missjo Posted November 8, 2011 Report Posted November 8, 2011 Praying for Danny. I'm following his progress. My son is 16 has had one HD IVIG but PEX may be in our future. Please tell your son his experience this week will help others. Bless you both. Melissa
dcmom Posted November 8, 2011 Report Posted November 8, 2011 I am sorry Melanie- in the neck must be SO hard. I really don't know why they do that. I guess just do your best to keep him distracted, take advantage of any family life programs the hospital has to offer. You will be exhausted, hang in there, hopefully this will give him some real relief!
hawks Posted November 8, 2011 Report Posted November 8, 2011 I am praying for you too - hoping that relief is in sight for Danny.
Dedee Posted November 8, 2011 Report Posted November 8, 2011 Please keep us posted. You are in our hearts and our thoughts every day. I just know this is going to be a blessing for Danny. Take care of yourself also. Dedee
melanie Posted November 8, 2011 Author Report Posted November 8, 2011 Ok he's hooked up. He's doing fine. Tired but ok. I'm at NYU I'll keep posting. He's having 5 treatments. I'll let everyone know how it goes. Thanks for being here for me. No one really understands this except you guys Melanie
dcmom Posted November 8, 2011 Report Posted November 8, 2011 Melanie- Both of my daughters had pex. One, we saw results immediately, in the hospital. The other took a little longer, and needed a little therapy to break some fears/ behaviors. BUT- the therapy was super easy. It was like post pex, the ocd was no longer there, but she was afraid of feeling that intense fear again, so she continued with her rituals (avoidance). Once the therapist had her talk about and try the things she was avoiding, she was fine. Hang in there!!!!
melanie Posted November 8, 2011 Author Report Posted November 8, 2011 Thanks. You have no idea how those words make me feel. I am so grateful for your time and senserity Melanie
melanie Posted November 9, 2011 Author Report Posted November 9, 2011 2 down 3more to go. Went well he is hanging around getting bored but hopefully well be done Saturday and we can go home. ,!
peglem Posted November 9, 2011 Report Posted November 9, 2011 2 down 3more to go. Went well he is hanging around getting bored but hopefully well be done Saturday and we can go home. ,! Thanks for keeping us posted. So glad things are going well!
peglem Posted November 9, 2011 Report Posted November 9, 2011 (edited) Peg. Are you still doing ivig? Yes, every 3-4 weeks. Have you guys quit IVIG, or will that continue post PEX? Edited November 9, 2011 by peglem
kimballot Posted November 9, 2011 Report Posted November 9, 2011 Melanie - thanks for keeping us posted. I hope the rest of the treatments go well. Prayers for a peaceful night for both of you.
melanie Posted November 9, 2011 Author Report Posted November 9, 2011 Peg Had an iv scheduled for Friday. Still doing tem until this. Dr said he will probably continue ivig. Have to see I guess how this goes. Melanie
melanie Posted November 10, 2011 Author Report Posted November 10, 2011 Rough day. He's so off. Angry etc. Ughhh Melanie
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now