity was a disaster - this one was a breeze. Bug even said afterward that she couldn't believe she was so worried about it before, because it wasn't bad at all. WOW! It might also have helped that she didn't need shots with it, but still, I've had them done without Novocaine before and it still isn't discomfort free. It was such a good feeling knowing that we do not have to fear the dentist anymore! She has survived cleaning, fluoride, and the dreaded cavity/filling. I am so happy and proud!
Sorry for such a long update, but it just seems like we've had a lot of things going on lately. I am just now starting to feel like it's summer. We've had so many appointments my head was starting to spin - but I think we're pretty much done now for awhile, and, I think we've made some serious progress!
At least Blue Cross, Blue Shield seems to believe so. I am bitter to say the least.
I had written our PT a long list of questions after our Dr. appointment last week, asking about how to handle our PT from here on out, including his recommendation that her other ankle needed PT. I had brought in his script last week and dropped it off, because I knew we were almost out of sessions. While in the office, they told me I needed to call my insurance, so I did. I spoke to someone very high up, who is in fact a Dr. and a physical therapist and familiar with EDS. She told me that she would need to talk to the PT, not me, which was fine. I did ask her about my coverage, and she told me that PT NOT the orthopedist decided how often Bug should be coming, and that my policy would only cover PT that was showing improvement, and would not cover any maintenance. She really stressed the improvement part...
Fast forward to today. Today we went to PT and our PT informs me she spoke with the same insurance person I had, and that we would need to talk at the end of the session about things. I at this point knew how it was going to go, so I wasn't caught off guard. Our session was spent teaching Bug some extra exercises for her posture, as well as for her shoulder, plus more for her ankles. The PT gave me lots of printouts on these exercises to take home to work on. (see where this is going?) She also checked her ankles, and agreed that the left ankle seemed much weaker than the right (the one we have been working on). She had the student who was shadowing her also feel how loose both ankles were.
As this is going on I went ahead and opened the door knowing what was coming. The insurance lady had spoken to her several times, and basically told her that they would not continue to cover work on Bugs ankles past the 24 allowed yearly visits (we are on 23 today). That she should send us home with exercises and "see what happens" from there. She stated that while they could approve more sessions for another issue, it would be very unlikely it would be many (PT seemed to think about 5) so it would be in our best interest to "save" some. That with EDS there is only so much you can do, because it's the nature of having Ehlers-Danlos Syndrome.
I am so pissed. The PT was really conflicted, because like me, she knows that without improving these things now that Bug will have a hard time as she grows. She mentioned puberty, and how things will be worse for us then. I know that, but I hate to think about it. After all, we've been through 23 PT sessions for 1 ankle in 4.5 months. I don't want to think about it getting worse yet!
She was worried that something might happen to Bug and we need serious therapy and we won't be able to get it. Unfortunately, I have to agree after what I've heard from the Blue Cross Blue Shield lady, and from what she said about her conversations with the BCBS lady. I know I will fight if that did happen, but in the meantime, what about working to keep it from happening? I can't fight over every single thing - the odds are too high that at some point I will need these people. But the attitude that "it's just how EDS is, so we aren't going to waste our resources and money" really makes me SO mad! This is my daughter - she is not a number or a faceless person to me. It's already totally unfair that she has to spend her life with this degenerative disorder that no one can cure. But now we have to deal with the fact that our insurance sees the PT that is helping stabilize her some as a waste because it doesn't fit neatly into their timetable for healing, and it won't ever "fix" the problem.
I asked the PT about the other ankle, and what we should do for it besides our home exercises. She grimiced and said she'd recommend bracing it too in light of this. Nice - so now Bug can wear two itchy unattractive ankle braces around. Thank you BCBS - I really like how the solution to my daughters problem is all about being cheap even if it's costing her emotionally.
Bitter. I am so freaking bitter right now. I suppose the good news is that it frees a lot of time up from appointments. On the flip side of the coin that means an increase of personal time invested daily. How to keep Bug motivated on an ongoing basis to do them all is beyond me...
I hate Ehlers-Danlos Syndrome. I hate that this is likely just the beginning, and that no one seems to believe there is a point to trying to stop what is going to happen in the future. I believe that we should fight it as long as we can - but I can't do it alone. That's the problem.
Oh well, I'll just have to try to keep the PT up at home as best I can, and hopefully that will be enough. Right??? I guess I shouldn't just assume that because everyone says her ankles are loose, and she has times where they feel like they will "fall off" that it won't all be ok if we work hard at home. Right???
Time to put my positive hat back on, and stop complaining. It won't do any good anyway. ;) Plus, Bug needs me to be strong, because I'm the one she is looking to as an example on how to react. If I am depressed and bitter, she will only feel sorry for herself instead of learning to overcome this. My vent is over for now, and I hope that our PT at home is successful! There - that sounds much more positive, right?!