Saturday, January 10, 2009

Just a Quick Note . . .

. . . to say that we are going back to All Children's this week. I have photos in hand (or on a flash drive) to give to the doctors - just to show them what happened with the prednisone. It worked . . . for about 3 weeks. Then, the rashes came back - yup, they're back! He has spots on his back and torso (which fade, but become red when he gets warm), a rash on his lower back, spots of rash on his legs and arms, a huge spot on his foot with others popping up there as well, and spots of rashes on his arms. It's so frustrating that this keeps happening to him. He itches quite a bit (and he still does that cute little thing with his tongue when he scratches . . . he sticks out his tongue when he scratches). I have been keeping shoes off his feet unless he goes outside (when he wears his Cars shoes) and oddly enough, that has helped. No socks no shoes in the house, just bare feet . . . or Cars shoes . . . or the Big Red Car slippers . . . of the Elmo slippers . . . or the Cars slippers (as for all the bedroom slippers . . . it's a loooong story). =0) Actually, it sort-of goes back to the time where we had to bandage his feet - we had to make sure the slippers dried before we put the slippers back on him and the slippers are still big enough for him to wear since we had to get them big enough to fit over the bandages. =0)

Anyway, our appointment is on Tuesday. Isaiah's hands are peeling a little, so at least they can see how the elocon has been helping - it helped more during the first 3 weeks of prednisone than it's helping now. =0( Poor guy - he itches a lot. His rashes are nowhere near the way they were last year, and definitely not as bad as they could be, but they are still there.

On the bright side though, he is potty-training himself! Leave it up to my little guy to learn on his own terms and schedule!!! =0) He wouldn't go potty when I would ask him, so I just dropped it. I figured that he just wasn't ready to potty train. On Tuesday night, he decided that he wanted to be a big boy and told me he needed to go potty - without prompting or anything! He wasn't even watching a potty video! He has only had 2 or 3 accidents since then!!! =0) I just hope it continues. The last time he did this, he started getting the rash last year and that was the end of potty training.

Anyway, I just think it's so neat that potty training finally made sense to him. He is so independent like that - he won't do something unless he wants to and is totally ready. I know his therapists think that they are teaching him, but I think he's teaching them! =0) Just kidding, but he definitely only wants to do things on his own schedule. Unless he learns/teaches himself to do something, it just doesn't click. He's so smart!

Of course, he's not completely independent . . . Mommy has to sit in the bathroom with him until he's done otherwise he won't go! =0) It must be the potty dance or something (yes, I do a little dance for him when he goes potty . . . the things we do for our kids, right?). =0)

Sorry about the potty talk . . . I'm an excited mommy! =0)

Back to All Children's . . . please keep us in your prayers as we go back. We still have to make an appointment with the GI specialist, which is another long trip - there aren't any around us. I just figured I would talk to these guys before we made that appointment. I am also going to bring up having Isaiah's meds compounded (made without preservatives). With all of Isaiah's sensitivities, I wouldn't be surprised if the preservatives in the meds were causing some of these rashes. He can't handle them in the soaps or lotions he uses, so why should we expect his body to like them taken internally? Anyway, there's a lot to discuss while we are there - I just hope my brain remembers everything! =0)

I will write an update soon (maybe Tuesday/Wednesday . . . since the appointment is on Tuesday) with information from our trip . . . I have some great "Not Me's" for this Monday . . . it might be a bit late, though. =0)

2 comments:

Carla said...

Hey, We get periactin and atarax compounded and it has made a HUGE difference. I noticed that when I use a non compounded antihistamine (including benadryl) it does not work nearly as well as me giving the compounded ones. So I stopped giving benadryl for reactions most of the time, and just give extra atarax. The only time I still do benadryl is if he is starting a reaction first thing in the morning and he hasnt had his morning doses yet. This happened this morning, so I gave his morning doses of the compounded meds with a dose of benadryl, and he was great within 30 minutes.

The periactin and atarax are compounded without artificial preservatives, dyes, and flavors and there is no alcohol or any trigger in it. They cannot compound singulair. They cannot compound zantac. Prevacid doesnt work well when it is compounded. The shelf life is only 10 days, and it loses its time release effect which hurt Gavin badly. I didnt check into compounding reglan. He gets such a small amount.

However, I do notice that if the anthistamines are compounded, the other meds' inactive ingredients dont seem to be an issue. It is almost as if the antihistamines work so much better without the triggers, that they become less reactive.

Anyway--hope this helps.

stitching under oaks said...

maybe you could post a clip of that potty dance? huh?! just kidding! Glad to hear Isaiah's doing well with the potty training!