I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well.
Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping.
She also is still in two ankle braces due to ankle instability. We had to stop physical therapy a few months ago because she ran out of visits, and insurance said "she does not show enough improvement" to allow her additional visits. I want to scream at them that how can you say that about a 9 year old, but I haven't... yet! Anyway, PT at home is not anything close to the same as PT at the Dr...
This week she started having problems with her right hip. Both times she insisted on going to school. I don't know that letting her was the right thing to do, but she has missed a full 15 days so far and hates missing any school. We have an IEP meeting coming up soon and I suppose this is something to address. She will be starting back to physical therapy right after Christmas. That was the soonest they could get her in for a new evaluation. At that point we'll find out how often to treat her, but what stinks is that our insurance reduced approved visits down to 20 this year (from 24 last year). Which unfortunately means we have to take that into account as to how to treat her, instead of doing what the Dr. says which is constant treatment. (she also still has posture issues, and ankle problems)
On top of that, we're not even through two full quarters of school. I am feeling guilt because she is missing so much and I also am missing a lot of work. (I work at a different school) I love my job, but I feel bad for the kids I work with because I've missed a lot, and I feel bad for Bug because there are times that I would have insisted that she stay home longer if I was more available. But I can't stop living for this, and neither can she. I just wish I knew if this was a rough patch or if we are going to continue along this way. With both the EDS and migraines they say she will likely get worse during puberty. Hopefully we can hold off on that as long as possible!
In addition, I spent two months in physical therapy after seeing the orthopedist (same one as Bug) for my own ankle and knee pain. As it turns out I have OA in both knees, Achilles tendinitis, a heel spur, five bone spurs in one knee, three bone spurs in the other knee, plus most of the cartilage gone in that knee. I knew I had a lot of pain, and a high pain tolerance, but it wasn't until taking 1000 mg of Tylenol a day plus two alieve and getting ultrasounds for pain that I realized how much pain and how much it was effecting me. WOW. I was told by the orthopedist to come see him again when I need him. I was also sent along to cardiology and genetics. Its been long suspected that I passed the EDS on to my daughter, and with the OA and severe spurring at 33 it's time to find out. I also have been having issues with going from kneeling or squatting to standing with getting really dizzy like I'm going to pass out. He wants me checked for POTS. So - I guess maybe I'll start getting some answers soon too.
So like I said, it's not a good thing I haven't written. At the same time, I felt that I owed some kind of update to let you all know Bug and I are still around, I just haven't felt like writing about it lately.
I hope you all have a wonderful holiday!
I knew it would, but I didn't know when. I also didn't know it would be so obvious, or how it is that I under-estimated Bug so much. We've spent so much time teaching her to advocate for herself, how on earth did it never cross my mind that she would tell me when the time was right?
Tonight, Bug asked me to have to school get her a laptop so she could either type or speak (Dragon Naturally Speaking) to a computer. I swear, I almost had to pick my jaw up off of the floor. I asked her why, and she told me that it was so much easier to do her work and more comfortable, faster too. I asked her if she wanted to talk to her teacher, or if I should, or if we should do it together. She said together, because while she agreed with me that she should talk with her about it because she can explain what she wants/needs and how she feels better than I can, she said that sometimes she feels shy about talking. For the second time in a five minute period I found myself totally impressed and floored by my daughter. Why? Because it is HUGE that she recognized that she can feel shy/uncomfortable talking about these things, and, even bigger, that she could explain to me that was how she was feeling. WOWOWOWOWOW!
So, I left a message for her teacher and hope to set something up quickly. I know how the "system" works, and I know it's unlikely we can get what we need fast. However, maybe we can get the process started, and, in the meantime set-up something temporary.
Huge news. Major maturity growth, and self-expression. I am just so pleased and happy with my girl.
More before long, genetics appointment next week, and hopefully a computer update!
I promised to do a Bug update, so here goes!
Bug has been having stomach pain since August 9th. It has been severe enough for her to invent a whole new level of pain on her scale. :( We tried everything. Ibuprofen, pepto, extra dose of generic prilosec, the IBS med that I wasn't going to try, and upping her Miralax. (just in case). NOTHING has worked. The pain never fully goes away, and gets worse as the day goes on. It has been very stressful for Bug and I. I have felt so bad for her but have been unable to get it under control.
