Hello just an update on Rocco! He was unable to have an excision of his avm due to the fact Of it being too diffuse. He had embo with doxy and yag laser. We have to go back in 3 months to see how treatment is working. Dr. Richter is the best and his knowledge of cm-avm is amazing. We learned more in out 2 days there than we did in a year in Philly. I would recommend him to anyone and feel we are in the best hands possible! Thanks for all the support! Love to all!
Glad to hear Rocco has a great Doc and that you learned a lot. Looking forward to reading about his update in 3 months. Let's hope it's excellent news for him. I love Rocco's pic.
I am glad you feel good about Arkansas, but sorry excision was not possible. I hope the doxy and laser have a good effect, Amy. Treating a diffuse avm may be more of a marathon than a sprint. My best advice is to hold fast to each day of "normalcy" and enjoy the heck out of it. Hopefully, we will have additional advances in treatments soon.
I know this isn’t the best outcome but we now have a plan. The past year has been so overwhelming with top dr.s telling us only a hemangioma and had no clue of condition. Dr. Richter took a blood sample and he is doing tons of work with cm-avm kids. He feels that doxy works well with these kids. Fingers crossed it does take. He also mentioned that he found that there is a certain protein that is found in high levels with this condition. These high levels are believed to fuel the avm’s and that is why this condition often sees rapid and multiple growth. I pray he finds answers and meds that can break this protein down. I will keep you all informed. I believe also in my heart that the past 2 surgeries actually caused a significant amount of damage. I have been crying ever since thinking I may have hurt this entire situation. In god’s hands now and hope we can find a solution. Thanks again
Amy, we parents have all had that terrible guilt moment. I watched my son's avm slowly develop for years on his face; it looked so harmless. How could we know, any of us? We do the best we can. Please do not blame yourself. You are doing a great job advocating for Rocco.
Thanks dancermom! I now want to shout from the rooftops about my experience and hope I can help and guide others who are in the same situation… Exactly what you do!!! You insight and knowledge is vast and immeasurable. Know your personal attention and support helped my son so much! I wish I could hug you!
Thanks Sharon. I hope you have great news at the end if the summer! Fingers crossed! So blessed to find such love and support!
Thanks, Amy, I will consider myself hugged. :) Maybe we will meet up in Arkansas someday.