I am finally getting the chance to sit down and debrief with you about our weekend in Newport. Every year there’s a Vascular Birthmark Conference and we had the opportunity to attend this year. They bring in doctors from around the country who specialize in vascular anomalies. We had been eager to go because we knew Leo’s neurologist, Dr. Comi was going to be present and speaking specifically on Sturge-Weber Syndrome. We have a virtual relationship with Dr. Comi and send her all of Leo’s medical records and updates. So to meet her in person was a big deal for us, and especially Leo. I wanted her to hold him and just tell me he’s ok and we are on the right track.
We didn’t really know what to expect but knew it was going to be a very informative conference, and we were going to have the opportunity to meet amazing specialists and more families within the port wine stain and Sturge-Weber Syndrome community.
The night before the conference we were in bed and I started to cry. I was starting to feel sad about everything; sad we even had to go to something like this for our sweet boy. Don’t get me wrong, I was SO grateful to go and have the means to go, but I just got emotional. Knowing I was going to meet other moms who I have “met” online and possibly meet their sweet littles, made me a little anxious. My husband comforted me and we prayed together.
Another blessing was the company and support we had from our family as we made our way to Southern California. My dad, father-in-law and my husband’s uncle (he’s a retired oral surgeon) were able to join us for the conference. They too, wanted to learn more about Sturge-Weber Syndrome. Once we got to the conference we had some time to mingle with other families and meet some amazing warriors. Being there almost made me proud of the community we have been brought into! I knew a gal whose daughter also has a port wine stain and Sturge-Weber Syndrome; we have a relationship online and finally got to meet in person. We all sat together and that’s when we got to meet Dr. Comi. I gave her one huge hug and probably made her uncomfortable; haha but I couldn’t help it!
Dr. Comi was the first speaker and I was all ears; she was an amazing speaker. I included some of her slides at the bottom of my post, but in summary she talked about how early diagnosis is key (she advises an MRI with/without contrast around three months of age), and that pre symptomatic treatment is important. Social impairments are common and more discoveries are on the horizon. Honestly we knew a lot about what she spoke about because we have done so much research ourselves and have been talking with Dr. Comi throughout Leo’s life. What comforted me was we are on the right track with Leo and are doing the VERY best for him.
After hearing Dr. Comi’s presentation we went to another room for a talk on psychosocial issues in families affected by a vascular birthmark. We thought this presentation was so important for all to attend. We had heard a lot on the science part and where we are at with medications, treatment and all the new research but this was the emotional side, to me, the heart of this disease. I also included some of the speaker’s slides down below on what was shared. But to give you an idea the speaker, who is a child’s life specialist, talked about the social aspect of living with a vascular birthmark and how it can add stress and impacts your sense of identity. She spoke about how the parents are affected and how we can feel isolated, overwhelmed, have anxiety and even fear. Let me just say, as a mommy, I was able to resonate with all the above. As I was sitting during this presentation I cried just thinking about my sweet boy and all he has gone through and all the future could possibly hold. I looked around the room and saw so many beautiful faces of others who are walking the same walk as my son. My heart just went out to everyone. My heart ached but also rejoiced with how supportive the community was.
After hearing all the speakers we were given a clinical time. This was the time where the kids/adults get to meet in person with the specialists. We signed up to meet with Dr. Comi. Thankfully we had a lot of time with Dr. Comi before and during the conference but now she was going to be able to hold him, assess him and let us know how we move forward. This was what I had been waiting for. I was anxious and excited for Dr. Comi to hold Leo and let us know things are going as well as they could. She did a few simple tests with him to make sure Leo was focusing, using both of his hands to hold things and pulling himself up. He did great and Dr. Comi was pleased with where we are with Leo. She has advised us to do one more MRI within the next few months with and without contrast so we can see the FULL extent of his brain involvement. Our prayer is that it is the same and obviously not worse. There really isn’t a chance that it would be any less. Dr. Comi will review Leo’s MRI slides and if everything looks the same then we continue with what we are doing. We will increase Leo’s medication as he gets bigger, but there will be no need for further MRI’s or EEG’s unless abnormal activity is seen. He’ll be on the medication till he is about five years old and then we would reevaluate from there. However, if it’s worse than we would most likely up his medication and talk to Dr. Comi about what she would recommend. Leo will still be monitored no matter what the MRI shows and we’ll continue to see a local pediatric neurologist to make sure Leo is meeting all of his milestones.
Needless to say it was a long day for all of us but we were so happy we were able to attend and meet with so many amazing specialists and families who are walking a similar path. The conference was also allowing 10 kids/adults to have a free laser treatment by Dr. Nelson who specializes in port wine stain and vascular birthmarks. In fact when Leo was born my husband was doing research on dermatologists and Dr. Nelson came up as one of the best so he reached out to him immediately. We were willing to fly to Irvine for treatments, if needed. Thankfully, Dr. Nelson graciously responded and told us that his colleague, Dr. Kilmer also specializes in port wine stain and she was local! What a praise that was. Most of you who follow along with us know how amazing Dr. Kilmer and her staff are at the Skin and Laser Surgery Center. Anyway, we found out that Leo was one of those 10 to receive a free treatment. What a blessing! We brought Leo in and had the opportunity to talk with Dr. Nelson about Leo. He was impressed with the clearance so far and told us to keep it up until we hit a plateau. We told him we wanted to do a few more with Dr. Kilmer then we were going to take a break until he gets older. Dr. Nelson seemed to agree but also shared with us the younger they are the better it is to treat. He also encouraged us that hopefully within the next few years there will be more advancement and port wine stain will be more treatable. Here’s hoping! Dr. Nelson, like Dr. Kilmer, does not do laser treatment under anesthesia for babies until they are over two years old. So they did the full treatment with Leo fully awake. We waited in the waiting room while they took him back and thankfully it was fast. Leo was ready for his bottle and mama. Dr. Nelson was great and very confident in his work. I loved that about him.
Now that we are home we will see Dr. Kilmer a few more times and see how Leo responds. We most likely will take a break from treatment for a while but are very aware we will have to do “maintenance” treatments later in his life. In total he has had 23 laser treatments! I’d say that’s probably the most I have heard about with a child who just turned one! As far as Leo’s affected eye, we are going to have to put him under soon so his ophthalmologist can get a good look at his eye pressure. We are assuming he’ll have to have a tube placed in his eye to help relieve the pressure. We will know more about this within the month.
Well that’s where we are and prayerfully we ask God to keep Leo strong. If you have any questions, please feel free to ask. Be sure to check out all the photos at the bottom of this post!