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

I personally haven't heard anything about Imuran, but I do know that it does take time for the thymectomy to take effect. I was told by my neuro and GP to expect anywhere from 6 mos-1 year....so hang in there! Tell Dallas to hang in there, too! I was also told that until I was officially "in remission" that there would be good/bad days/weeks, but not to give in to this disease and DO NOT GIVE UP HOPE! I hope someone who actually knows about that drug can give you some good advice. In the meantime, hang in there!

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!

Hey Heidi! I'm so sorry to hear about Dallas! I think about him (and you) all the time and still keep you in my prayers - know that there are a LOT of people praying him. So, his eyes are doing that weird "twirly" thing? That's what made me go into the hospital again for plasmaphoresis and THEN IVIG for a total of 9 treatments.....I loved the IVIG - hated the other - too invasive for me.........It has been rough, but I know that remission is just around the corner for both your precious son and myself - I just keep praying daily .......Are the docs thinking about IV IG for Dallas? Now you will hear from others that have not had good experieces with it, but for me it was a life saver - truly. If the docs sign off off on it, it may be a good thing to explore. Plus, when they do get the PICC line in it will be a breeze to get his labs done. What are the docs saying about him feeling so yucky so soon after the thymectomy? Are they giving you any info? You do have good docs, right? They are key, b/c half the people that I have heard from seem to have crappy docs that aren't nearly aggressive enough, and they suffer needlessly........ whereas my doc gets me into the hospital whenever I start to feel sick, but the medical kills are really starting to pile up........Please know that you and your baby are in my prayers and thoughts daily, and I'm so sorry that you are having to go through this. If/when you do go back let me know where you are so I can send Dallas a little something to keep him occupied in the hospital - what type of stuff does he like? Let me know if you need anything.....Erin

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

Hey there! So they are going to do a vascular cath? Is that the one in his neck? Or is that the chest port? They are thinking about putting a permanent port (my hematologist at least) in my arm - that way they can do my IV IG or plasmaphoresis every 3 weeks (if need be - at least until I'm in remission........ ) I would much rather have a port in my arm any day, but that is simply b/c of my intense fear of needles.....I'm actually thinking about going to a therapist abou that - cuz' it has gotten so bad and EVERYTIME I go to the hospital (which is a lot) I end up being a human pin cushion ............Feeling kind of rough right now, so I'll let you go for now! Take care!
Erin]

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/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