To complicate matters her pedi had just left for vacation when we called about it. Instead of seeing someone new (I asked if anyone else knew about EDS, and they had no idea) I decided to wait until he got back. I still don't know if that was the right choice, but with Bug being complicated I just didn't trust seeing someone new in the middle of this. I figured we could always hit the ER if we went beyond horrible pain into, well, I don't know. I just knew that was an option if suddenly things got out of control.
So... the pedi still thinks it's abdominal migraines. He wants her to take 400 mg of ibuprofen 3 times a day all weekend, and then call Monday if things are not yet under control. At that point he will put her on a script for migraines, or, if her symptoms have changed he might ask to see her again.
He also checked her thumb, as she had popped it at Camp a couple of weeks ago and has been having pain up her arm (into her shoulder) ever since. He said that the thumb is in the correct position (it resolved itself not long after it had popped) and that the pain is likely from swelling that is still going on. Peace of mind for me after hearing that. This is the first time she's had lingering pain after her thumb has been out.
He also looked at her ankles again, and agreed with the PT that bracing the left ankle was also in order. So, Bug is getting another brace. She wasn't happy, but, when I presented it as "if you have the choice of wearing another brace and getting to be more active, or not wear it and sit out more which would you rather do" she immediately picked the brace. It's amazing what perspective does!
Today she also saw her OT and got her silver ring splints adjusted, as well as getting 3 replaced due to growth. We always enjoy going to Keith, he's just so nice!!!
We also paid a visit to our assestive tech friend Jim at ICATER. He sat Bug down and worked on Dragon Naturally Speaking 10 with her. She did GREAT! The program is recognizing her so much better these days, to the point where he even taught her how to use her voice for corrections. While that is not a big deal to us adults, it's a huge sign that her speech has changed and matured a lot! Woo-hoo! Great news, as sometime between 4th and 5th grade I predict she will need to move into Dragon at school for her longer assignments.
Finally, school starts next week. Bug is a 4th grader. I just don't know where time goes. My "little girl" has now had a birthday and is 9. She is looking and acting like a big kid. While that is really cool, I sometimes miss my little snuggle Bug. :) Anyway, I've been busy trying to make a first aid box for her that includes a corn heating/cold pack, an itch stick that doesn't burn her skin, vet tape and gauze for cuts as band aids are causing her skin damage, plus instructions on what all of her medical needs are and how to handle them. While most of that is in her IEP there are many updates and things I'd like to highlight for her new teacher.
I need to get to bed, that about sums it up for tonight!
Ok folks, I am straying from my normal talk about Bug, and yes, there is plenty to talk about. Tonight, I am hopping on just to say something about me. While Bug was getting her ring splints today at the U of Iowa I mentioned to Keith (the OT we've seen 4 years now) that I didn't know what a "normal" range of motion was for a finger. He looked at me, and I said, "My fingers have always hurt when I write, and I just wondered if they are within the normal range of motion at the tips". (They bend straight back at the bases - so I know that isn't normal! HA!)
Anyway, he looked at them and made some comment along the lines of "Good God yes they are hypermobile" and asked if I'd like him to make me a plastic splint to try. So how could I say no? I did, and people, it rocks!
I cannot explain to the "normal" people out there how different it feels to have stability in that joint. Weird just isn't a good way to do it. Strange but amazing is more like it! It's been almost 12 hours since I got my splint and I just love love love it! I am already now considering seeing about getting my own genetics appointment made to take the leap and get my own official diagnosis (they already were pretty darn sure I am the carrier, which means I also have EDS) just so I can get my own splints on any fingers that need it. I don't care what they look like, I don't care what they cost. It feels too good to have that extra strength to worry about those things.
The true test will be next week when I start working at school again, as I do lots of writing. But today I wrote a letter and could tell a difference, and I was surprised at the difference I felt typing. Wow!
I had such an "ah ha" moment right after getting the splint. Keith wanted me to try it out by writing something. I reached over to get the paper and he said "Stop that! You can pick that up like normal now. Use your first finger and thumb". I looked down, and sure enough I was scooping the paper with my whole hand. I laughed, and corrected myself. I have never noticed that before - and I am sure there are plenty of other things I do oddly too. Just like every other EDS'er.
