Long QT specialist

[Laurie]

Hello again,
I have a child who has inherited long QT from me. My other child may have it as well.  We can't get a doctor to aggressively check my daughter out or treat her.  We live in Michigan and the doctors here are dragging their heels. It is a new form of Long QT that is included with Andersens syndrome- a rare form of Periodic Paralysis.  I suspect Andersens is the reason why they don't really know how to treat her.  Her pediatrician won't support the long QT either untill she is diagnosed by a pediatric cardiologist.  We saw one at U of Mich but he is debating whether or not she even has long QT.  She was diagnosed by my doctor in Rochester NY- but because he isn't a pediatric cardiologist I guess he doesn't count. Where can we go that has a pediatric cardiologist that specializes in Long QT who can help confirm her diagnosis so her treatment plan can be implemented?
Thank you for your time,
Laurie

[Been down that road......]

Dear Candace,
Thank you for writing.  My daughter had one fainting spell when she was two.  When I was in the ER during a paralysis attack - due to Andersens syndrome - it was discovered that I had a long QT interval.  I was told to have my immediate family checked out by each person having an ECG done. My daughters first one showed borderline.  At the time she fainted she was worked up for possible seizure which isn't uncommon.  We didn'tknow about mylong QT at the point.  When I received my diagnosis my children were checked out by long QT specialists in Rochester New York.  That is when they exercised my daughter and found her Long QT.  My daughter saw a Dr. MacDonald **** at U of Mich.  He is a pediatric electrophysiologist. He is suppose to be excellent.    I went to Dr. Lehmann for long QT genetic counseling and he has been absolutely wonderful!  You will really like him. He isn't a pediatric cardiologist but he did form a game plan for my children to be implemented by Dr. ****.  We follow up with Dr. **** in February.  Dr. Lehmann goes the extra mile for you. He spends LOTS of time with you so plan on being there for a while.  He is a long QT expert.  
My son hasn't experienced any cardiac symptoms yet except for describing his heart as being irregular- which it is when I check his pulse. He is , however, showing the neuromuscular signs of the Andersens (in my opinion although it is too soon to tell). We have to keep an eye on him.
Good luck at U of Mich!
Laurie

[candace]

I live in Michigan and may have a daughter with Long QT.  She is going in to see a doctor at U of M Center.  Maybe the same one you saw?  Dr. Lehmann?  My daughter is 14 months old and has experienced loss of consiousness after falls.  She does cry a tiny bit before she passes out. What symptoms have your kids had?

Candace

[David S.]

Hello,

I hope you have been able to see another cardiologist to get some answers to your questions.  I don't want to take anything away from the Clev. clinic, but we see a pediatric cardiologist at the regional heart hospital in Cincinnati, OH. He is very good and thorough. E-mail if you would like any more info.

How old are your children? We have a one-year old with LQT that was diagnosed at 4 days old. She has a pacemaker and takes labatelol and propanolol. She has not had any heart or syncope incidents since being medicated.

Could you explain Andersens syndrome a little more? Is this separate from the LQT or a new strain of LQT?

Look forward to hearing from you.

David Skinner
dskinner_sbqt***@****

[Cleveland Clinic, MD]

Dear Laurie,
Dr. Rick Sterba is a pediatric electrophysiologist here who specializes in long QT syndrome.  I would recommend coming here for a second opinion. You can make an appointment with him by calling 1-800-CCF-CARE.