MALS surgeon for teen

Posted by celestegillis @celestegillis, Mar 22, 2023

My 15 year old has been diagnosed with MALS. He has lost over 35 pounds since the end of August and is nauseous 24/7. He received a Celiac Plexus Block last month and it stopped his pain but the nausea is getting worse. He also gets very dehydrated and is malnourished because eating hurts and makes him sicker. He spent all last week in LeBonheur hospital getting fluids, a good clean out because he was impacted, and to find a solution to his symptoms. They do not have a specialist to treat MALS. What pediatric vascular surgeons do you recommend from good experiences? Any suggestions on helping his nausea? No medicines are working very well. I am desperate for relief for my son. Thank you.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 23, 2023

@celestegillis -
Welcome to Connect!
I’m sorry to hear how sick your son is- MALS is not that common, especially in children.
Le Bonheur seems to be an excellent children’s hospital. Was your son diagnosed at the hospital? What tests did he have and how did they explain the condition to you?
Did he see the Pediatric GI surgeons there?

celestegillis | @celestegillis | Mar 23, 2023

LeBonheur was great however they did not have anyone that could address his MALS. He was diagnosed elsewhere from a vascular surgeon. He had a vascular ultrasound done that showed the compression. He is currently being tested for POTS. LeBonheur focused on helping his nausea rather than treating the MALS. We now have an appointment with Dr. Timothy Kane at Children's National Medical Center in a few weeks.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 24, 2023

@celestegillis
Dr Kane seems to be an excellent pediatric surgeon with wide experience.
Since MALS is not so common in children he may be able to refer you to a surgeon with great MALS experience.
Hang in there!