Before I take the leap, I need to make sure that if I ever need to get back on my husbands insurance I still will be able to. I moved onto my own policy last year with the school. While I don't plan on leaving the school, it's just better to be safe than sorry.
Thank you for listening to something totally non-Bug related. I'll be back to do my normal Bug updates tomorrow! :)
One of Bugs EDS friends (in fact, her only EDS friend) is in a contest for a local auto dealership. She sang and is in the top 5. Now, she needs votes to stay in and hopefully win!
As we all know, EDS keeps kids from doing so many fun activities and sports. Singing is one of the "safe" activities we can do. So lets all band together and vote for Samantha Hale, she sang wonderfully and it would be great to see someone win who continues to overcome so much!
The website doesn't require you to register to vote, and it also doesn't say how often you can vote, only that the vote goes for 4 weeks with one child being eliminated each week.
So - take a minute and vote for Samantha, gooooo Sammy!
Thursday, August 13, 2009 | | 3 Comments
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?!
We saw the GI last week for Bugs 6 month follow-up. I explained that while she has been doing well with the reflux, that she was still having these episodes of severe stomach pain that even additional reflux meds don't touch. I reminded them that our food allergy tests were negative (for the things they tested for) and that I still thought there was something else going on but I didn't know what. Well, the next thing I know they are asking about things like noise sensitivity, headaches, and other migraine related questions. I kind of chuckled, and told them that I had it on my list to talk about the new pedi in two weeks about some headaches and spots she sees.
Well, as it turns out they think she is having abdominal migraines. I had never heard of them! The symptoms fit Bug to a "t" - but I was still hesitant to jump on board. We've had so many "this could be it" diagnosis's with her stomach that I just hate to buy right in. But, again, the symptoms fit so perfectly - it was hard not to get excited. Also, kids who get stomach migraines also tend to get regular migraines as they get older - and Bug's head problems have just really started during this past year. The severe stomach pains started as young as 5, and looking back at my notes I can even see the same pattern then as we have now. That pattern is everything is fine, then she gets a sudden stomach ache that keeps her from doing anything. They last 1-4 days. Just the same as abdominal migraines.
So - the GI told us to give Bug ibuprofen the next time she has a stomach ache. I looked at her like she was crazy, but she told me that was the way to treat it. She gave me a script for a different med if that doesn't work, and talked to me about a daily med as a last resort. I left the appointment feeling a cross between hopeful and totally shocked that this existed, and elated that we might have an answer.
A few days later Bug got a horrible stomach ache. We gave her ibuprofen, and within 15 minutes she was a different kid. She was singing, twirling, happy as a clam. Prior to that she was barely lifting her feet to walk, or hardly speaking. I was excited that the ibuprofen had worked, but still not convinced that was the solution. A result has to be repeatable to be sure that's what did the trick.
Less than a week went by and another stomach ache came full force. Bug said she had a headache too this time, and I gave her ibuprofen. Within 15 minutes the headache was gone, and between 20-25 the stomach ache was gone too. I was in shock.
So - while I do not want her to have another stomach ache, part of me is waiting for one, because if the ibuprofen works again I'll know we have our answer. An answer we've looked for for three years. Yes, she has GERD, there is no denying that, but I have always felt there was something more to it. I just never knew or would have thought it was actually related to a migraine!!!
The other news is we dropped her generic Prilosec in half. If this abdominal migraine stuff continues to solve her problems we might be able to wean her down even more. That was music to my ears!!!
Schools out for summer, but it sure doesn't feel like it! We have been going non-stop since it got out 10 days ago. We've had some appointments and PT (that will be another post - but it's all good) and Bug has been having musical practice almost everyday now. The practices last about 4 hours, and so she's been loving it yet sleeping like there is no tomorrow! The musical is this coming M, Th, Fri, Sat, Sun, and then she's done. I'm sure she'll have mixed feelings about this, as she has really loved the whole thing. However, I know she's ready to hit the pool and just relax a bit too. ;) In fact, I think we all are ready for some R and R.
