UPDATE: Karla’s next treatment in the United States will be arranged by a private donor in October. She will be traveling to Denver for further care.
The following patient’s care is being coordinated by the group, From Houses to Homes (FHTH). If you have any leads or ideas for them, please email them at info@fromhousestohomes.org.
Karla, 7 years old, has a Venous Vascular Malformation. FHTH is in the process of searching for a MD to help her. Previously, she had visited a hospital in Colorado for treatment, and although the treatment shrunk the tumor, it has returned to its current size. If you have any information that can help them locate the appropriate Doctor/Specialists for treatment please either email them at the address above, or leave a comment here.
If you choose to make a donation to help, go to their website (www.fromhousestohomes.org) and click on the PayPal button on the right-hand side of their home page.
I will email the contact person for medical background. Dr. Milton Waner at Roosevelt in NYC is currently treating a Children of the Americas patient for this same malformation. Once I get medical background info on what was done in Colorado, I can call his nurse in NY. She and I have worked closely together this past year.
Jody Greenlee,RN
Hey Jody, I would go for the roosevelt st lukes hospital contact in NY City, of course you need the records, and she will need to have a new series of tests done, which is a cd live film, in Guatemala with a dye, available at tecniscan I believe, if they get a referral from Herman Pedro Hospital in Antigua, or the Pediatric Foundation in Guatemala City it is much cheaper. I had a patient treated at the same clinic at the roosvelt, who was the doctor in colorado…….it is not a tumor I would guess but an oversized artery and veins due to the blood flow and build up, very sever……this is a multi treatment disorder and will need ongoing care for years……….they only do what they can to block up the arteries with coils and special glue, but that creates other area to act up, and the story goes on………no one should operate, this is only treatable through inter ventional radiology
Center for Endovascular Surgery
at ROOSEVELT HOSPITAL
1000 Tenth Avenue, Suite 10G
New York, NY 10019
Tel. 212-636-3400
Fax. 212-636-3296
http://www.vascularcarenyc.com
Around the world, people have begun using Propranolol for treatment of vascular malformations. I have treated several children from Guatemala with this drug without any side effects. One must examine the child thoroughly, for heart or lung disease and ask about wheezing in the family, as the drug should not be used in people with asthma. If her heart and lungs are normal, the usual dose to start is 2 mg/kg/day (usually divided into 2 or 3 doses. This is an old, safe drug if used properly. It has not been looked at in older children, but in infants and toddlers seems to shrink blood vessels and promote apoptosis (cell death) in the vessels of the malformation.
I do not know if this would work in this child, but is certainly worth a try, if medical monitoring is available. You can read more about the use of this drug in the literature. It is not a very expensive drug and can be purchased in most countries. We will be in Guaemala in January, and I would be happy to see her in our clinic then, if you so desire. Carol M. Cottrill, MD, President, Children of the Americas