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!

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...

In light of yesterday's super long post, I'm going to try to keep this one short. We seemed to have gained an approval on the ring splints from our insurance today - and plan to have them fitted on Monday. Yippee! It looks like it is going to be 100% covered as well. Double Yippee!

Also, Bug woke-up this morning in pain again. The same area as last time, but the pain was not as extreme. She was able to move, so I gave her Tylenol and told the school no gym or recess. Mid-day she was fine. I talked to our genetics nurse who does think that the last two times this happened it was a dislocation, and that this morning could have just been a sub lax. She gave us a referral to have a physical therapy evaluation on Monday. We are hoping to just be able to walk out only needing exercises we can do at home, but there is a chance we might have to go back. I'll cross my fingers! It will be nice to get another opinion on where her main problems are and how to help them.

I'll keep you all updated - have a Happy Thanksgiving!

I had a couple of minutes (that's rare these days!) and thought I'd update this blog just a little bit. First of all, I think we are going to order Bug silver ring splints next week. I am still waiting for the final medical codes to give the insurance, but should have them in the next day or two. However, they were pretty sure that it would be covered, and since we not only met our deductible for Bug, but also the max out of pocket expenses for the year, the rings should be covered 100%! Ok, maybe I shouldn't be so excited about that, but if you're going to hit the max out of pocket expenses you might as well be able to make a claim or two after that. LOL

Why are we trying to go silver? Well, while we *love* Keith and his custom rings, with the amount of joint swelling Bug seems to be having this year we've already gone through 3 sets and currently only have 4 rings that fit. So 4 out of 30 is not so good. He makes them beautifully, and they fit just right at the time. But as soon as her fingers start to swell we can't get them on, or sometimes off. While a custom fit has worked great for us the last two years, when your joints/fingers swell it means that there is no room for expansion in the ring, and it just won't fit. After reading about the silver ring splints from several adults with EDS, and talking to the people at the Silver Ring Splint company and our OT's office, everyone seems to agree that while you shouldn't make a habit of stretching and contracting the silver splints, they are able to be slightly adjusted when fingers swell. Something we seem to really be needing this year.

Yes, they are expensive. But our OT bills are currently running 1,200-1,500 a visit for our current custom rings. Keep in mind that's for 10 rings, time spent, and materials. However, the silver rings are $69 for 8 of the ones Bug needs, and then the two thumbs will be between $250-$350. So the initial cost will be a bit (but 100% covered I hope!) plus we'd still have the OT's time billed. BUT - hopefully we would not have to keep going back every few weeks and getting new ones made. On top of that, as Bug grows she might be able to move some of the rings to different fingers and only replace a few at a time, something that is not currently an option since they are custom molded.

Now, for parents who are just ordering ring splints for their children for the first time, would I recommend these? Heck no! But, Bug has been wearing them since age 5, that's 2 years now. During that time, she's had one stepped on, one vacuumed up by a janitor, and one lost. That's not too bad. The first two things happened within a few months of starting wearing the splints. The last one was a year ago. That's a pretty darn good track record for a little girl. :) However, not all kids are going to be that responsible, and while we're having swelling issues now we had great luck with the plastic custom splints until this school year. I really think that for kids without swelling and/or just starting out they are the best way to go. But, if for some reason they don't work, this is another option for you to consider.

Another thing to note is that we have Blue Cross, Blue Shield. According to our disabilities center, they cover silver ring splints for Ehlers-Danlos Syndrome. I was also told by the Silver Ring Splint Company that they have customers who have gotten them covered by BCBS. Blue Cross Blue Shield also told me that they believe they are covered as durable medical equipment, but again until I have the CPT code from our geneticist, they won't guarantee that 100%. My point is don't give-up hope that you can't get them covered, apparently Ehlers-Danlos Syndrome can be an exception for splints even if they aren't covered for RA or other conditions. Personally, I think that's silly, but I am thankful if we are covered. Another thing is that your insurance is likely to ask for a "hic pic" code. (I don't know if that's right, or if it is supposed to be "hick pick") They like to have this to help decide if they cover the equipment. The Silver Ring Splint company does not have one, and no matter how many times you tell your insurance that they might keep insisting there is one. They are wrong. Know this before calling, and tell them they can call the Silver Ring Splint company themselves to verify if needed. It will save you a lot of time, trust me! LOL

Also... I think Bug had a dislocation or sublax this week. It was on Saturday. She woke-up crying and screaming in pain, begging us to come get her and carry her into the bathroom. All day she laid on pillows on the floor in pain. We gave her a heat pack, but it didn't help. She didn't want any Motrin or anything, so we just let her be. She didn't move almost all day, and when she did have to move she cried in pain. At 5:30 I was cooking dinner and looked up and there she was, smiling at me and said "My leg popped, and now I feel great!" She said it was a "tiny bit achy" for about 10 minutes, but she was walking around the house, talking, and like a new kid. From that point on, she went on to start running and playing with her brother.

This is now the second time this has happened in about a 6 week period. The first time was similar, pain in the exact same place and same amount of pain. However, she didn't pinpoint a pop like this time. This time she heard and felt it. I feel silly looking back now because I should have guessed it could be a dislocation, but because of where she was pointing it wasn't obvious that it was a joint. Thinking back, the pain could have been migrating, or, it could have been in the joint and it was hard to point to. The hip isn't exactly as easy as a fingertip. ;) A couple of people on the eds mailing list have given me some suggestions and ideas for the next time it happens to get a better idea of what is moving and how to help it.

I am kind of sad about it though. She's had a lot of hip pains off and on since we first found out about everything. She's popped a lot all over her body. But until now I've not really been able to decide if she was sublaxing or dislocating or just making noise. However, this hip stuff I'm pretty darn sure isn't right, and is one or the other. I guess it was bound to happen, I just wish that it would have been years from now instead of now.

Oh! And Bug LOST HER FIRST TOOTH today! Woo-hoo! I was starting to think it would never happen - but it did! She's 7 1/4 years old, and pleased as punch! LOL