Our plans this summer? Well, after this musical is done I hope to get both of my kids on a routine with some reading and schoolwork. For Bug that means some Dragon Naturally Speaking practice, and multiplication/division. I also want to get her to the pool as often as we can to help her get stronger and because it's always the place she feels the freest. :)
Speaking of free... I broke down and got Bug a prepaid cell phone. It's from Kajeet - I got an awesome deal at Amazon on it. It was $90, and that included 100 non-expiring minutes, plus a year of GPS locator service. Oh, and there were 1000 texts included too, but she won't need those. Anyway, I'm not a Mom who usually believes in young kids having cell phones, but Bug is getting to where she needs some independence while at the same time sometimes she and I both get nervous about that. For example, no sooner than I was getting used to leaving her at play practice she had some hip issues, and then she didn't want me to leave her anymore, even for a few minutes. I want her to feel like she is safe and able to do things on her own like other kids her age, but I also realize that she needs to be able to reach me if something doesn't feel right. Since she isn't always comfortable telling others about her pain this allows her to contact me and let me know without making a big deal about it.
So - enter cell phone. ;) She is only allowed to use it to call Dad and I (and we have a friend as a back-up), not for personal phone calls to friends. So far she's only had to take it with her to one play practice, but she really was quite happy to have it, and didn't complain once about me not being able to be there with her the entire thing. I felt good too - I was able to go watch my son play baseball for awhile, and I knew if she needed me she could reach me. So - I've now gone from anti-cellphone for elementary kids to seeing how they can be really helpful, especially for a child with any kind of medical issue.
That's all for tonight folks! ;)
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:
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...
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.
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)
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.
I find myself constantly trying to figure out which of Bugs medical issues is the root problem, and which ones are fallout from that. Currently we are dealing with headaches and sore throats again, which could be from the following:
Acid Reflux. Burns the throat and can cause headaches in some people. On meds, but maybe they aren't working?
Allergies. Boogers. Goo. Drainage. Yum... But wait! She's already on meds and nasal spray... Hummmm....
Sinus Infection. Same as above, but she just finished antibiotics for it, so is it still there or is this something different????
Virus. Can mimic colds and sinus infections and what not.
Something else. I'm sure there are more options out there - but let's hope we don't need to look at them.
Maybe this doesn't seem like a big deal, but the fact of the matter is that Bug has had headaches and sore throats (and fatigue) off and on for a couple of months now. The first time it was also with a cough and stomach ache, and she was diagnosed with laryngitis and bronchitis. She took antibiotics, felt better, then got sick again about 10 days after finishing the meds. She had almost identical symptoms this time around. (note to self, her voice never sounded affected, just sore throat and neck soreness on the outside too) About 15 days after finishing that round of antibiotics she wasn't feeling well again. This time it was headaches, seeing "spots" (she says she sees these on a regular basis - need to ask again when she's feeling well), and sore throat. New DX - a sinus infection. More antibiotics. Now only 1 day after stopping them she's complaining again.
Who has the answer? What is the answer? Is she just having bad luck this year? Are her meds for the reflux or allergies no longer working? How is it all tied together? It is even tied together? Oh, and then there is the fatigue. She's been really worn down. Is it from this stuff, or is it from starting back to recess/PE?
I call this the Chicken and the Egg Syndrome. In my mind when I think of not knowing which came first I always hear the background music to "which came first, the chicken or the egg" from Sesame Street. So, tonight while I was sitting here pondering how to handle my daughter's ailments, I decided to see if I could find that song online. I did! So, for your enjoyment, I present the really old grainy Sesame Street clip of the chicken and the egg. I hope you enjoy it some too - and maybe next time you can't figure out which of your child's symptoms is the most important or the cause of another one, you too will think of this silly tune!
While this isn't directly related to EDS in ways it is. You see, one of the things I worry about is my daughter's dreams. Will she be able to accomplish whatever it is she dreams of doing? I know other parents with Ehlers-Danlos Children wonder the same thing.
When I saw this video today, I actually started crying. It's from the British show "Britains Got Talent". It's a clip of a 47 year old woman who goes up and starts talking about how shes always dreamed of being a singer, and when asked why she isn't one she says she's never had a chance until now. You can see on everyone's face how they don't expect much out of her, but then she opens her mouth and begins to sing "I Dreamed a Dream" from Les Miserables. You have to listen to the entire clip - I did three times so far.
It's not like I haven't heard this song before; Les Mis was the first musical I ever saw and it continues to be my favorite 20 years later. We've seen it many times and the music is on our iPods. Bug has even been learning "Castle on a Cloud" at her vocal lessons. What makes this so magical for me is the raw, undiscovered talent that has been hiding in this woman for so many years, just waiting for the right time to come out. She didn't give-up on her dreams, she wasn't afraid to take a risk, and to top it all of the song choice was just perfect for both her vocally and the lyrics were so fitting too.
