Edda started mouthing her right hand in November of last year. This was just about the time I was becoming fairly certain that she wasn’t your typically developing kid. I remember so clearly thinking, oh, she’s getting her molars, she’s just chewing on her fingers.. Little did I know..
Argh. I hate the mouthing. Well, maybe hate it is too strong a word, I just really dislike it. It’s just a wee bit disgusting. You know, saliva everywhere, everything a bit smelly and then you think of all the germs (although I have to say that Edda is no sicker than the rest of us).
So for the first half of the year, when we weren’t sure if Edda had Rett, I put her arm in the brace because I was totally paranoid that she was losing her ability to use her hand and if I put the brace on her, she could still use her right hand pretty well. Everyday I would look at that hand and see that she was still picking up stuff and moving things around. So I’d say to myself, see? She doesn’t have Rett, she still can use her hand! Ha! Ha! Ha!
Well, I have to say that now it’s finally September and since January, Edda has lost a lot of the use of her right hand even with the extensive bracing and various rubbing/tickling/scratching sensory crap that we’ve been doing to get her to try and remember that she has a right hand – she still likes best to put it in her mouth.
So now we’ve braced the arm so much that it’s losing muscle tone. I’ve given up thinking that she’s going to give up mouthing anytime soon, so we’ve gone back to where we’ve started. To preserve muscle tone, she gets to go braceless again, but everyone at school and at her therapies is reminding her to keep her hand out of her mouth. She knows she’s not suppose to do it and our PT managed to get NO MOUTHING for a whole 45 minute session.
At school today, I saw her go hide in a corner so she could mouth to her hearts content away from the teacher’s eye. She’s a clever one, that Edda.
Doris, I feel like I could have written this post myself! Our experience with the mouthing and hand use was almost EXACTLY the same. I denied Rett for a long time because Brooke had good hand use. Even after Brooke’s diagnosis she maintained a pretty mean pincer grasp when it came to feeding herself. I can distinctly remember when she lost it and feeling so defeated, like it was somehow my fault for letting that happen. She was past her regression of everything else so I really had hopes that she could maintain it.
We still use Brooke’s arm brace, occassionaly. Usually if we’re trying to get her to do something with her “good” hand or if she’s having a particulary “mouthy” day – like yesterday when she had a cold (it’s always worse when she’s sick). But I would say overall the mouthing has gotten a little better lately. And I still believe we can get her back to some better use of that hand. It’s coming back – just different then before. More of a whole handed grab, if that makes sense.
It sounds like you are all on the right track. I remember reading or hearing once that it was important to keep going through the motions even if everything is hand over hand and you’re doing most of the work. That many times some hand use comes back and it’s usually the things you’ve kept at. So I guess that’s what I’m going with – although I will admit at times I just do things for her myself because, darn it, it’s just easier! But I try – and maybe it will make a difference and maybe it won’t but at least I feel like I’m doing something.
Doris,
My daughter did the intense hand-mouthing when she was little too, shoving her hands into her mouth until its corners tore. :0( We were able to get her to transition over to chewy vinyl toys for about a year, clipping them to her shirt with a pacifier ribbon in case she dropped them. The toys were great, because they helped preserve good hand use for awhile and they let her have something in her mouth other than hands. Eventually her hand pattern switched to patting at her collar bones, which we really (!!!) appreciate.
I wish you the best…some of these Rett quirks are really frustrating.
Rose-Marie,
mom to Angela, age 10,
Maple Valley, WA USA