My son is 15 months old he has moyamoya he had surgery by Dr Scott in Feb2007.  He has now developed ascites in his belly due to cirrhosis.   Has anyone else experienced this symptom.    
Amanda

Dear Amanda,

Please read my post titled Fibromellar Hepatocellular Carcinoma.  My daughter was diagnosed with this rare form of Liver Cancer on 12/24/07.  This type of cancer is rare, but particularly rare in children, and this form of cancer is associated with people who have Cirrrhosis of the liver.  Fortunately, the best treatment of this type of cancer is removal of the tumor, and we went for her follow visit 1/16/08, and they completely removed the tumor and her CT can showed no other tumors.  They are considering her cured of the cancer and will she  have CT scans every three months for the next two years  and be closely monitored by her Pediatric Oncologist.  No future promises that other tumors won't develop but we were grateful for good news of the day. My daughter was diagnosed with Moyamoya 12/24/05, and suffered a major stroke a week later, she had  her surgeries in the early part of 2006.  Her doctors researched but were unable to substantiate any connection to the  Moyamoya and her present condition.  I would be very interested in what Dr. Scott has to say about his issue, and would be willing to share information about her condition with him. My daughter also has Livedo Reticularis and I am also wondering if there is any connection to this condition.   I will pray for your little guy and your family.  Please keep me posted.

Thank you for your reply.  I email this information to Tyler's Liver specialist.   What hospital is your daughter treating at???   I hope she is doing well.   It is so much for the kids to go through
Amanda

Hi Amanda,

My daughter is being treated at Penn State Milton Hershey Children's Hospital in Hershey, PA.  What hospital is your son being treated at ? Maybe we could have their doctors get in contact with each other and compare notes. We signed a release so her tumor can be analyzed by other specialists. Fortunately, my daughter enjoyed thirteen years of perfect health and is doing very well. We are all confident that she is cancer free and will remain that way.  I couldn't imagine what it must feel like to have your baby go through so much, my heart breaks for you and your family.  God Bless, and please keep in contact.

Wow, This is unbelievable my son was at Hershey the first 2 times he was in the hospital.   He was their for 2 1/2 week until we transfered him to CHOP.   Tyler had Hershey stumped!!!    We are from Schuylkill County, PA .   I did email Tylers liver specialist she said this type of tumor should have been picked up on his CT scan but when we do to see her this Thurs in clinic she will have the blood test done as a percaution.  
Tylers website is www.caringbridge.org under site
tylersincavage.
Mandy

What a small world!  We are from the Lehigh Valley area, but I am originally from Nesquehoning.  Was Hershey stumped by the Moyamoya or the Cirrhosis?  In both cases Hershey was totally on top of their game, and set in motion an action plan.  Please be aware that my daughter had the blood tests done and her AFP levels were not elevated, but the CT scan and MRI both showed the tumor was there, which is why she will continue the routine CT scans. I am going to try and access Tyler's website, but I am not the most technically inclined person. Hopefully, we can get in contact and talk. God Bless!

Hi Amanda,

I hope everything goes well at Tyler's appointment today.  I am sorry I sent the e-mail before I read all of your posts on the Caring Bridge. Some of the questions I asked were answered on his website.  Tyler is an amazing little guy; what strength he has already shown at such a young age.  I will be praying for Tyler and your family.