She was a wonderful reminder that my Bug's dreams might take longer to acheive, and they might need adjusted, but she can still have them and accomplish them if she waits for the right time and place.
Rock on Susan Boyle!
As I mentioned in the post before this, our local PT offered to come to the school and meet with our PE teacher, principle, and the AEA's PT. This meeting was "unofficial", held to get a better idea of what is going on at school in PE and what the AEA PT was doing with Bug. It was also so our PT (Julie) could share her concerns about Bug and what she is struggling with.
First of all, I need to mention that Bug has been out of PE and all recess for almost 2 months now. She has been going and helping kindergartners and first graders with reading during recess, and loved it! I had suggested her helping other students with reading to her principle as an option as it would make her feel good to be the one giving help instead of getting it. He thought that sounded great, and set it up. Bug has really been happy about it, still sad about missing recess, but not sad like she was before we set this up. During PE time she has been allowed to work on a laptop so she wouldn't have to just sit and watch her peers. Anyway, even with having those things to do she still was missing those activities (what kid wouldn't) and wanting to go back. Our PT was torn on what to do, as she still felt her ankle was weak but she also knows that exercise is good for kids. The question is/was, could she get that exercise in a safe way at school?
The meeting was ok, I think that every person there really wanted what was best for Bug. Of course, it is still a struggle to agree or figure out what that is. We ended up with starting her back into PE this week with the gym teacher watching her carefully and trying to place her in positions/activities that wouldn't be as fast-paced. Then on the non-PE days, she would go to the two 15 minute recesses with the teachers out on duty instructed to keep an eye on her that she didn't start running around. Next week she would do recess on the PE days too, and if all went well then she would start participating the following week in PE, both 15 minute recesses, and also the 30 minute recess. I think our PT was on the fence about this plan, but willing to give it a shot since Bug really really missed those activities.
When we saw her for PT therapy after school yesterday, she said she would be happy to write a more detailed note to the staff about what was and was not ok as far as sports/activities. You know, something addressing the age-old question of "are jumping jacks ok?" and so on. I am SO excited about this, as for the last 2 years we have wanted a list like this but haven't been able to get one. She also said she would e-mail the PE teacher to talk more about what activities he had planned so she could get more specific about what might or might not be ok for Bug while doing them. All of this is great - and I'm so happy that she is willing to do this!
The other thing we talked about at PT was the fact that Bug's AirCast had actually ripped across the bottom over Spring Break to the point where Bug said it wasn't helping. Our appointment with an EDS pedi who specializes in Sports Medicine and Bracing isn't until June 29th, and they don't have a waiting list to get you in sooner. So, I wasn't sure who to get a new brace from, or what to get. The PT said there wasn't anyone local that we could see in the meantime, and so we decided I should call the poor geneticist about it again.
Today I made that call, and found out a couple of things. First off, I should keep calling the Sports Medicine Pedi at least weekly to see if we can grab a cancelled appointment. Secondly, she thought we should try an elbow sleeve brace from the drugstore on her ankle. When I expressed concern about that not being stable enough, we got into even more detail over what exercises Bug has been doing in PT and where her progress is at with them. After hearing about that, the genetics nurse said "Well if that's what's going on with her ankle, she has no business being in gym class!" She went on to tell me she should be having modified PE, and some other stuff I won't get into on this blog. (it's nothing bad, don't worry) She agreed to talk to our PT about Bug so they can share what each of them know and come to some sort of conclusion I can then share with Bug and our school. She also offered to speak to the school/AEA if needed, and write any medical letters to support the requests/recommendations.
