son started on Imuran
 

Hey all! Just thought I would drop in and tell you that my son was doing really well after his thymectomy...but I think things are starting to go downhill again for him. His eyes are very tired again, and today he starting complaining of weak arms and legs and he had his "sad" look about him again. The docs just started him on Imuran 2 days ago...what do you all think about it? They say for kids, it is much better than the long-term side effects of the Prednisone.
Thanks for helping, Heidi:confused:

Onset of action for Imuran is reported to be at least 6 months, so be patient…
Maurice.

Thanks for encouragement and info. Dallas is having a bad day (weekend actually). Muscles very tired and cramping...eyes doing their funny thing they like to do and problems swallowing...so doc is calling his neuro team in birmingham again...probably going back. :( will let you know...thanks again... Heidi

p.s. erin, are you feeling better yet? I know you have been going through a rough time, and I have just been thinking a lot about you. I hope you are on your way to feeling better! :hug:

Thinking of you and Dallas
 

:wink:Yes, indeed we are back in the hospital...Dallas is waiting to go back to surgery to have is vas. cath put back in...now neuro realizing they shouldn't have pulled it 2 weeks ago. Probably gonna leave it this time, so no more surgeries...anyway he did so great on plasmapheresis last time, they hate not to try again. They said they do it first and if doesn't feel any better they do IVIG. So we will see. We will be here for the next 2 weeks anyway...we do have great docs....he has a whole team of neurologists up here in alabama....they are wonderful to him and they treat about 5 other kids with myasthenia, so that makes me feel more confident. They have had 2 of them go into remission after their thymectomies so far. The docs say, between the thymectomy and school starting he just tuckered out a little quicker than he normally would have after plasmapheresis. So we hope this "tune up" will do him good and boost start him for a good while! Yeah...his eyes go in a weird way... then he starts with the throat trouble...so his doctor down home, doesn't let it get any worse, he sends him the minute I tell him these things are going on...don't want to take a chance of things going bad and having to do more invasive things. So anyway...Dallas is a true boy...loves just anything boyish!! However, sharks are his favorite...he loves to read about them, watch them, and playing with figures of them!!! HOnestly though, you don't need to get him anything. He brought some coloring books and a couple of star wars guys. They keep him pretty busy here with activities when he is feeling good....so thanks a million for thinking of him. We hope all is going well with you and will continue to do so...you are in our thoughts and prayers also...Heidi

Yes, indeed they put another vas cath in. This one is going to stay this time. the surgeons were not real happy that neuro had pulled it before we left last time. So this time it stays, at least for a few months to make sure he isn't gonna need it. He had something a little different this time. When he came outta surgery for the vas cath, the renal docs wanted to immediately begin his pheresis, so they left him intubated and sent him straight to PICU to do his first pheresis. Dallas was not happy at all waking up with that tube in. It took about 3 hours and then they pulled the tube. He was one honked off little man! He even attempted to pull the tube out himself. I don't blame him. Anyway, he has had 2 treatments now and has 3 more this week. Already feeling a lot stronger than before! Pheresis just does such great things for him. I wish you had the same results. He feels like conquering the world when it is all over! Anyway, 5 more days here and hopefully we will go home after that. The docs are sure that his thyroid was the culprit for his exacerbation this time. We didn't realize, but when he was being pheresed before it was completely wiping his synthroid (thyroid pill) out of his body. So by the time we got home, he had not thyroid left and went completely hypothyroid and that caused an exacerbation of his myasthenia. How crazy, so now he receives a massive thyroid dose and we wait until after he is pheresed in the day to give it to him. Oh well, you live and learn. What's important is we now know and he is feeling better. Talk to you soon...Heidi

[COLOR="Indigo"]THat tube is SCARY!!!!!!! I was scared out of my mind when I woke up with that suucker in me and fighting it - they just kept telling me to relax - yeah right!:) That was not going to happen! Then they made Mike leave the room to remove it and told him to stay out for 5 min so I thought "Well, this is it!" depressing......I like your little boys moxie! He sounds great! I'd be ticked off too! LOL[ What a little trooper! Thank goodness they are keeping the cath in this time - that is the hardest part.......I talk about your little boy all the time to my family and wonder how he is, so I was thrilled when I saw your post! Take care! Erin:D/COLOR]

Hey Heidi! How's Dallas doing? I hope he's doing great! Just thought I'd drop you a line and see how everyone is.......
Take care,
Erin