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Dr. Mattke and Dr. Krych will answer questions live during the broadcast. Post your questions below before and during the broadcast. Sign up for event notifications.
Join us tomorrow at 10 am CT for an #AsktheMayoMom Facebook Live session about hypoplastic left heart syndrome (HLHS) with Dr. Angela Mattke, pediatrician, and Dr. Timothy Nelson, pediatric cardiologist and director of the Todd and Karen Wanek Family Program for HLHS.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Contact the program at HLHS@mayo.edu.
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Dr. Mattke and Dr. Nelson answer questions live during the broadcast. Stay up-to-date with the latest information about HLHS by reading the HLHS Cause to Cure blog.
Dr. Angela Mattke and Dr. Rodrigo Ruano discuss maternal fetal medicine surgery during an #AsktheMayoMom Facebook Live session on January 5.
A while ago, you had a question about your son who has SCN1A mutation with GEFMS+ and would someone with intractable epilepsy be a good candidate for surgery.
We brought your question to #AsktheMayoMom about Pediatric Epilepsy Surgery, a video discussion with Dr. Angela Mattke and Dr. Nick Wetjen from Mayo Clinic.
Here is their video response:
Jen, how is your son doing?
We're hosting another #AskTheMayoMom about pediatric epilepsy on Dec 15 at 10am CT. During this video Q&A Dr. Angela Mattke and guest Dr. Nick Wetjen, pediatric neurologist, will talk about pediatric epilepsy. You can participate by asking questions; Click View & Reply to see the details.
You do not need a Facebook account to be able to watch the broadcast. You can watch it right here on this page on Connect.
Please post your questions before the event, so we can give them to Drs Mattke and Wetjen beforehand. You can also ask questions during the broadcast.
Hi @ketomom! I'm so glad you joined us in the new group. I remember you from your participation in our webinar/video Q&A sessions with Mayo experts. Did you see that we have another #AsktheMayoMom session coming up on Dec 15 at 10am CT? This time it is about Pediatric Epilepsy Surgery. See info here: http://mayocl.in/2hd4uEg
Would you mind starting a new discussion in the group specific to dietary intervention? It would be great to learn from your and Christina's experience with diet and epilepsy management, as well as to hear what other members have tried - what has worked and what hasn't.
I suggest starting a new discussion so that the diet conversation doesn't get lost in the introductions thread. Here's how to start a new discussion:
1. Go to the Epilepsy group homepage http://mayocl.in/2gJltuq
2. Click the gray button that says START A DISCUSSION.
3. Write a title and message with your question.
4. Click CREATE DISCUSSION.
Thanks in advance.
Dr. Mattke and Dr. Wetjen answer questions posted before and during the event
Hello @hermsenk, I'm sorry to hear that things have been tough with your son. Hang in there! I've moved your question over to the "Post a Question" section for the upcoming webinar. https://connect.mayoclinic.org/discussion/askthemayomom-about-pediatric-epilepsy/
If you'd like to Connect with people who are also dealing with epilepsy, I encourage you to participate in the Brain & Nervous System group discussions on Connect too: https://connect.mayoclinic.org/group/brain-and-nerve-diseases/ It's nice to know you are not alone.
On Thursday, Nov. 17, at 1:30 p.m. CST, tune in to Facebook Live. Angela Mattke, M.D., Pediatric and Adolescent Medicine, and Elaine Wirrell, M.D., Neurology will host an #AsktheMayoMom session about pediatric epilepsy.
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Dr. Mattke and Dr. Wirrell answer questions.
Hi, @sascha2432. Thank you for participating in our #AsktheMayoMom broadcast! We're sorry we didn't get time to answer your question live. Here's a response from Dr. Dearani: This is a well-documented late problem following the Fontan procedure. A knowledgeable cardiologist should be involved with medical management and gathering imaging and other medical testing to determine whether there is a role for a cath lab intervention, or surgery, or transplantation in some instances.
Hi, @goodgrief16. Thank you for participating in our #AsktheMayoMom broadcast! Here's a response from Dr. Dearani you may find helpful: A newborn with heart enlargement to this degree can be quite challenging to manage after delivery. The decision of whether to operate or not would be determined at that time. The cone procedure is generally reserved beyond the newborn period and preferably between 2-5 years of age. If surgery is required in the first few months of life the operation that gets advised is generally based on the experience of the surgeon and the institution.
Hi, @hannahfgibson. Thank you for asking a question during our #AsktheMayoMom broadcast! We're sorry we didn't have time to answer your question during the broadcast. Here is a response from Dr. Dearani: It appears that your son is going down the treatment algorithm that ultimately results in the Fontan procedure. Anatomy of the criss cross heart is complex but the details of this are less critical if the decision has been made to go down the Fontan pathway. The surgery for the Fontan procedure (most often) is done without interfering with any of the internal anatomy of the heart.
Hola @guadalupe. ¡Bienvenida a Connect! Es muy difícil cuando alguien que queremos recibe un diagnóstico de cardiopatía hipertrófica y además con síndrome de Noona, especialmente cuando su hija es tan pequeña. Hemos movido su mensaje a este grupo en español y aunque todavía no hay miembros con este tipo de experiencia que hablen el idioma, tal vez podría considerar postear su mensaje en este otro grupo en inglés:
y usar un traductor como Google. Pero le agradecemos que nos escriba en español porque ésto nos va a ayudar a que otras personas puedan unirse a esta conversación.
Me da gusto que se ha contactado con @cynaburst de nuestro grupo de Cardiomyopathy, ella habla algo de español y la puede ayudar.
El próximo jueves 20 de octubre a las 4:00 pm (Central) haremos un Facebook en vivo con la Dra. Angela Mattke y el Dr. Joseph Dearani, Cirujano Cardiotorácico y Jefe de Cirugía Cardiaca para una sesión de #AsktheMayoMom sobre enfermedades cardiovasculares congénitas pediátricas. Los doctores van a estar contestando preguntas en vivo.
¿Además de la cirugia, hay alguna otra opción de tratamiento que haya recomendado el equipo médico que atiende a su hija?