So - I hung-up with her and called leaving her phone number with the PT. I did all of this in the office at the Middle School where I have been working since January as an associate with special needs kids. (I love my job by the way. It's wonderful to help other kids!) As soon as I hung-up I couldn't help it, I started to get teary eyed. One of the secretaries saw me and asked what was wrong, which then opened up the floodgate. She gave me a hug, which caused me to let my guard down more, causing me to cry more, at which point the principle walked out and asked if I needed to talk. Before I even thought about it, I just said yes, and the next thing I know I'm sitting in his office talking about how hard it is not knowing how long this is going to last, what services we need, how to be nice to all of the staff/AEA and still effectively communicate how important it is to help Bug at the same time... I told him how hard it is with all of these Dr.'s trying to communicate through me, but I can't seem to get them all together to talk. It's no one's fault, it's just hard when we live so far away and have Dr.'s all over the place. I told him how I feel foolish, for just having a meeting yesterday about PE and deciding one thing, only to find out the very next day another Dr. said no way. Not to mention the fact I had just written Bug's teacher a note this morning thanking her for her patience while we worked all of this out, and how we should be in the clear through the rest of the year. Now just an hour later it's all changing. And worst of all, I had just kissed my daughter good-bye not 10 minutes before this call, and she was so happy to finally be able to go to recess again. She was on cloud nine, and now it's all at risk of being taken away again. How do you explain that to an 8 year old in a way that she can not only understand, but accept????????
The principle (aka my boss) was nice about it all, he let me gush on and then told me while he didn't personally have any advice, he thought I might want the phone number of the head of the special education department in our area. He told me that even he might not have any answers, but that he's a great guy and might have some suggestions for me. I thanked him for the number and tucked it away, I think that I might give him a call after I learn more from the PT and geneticist. Even if I don't do it now, it's good to have for later.
I am so emotionally tired tonight. I feel so over-stimulated. I feel like I'm at a dead end yet I know I'm not. I know that all of this will pay off in the long run, but right now any sound in the house is just too much. I need to write all of these thoughts, emotions, fears, and questions down while they are fresh in my head, not only as a personal release for myself, but also in hopes that my honesty about the issues we face can help someone else.
That said, I'm done with this post, but will still be doing another one tonight after I get my children to bed... Stay tuned!
Wow - it's weird looking back and realizing that what has felt like a couple of weeks of ankle issues has been going on for almost 2 months now. It's hard to believe that with all of the time that has passed we are still having such a hard time. Thank you to those of you who wondered what's new, and pointed out I haven't updated lately. It's nice to have a kick in the butt from time to time! :)
So, I'll try to bring you all up to date. After Bug started having her ankle randomly "give out" in early Feb. I did take her to a local PT instead of trying to make the trek to Iowa City for PT again. I am thrilled about this decision for so many reasons, the most important one being that the PT we have is AWESOME!!! She is just so good about researching EDS (online, talking to various doctors, whatever she can get her hands on) and on being creative in trying to make boring exercises more interesting to Bug. She speaks directly to Bug and listens to what she says about her body, and adjusts from there. She even attended a meeting with our school yesterday. (more on that later) On top of her just being plain wonderful, she is close-by, which has been such a blessing considering we've now gone to PT for 11 times (if my count is correct). After going twice a week, practicing at home, bracing, and skipping recess and gym, we still aren't close to done. While it would be easy to get depressed over this fact, I am not. I am just too happy over finding another great member to add to our team - someone who my daughter enjoys working with, and who I respect and trust. It's amazing how big of a difference that can make in your attitude when dealing with long-term medical issues!
So - I've videoed a few of the exercises that the PT has been doing with Bug. There are many others to video, but it's hard to do as I need to spot Bug. ;) I'll try to do some more as I can, and I'll try to post some of what I have here later tonight. In the meantime, the main issue we are having is her ankle is still weak. She has a very hard time maintaining control of it, and she doesn't usually last more than 10 reps of anything. Most things she has a hard time getting to 10 movements correctly. One example is kicking a beach ball while keeping her ankle straight. It sounds so easy but it is hard for her. Her left foot does so much better than the right...
Right now I am not sure how much longer it is going to take to get her ankle healthy. I'm not sure if the PT knows yet either. Right now she still needs it braced, and her activities limited. (more on that when I write about school) The PT has also been working with her on her posture, balance, and her hips/abs a little. It seems like the list of what we could be working on is endless - and I'm not sure what we should be doing in the "big picture". However, I am happy to have a PT who is looking at Bug's whole body and not just the ankle we came in for. I am hoping we can continue to work on the other things as well because I really think Bug's best chance at a happy, healthy young adulthood is going to depend on having strong muscles to help her joints. At least I can hope that good muscle strength will help!
I just LOVE this video - it makes me smile every time I see it. For some reason I find it even funnier now considering I'm using it in a post on physical therapy. I must have a crazy sense of humor!
