Wow! What a crazy past week it has been for us. In an effort to make sure that we are doing everything possible for Atticus, I made an appointment for him to see Dr. Gresham Richter at Arkansas Children’s Hospital’s Vascular Anomalies Center for Excellence. We have been very happy with Atticus’s current doctors at Wake Forest and we feel that he has made amazing progress under their care, but because Lymphatic/Venous Malformation is so complex and rare I always felt that at some point Atticus would need to be seen by a doctor who specializes in LM.
We have been hearing about Dr. Richter ever since Atticus was born in St. Louis. We were so excited to finally meet him and for him to meet Atticus. He had heard of Atticus before, but we were excited for him to actually see Atticus.
We drove 1,520 miles round-trip, stopping over in Nashville on our way out and our way back home. Every single mile was worth it. We spent about three hours at the Vascular Anomalies Center on Monday, July 14th, meeting with Dr. Richter, his resident, and nurses. Right away, Dr. Richter said that Atticus needs more than just interstitial laser. He started telling us about multiple treatment options, which made me so relieved because I didn’t realize that there were still so many options.
For the first time since Atticus was born, a doctor spoke to us confidently about the treatment of LM and gave us hope that the procedures would work. It is so nice to finally have answers and a positive outlook regarding the treatments.
The treatments that Atticus will have will occur mostly over the next two years. For the next two years, the treatments will be aggressive and we will need to travel to Little Rock probably every two or three months. After two years, treatments will become more spaced out.
Atticus’s first surgery in Little Rock is scheduled for September 2, 2014. He will have his tonsils and adenoids removed, as these are making the malformation worse. Dr. Richter will also extract Atticus’s front bottom teeth, as they have become damage by the pressure of the tongue, and are making the malformation worse. Atticus will also have laser treatment on his lip, and will also receive two different types of injections into his tongue.
The first type of injection is called doxycycline, which is an antibiotic. Atticus’s LM is microcystic (versus macrocystic), so a very small needle is used to inject the medicine into the microcysts. The second type of injection is called bleomycin, which has been used to treat many conditions. At very high doses, it can lead to lung damage, but the dosage that Atticus will get is very small. The point of doing two different types of injections is to see which one shrinks the tongue more. Doxycycline seems to be the safer drug, so if the results are similar, I think that would be the choice for future injections.
Future treatments will include additional laser treatments, more injections, another lip reduction, and another tongue reduction where he will take out tissue from the middle of the tongue.
Dr. Richter also feels confident that Atticus’s trach can come out a lot sooner than we were thinking. This is really exciting to us after being a trach family for almost two years now.
So this is the beginning of Atticus’s new journey. We are very excited to get things started. We know the next two years are not going to be easy, but in the end, it will all be worth it.