I am happy to share Jozie’s story. I made a facebook page for my daughter its www.facebook.com/joziepalmer that has a time line of her events and such. She was screened by Dr. Collaco in 2008 when she was 8 mos old. Their father wasn’t genetically proven to have HHT at that time it was clinically diagnosed. So they did a bubble echo that was negative and he listened to her brain through her soft spot bc CT scan and MRI were expensive and not covered. He said she was clear and rescan her when she’s 12. Almost 3 years later we had a son at 30 weeks gestation he has severe hearing loss and UVA did genetic testing. I asked about HHT testing and they added it, of corse their father came back positive so it made our children eligible for testing free. Our son was negative and Jozie was positive Sept 2013. We had her screened at UVA as well, they are not an HHT clinic (I’m working hard on changing that). Her bubble echo was positive and CT showed an AVM on her brain we met Dr. Liu and I can’t say enough good things about him! She had an angiogram Dec 13, 2013. She had resection brain surgery to remove that AVM on Jan 13th, 2014 one month after finding it. She also had an aneurysm w/ the AVM. She has fully recovered and her brain is clear, thank God. I’m not being foolish I know one can develop, I’m just very hopeful. However when the neurosurgeon at UVA told me we needed to take Jozie to Hopkins I was very hesitant. I am very picky about my childrens care. UVA wasn’t willing to coil her PAVM’s bc they weren’t causing issues. I felt like I had no choice but to have her treated there. So we went in September and they coiled her PAVM’s Oct 29th. She vomits violently w/ anesthesia I told them repeatedly about that. When I got to her they had given her half a cup of juice and no extra nausea meds. She immediately started vomiting and bleeding out from the incision site in her groin. They got her meds and stopped the vomiting quickly but made her recovery 90 min longer. Sorry this was so lengthy and lots of info you probably didn’t need. She lives with a hereditary disease called HHT also known as Osler Weber Rendu Disease.
@Renee Welcome to the group so glad you found it.
Please feel free to vent, complain or ask anything here. Its a great support group. I am so sorry for your daughter and your family going through all of this and she is so young,
Great idea to have a face book page to educate people and share your journey.
Welcome. It sounds like you all have been through so much and do appreciate you sharing Jozie’s story. I hope she is keeping well now. It is very inspirational to hear positive outcomes.