So, here's the update. Things had been going along just fine until right after Valentine's Day. The suddenly Bug started falling. The first few times it was once or twice, then last Tuesday she fell four times in one day, the final fall causing ankle swelling. That's when the light bulb went off and I thought "Hey - this isn't right!". Yes, sometimes I can be slow like that. ;)
We put her back in her AirCast ankle splint from her sprain last October, and sent her to school with instructions to not do PE or recess. I called the geneticist and they recommended she start back to PT to try to get some stability back in that ankle. Bug was also complaining of her hips being sore (front and back, both sides of her body), pain/discomfort behind both knees, and then her ankle on the right side. Her description to me was that it "feels like the bones are disconnecting". Which of these areas is the root problem I don't know, it could be a chain effect or it could just be all of them flaring up at once. The thing that was hard for me is that she describes it as if this has been going on (the pain) but it wasn't until she's falling down that she mentions it to me. So I'm left trying to figure out if there is an ongoing problem that she just doesn't complain about because it's now "normal" to her, or if she feels like it's been going on for a long time when really it's only been a week or two. She's gotten to where she hates me asking "too many questions", but at the same time I have a hard time knowing how to help her without asking. Ack!
Anyway... today we saw a local PT who seemed really nice. I decided I would rather try to find someone local who would be willing to learn about Ehlers-Danlos Syndrome than to try driving up to Iowa City again as we can and have less availability for therapy. I really like her so far, she was excited that we brought some articles in, she took a lot of notes, and wanted to talk to our old PT as well as the school PT. She also gave me her e-mail to send along more information on EDS. The icing on the cake was when she requested that we not start treatment until she met with us next, because she wanted to do some more research and talk to some people before doing anything with Bug, just to be safe. WOW! So, we head back Thursday to figure out what next. In the meantime, Bug is out of PE and recess again this week, and maybe longer. She's bummed, but hopefully she can do something fun but quiet during those times this week. I'm going to send in UNO tomorrow and have her ask her teacher if she can have a friend stay and play it with her so that it still feels like she is getting a break, but she isn't tempted to crawl on the floor and play.
Anyway, I'm not sure what lies ahead, but I am thinking/hoping we have found another helpful person to guide us through. It would be wonderful if this works out and we have someone local for anytime Bug needs PT or if we need advice on activities for her. I'm crossing my fingers!
First of all, I want to say how happy I am that my online buddy Girl, Dislocated is back. I've missed her blog posts dearly! :)
Next up, I suppose I owe a couple of updates on Bug. She had a wonderful Christmas full of family and love. Ok, maybe she did get a bit spoiled. But you only live once, right??? LOL Her favorite gift this year was to the entire family, it was Rock Band 2 for Wii. I know I've posted before about how much I love the Wii, but I'm going to say it again, the Wii is AWESOME! It is just so great to be able to watch a child who is restricted from various activities be able to play them on the Wii. Rock Band 2 was worth every penny, it has brought her so much joy. She sings and plays the drums, and we can do it all as a family. The guitar is just too hard on her fingers, but that's ok, she just loves being able to hangout as a family and play. It's been great!!!
Now, health wise we have no real changes. She's been dairy-free since my last post (over a month now) and yes, her stomach problems are greatly reduced. In addition, I don't think she's missed any school at all during that month, which is wonderful. Historically winters are hard for her. I'm sooo thankful for all of this good news!
So - the other thing that is news is we just had our IEP meeting this week. Bug is still qualifying based on her physical therapy needs, but we no longer need OT servicing. I am happy about this, and everyone agreed she has made wonderful progress. We are going to continue to work with Dragon Naturally Speaking at home, but only so if/when we get to a point where she needs it we're prepared. They are starting to learn typing in the fall, and the plan is for her to give that a shot and see how she does. If she has joint problems then we'll adjust our plans accordingly. I really am hoping she can handle the typing, just because it's less noticeable to type on a laptop in class than it is to speak into a computer! :) But regardless, we'll make sure her needs are met.
We're tried of the cold, but making it through. I can't believe that it's only a couple more months until our second Arthritis Walk. Bug is so excited, she can't wait to go again! I love the fact that she is motivated and enjoys it so much. I know it makes me feel good to get out and do something about EDS.
That's about it for now!