Now that I've had my rant about ABC, I'm trying to get my focus back on what is really important, my family. So here's a little update about how our last set of appointments were.
Friday we saw the GI. Good news is that they want us to try to taper down on the miralax and add in fiber supplements. Yippee! Maybe we can get off of medication at some point this year - that would be GREAT! We talked about how many EDS sufferers have chronic constipation throughout life, and they agreed that we should try to find something more "natural" that she can use forever if needed. While miralax is pretty safe, no one wants to think a 6 year old will take it forever.
I also asked about Aloe Vera gel, as there are several people I've met who swear it is wonderful in helping with constipation. Let me stress here they were not talking about Aloe juice, this is Aloe gel. The GI didn't know much about it, but, he did say that he was ok with us giving it a shot and did not feel it would be harmful in any way. What most people say is that the gel kind of coats things and helps them pass. How true that is I don't know, but again, it just might be worth trying.
Then we got to the tummy problems. Basically they don't know what is going on, and so we are upping our Previcid to twice a day for a few months and then revisit. If we are still having problems at that dose, then they will want to do an endoscopy. While I am happy to have the script and something new we can try, I still want to really look at some of the other suggestions I've been given that are fatigue related. In my heart I still feel that is the root problem. I could be wrong, but sometimes you just have to go with your gut. Now, of course the fatigue could be effecting the valve at the top of her stomach, and then the acid is coming up. If that's the case, the Previcid is still going to help. So I guess it will be trial and error for a bit. Maybe starting with the medication and seeing what does (or doesn't) happen, and then try some other non-medical things at the same time or after.
After our appointment, we had just enough time to get some lunch and head back for our OT appointment with Keith. I cannot say enough how blessed we are to have such a warm, caring, understanding and funny OT! My daughter actually enjoys seeing him, even though she is really sensitive to the warm plastic when we make the rings. He is just so good and interacting with her and making her comfortable - I just wish more medical staff were like that! So, we had three new rings made, and he was able to adjust two for us that were bending a little funny. (like maybe someone stepped on them, LOL)
I did take pictures of the entire process this time. I've always wanted to, but finally got around to it this time. I will post them here to see - I think it's pretty interesting myself. So many people have asked how our rings were made because their OT's don't do them like ours does. They are limited to ordering clear plastic ones for their kids. So maybe they can see our process and get something similar. The cool colors make all the difference in how much my daughter enjoys them and is *proud* of them. I couldn't imagine having to have her just wear clear.
On the way home she slept most of the way. (It's an hour and a half drive). I just shows again how her endurance is so different from others her age. We didn't walk a lot, didn't even stand much, but she was just so worn out after all that. Just like she gets worn out from school.
Oh - just for record keeping, the OT was planning to come Friday, but we weren't going to be there. ;) I'm guessing we're back on track with that now!