Finally got the bloomin’ ring splints. The darn things are more trouble than they are worth. The EDS splint for the MCP joint is pure torture. I don’t see her ever wearing it, to be honest. I tried it on and I found it incredibly painful and my joints aren’t even sore. Maybe there will be some situation where she will find it helpful, but it hurts – it presses against the ligaments in the front and back of the hand in a really painful way. As far as the thumb splints go, well, I think the upper ring is too small. When we were sizing (and resizing) them we went round and round about which size was best. Initially, we were told that the upper ring should be sized a bit larger to be able to accommodate a splint on the middle joint. Then they said the sizing was all wrong and we made it smaller.
Now she can get them on with a bit of effort, but getting them off is really challenging – painful and practically causes a dislocation. I guess we can work with it for a little while and if we can’t make them work, then I guess getting them resized is the next step. I really wish we had just started with the swan neck splints and been done with it. Hindsight is, as they say, twenty twenty. Add to all of that confusion the fact that Dr. Tinkle said they have gone away from the silver splints for kids and opt for the plastic oval 8s… I just don’t know. And as important as the ring splints seemed at one time, now they are just an annoyance compared to the cervical instability.
The other – more important at this point – piece of hardware we got, is the Miami J collar thanks to Dr.T. Andrew put it on her last night when he brought it home. I had hoped, foolishly, that it would instantly relieve some of her symptoms. Needless to say, that did not happen. It was terribly painful for her and she couldn’t stand it for more than a minute or two. He thinks her muscles are spasming when put in such an unfamiliar position and I suspect he is right.
It appears to fit reasonably well but it rubs/pushes a spot on her spine and the base of her neck and it pushes on the base of her skull which exacerbates the terrible headache. It also makes her incredibly dizzy when she wears it. So, the hope of instant relief was fleeting in the face of reality. We are going to work with her and see if we can’t get her to a point of tolerating it. It isn’t that she was vehemently opposed to wearing it and is just being oppositional or anything. She wasn’t thrilled with the idea of wearing it in front of her friends but I think she had come to a point of being willing to wear it if it would make her feel better. She willingly sat down to put it on last night and give it a try, so I have to believe it is just painful for her to be moved into the ‘correct’ position. Afterwards she tried to tell us her neck was just made like that and we shouldn’t attempt to change it with the collar. Again, she rarely cries but she shed some tears during the short time she wore the collar. I just wish something would go easy for her, just once!
We also got a copy of Dr. T’s report that he sent to the pediatrician. So, we have the diagnosis in black and white. I was going to wait a week or so then call to see if Dr. Black had received the report and request a copy. Don’t have to now. Dr. T is now one of my favorite people on the planet!
I guess Emily is paying for her 2 hours of visiting yesterday. Either that or she is continuing to go downhill. More headache. More dizziness. More exhaustion, weakness and lightheadedness.
I couldn’t get her woke up until 2:30 today. And she went straight from her bed to my bed to rest. She drank a little cherry limeade but is too nauseated and tired for anything else. She said maybe if she slept a bit more she would be hungry when she woke up. So, all I can do is let her sleep and hope she wakes up feeling better in a while. I tried to take her pulse before she got up. It was really fast so I went and got my phone so I could time it. When I settled down to take it, it went from really fast to very slow in a few seconds. It also seemed odd – like there was a background beat or extra beat or something. I can’t quite describe it. I am no expert at taking a pulse but it doesn’t seem quite right.
Truly, it *feels* like an emergency but I guess no one else views it the same way. For now, all I can do is wait for the MRI and the results. But I get closer everyday to just taking her to the ER – if I see a hint of more serious symptoms we will go. The only thing that holds me back is that the ER is clueless on how to deal with any of this. At best, we would get a sympathetic, compassionate dr who is willing to listen but unable to help. At worst, we could get the moron who refused to order an MRI for her back even though the pediatrician had sent us to get one. The wrong person working on my kid could do serious damage. This is in the terrifying, heart-stopping, gut wrenching territory. If I am right about what is going on with her, then it is quite certain that damage is being done to her brainstem/ central nervous system with every moment that passes. Why am I the only one who sees this? I know that Chiari and the related issues, like EDS, can take years to be diagnosed. At the moment, I cannot fathom waiting that long for answers. 5 minutes seems too long to wait.
This is one of those days that I am at the end of my rope. Just trying to hold on…
Regarding Ring Splints: Got a call from OT – we have an appointment to see Gwen next Tuesday about the ring splints. They said something about resizing or refitting… I can only assume it means they have come in and Tuesday will be the fitting. Surely we don’t need more sizing to order the darn things. Funny how this is so much less important to me today than it was a week ago…
Today we are waiting to see about the state of the ring splints which are being ordered for Em. Shouldn’t be difficult but, for some reason, everything is. Our insurance agreed to pay for them – at least the 3 our OT requested. Em actually needs a splint for all 3 joints on every finger – so that would be 30 splints. At around $100 a piece, it would be lovely for insurance to pay for them!
So, even though insurance has agreed to pay for them – they won’t let OT order them. I guess maybe this is a special thing and was approved since my husband is an employee. Anyway, they are being ordered through purchasing and there seems to be a snag. I will refrain going into details, particularly since I don’t really know all the details but there is no reason for the delay in my opinion.
This is just another example of how something simple ends up being ridiculously complicated. We have been waiting since June to get to the point of ordering ring splints. I read about them in my research early on and knew they were exactly what Emily needed. She cannot cut her own food, play guitar, type or write without dislocating her fingers. This is about a 12 year old being able to function.
Even though I knew we needed the ring splints in June, we had to get to a pediatric rheumatologist – that was a long journey and a fight with insurance. We had an appointment at Cincinnati Children’s that had to be cancelled, then we were able to go to Riley Children’s August 29. Then, when they couldn’t help us, we got to go to Cincinnati to Dr Ting. Got referrals to PT and OT. Have been going to OT since September and only now are starting the process of ordering ring splints. It is incredibly frustrating because every moment that passes, my child gets weaker and struggles more. I was hoping to already have the ring splints on her hands by this time but there are so many hoops to jump through.
I hope the splints are worth the wait, but I also know they will be just the very minimum of what she needs. They are not going to solve her problems – additional splints need to be ordered and who knows how much time that will take!