Pro Long QT Syndrome

SBubba18

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Jun 17, 2006
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I have been just diagnosed with Pro Long QT Syndrome. I have been having periods of passing out for about a month now, and have been to the ER twice for passing out. The weird thing is that I am only 15 and my mom doesn't know why a 15 year old would have this. My family and I are going to WDW in June. I love going on Mission Space, Tower of Terror, and Rock N Roll Roller Coaster. Would I still be able to go on these rides? Also, when I walk around for a period of time, I get really tired easily and my chest starts to hurt. Does anyone know a good place to like sit down and relex in air condition? Thanks for all of your help!!
 
Hi --

I think you should ask your doctor what he/she would recommend re: rides and restrictions.

In June it will be hot -- so thinking about places to take a break is a great idea for everyone! Most folks get more exercise there than anywhere else so you might want to consider using a wheelchair some if you anticipate being fatiqued easily.

My first thought about "natural places" to rest would be restaurants and shows -- a little planning ahead can alternate your experiences and help you rest. Shows at AK include Lion king, tough to be a bug, and the new Nemo. Epcot has canada( they tell you to stand but I have sat when EXHAUSTED and dealing with foot pain), America, China, and France. Many of their attractions are indoors as well -- Soarin', the land, the sea, etc
MGM has little mermaid, the w/c seating at the Stunt show has fans so cooler
(see threads about getting guest assistance cards), the movie ride, Muppets 3d. We spend the least amount of time at MK so will let someone else offer ideas for that park!

I wish you a healthy time and glad you are planning ahead to make sure it is the best time possible. We will be their in June too!

Linda:cool1:
 
First thing is go see a peds cardioligist and get a pacemaker placed. Then after that if the MD will let you ride them this time or make you wait untill the next time.
 
I would second the wheelchair idea, to help you conserve your strength for the fun stuff. No sense in wasting all your energy just getting from one place to another and standing in queues, now is there? Unfortunately you're too young to rent an ECV (I'm pretty sure all of the rental companies insist on the user being 18 or over) but you could rent a manual wheelchair from on or off property (the FAQ has loads of information about this and other things). Is there anyone in your group who would be willing to push you? Just because you have a wheelchair, doesn't mean you have to use it all the time. A lot of people will use them to get between areas, then park the chair with the strollers and get out to explore.

Whatever you do, have a great time and I hope your health holds out for your trip :goodvibes !
 

Thanks everyone!! I am going to print out everyones responces for my mom to see!!
 
I second the vote to get into see a peds cardiologist ASAP !
In addition, never let yourself get overheated or low on fluids......drink fluids all day long, and make sure to get plenty of salt!
 
It's prolonged QT syndrome. Definitely see a cardiologist. Please do not wait and don't go on rides before you do. I agree with seeing about having a pacemaker inserted. It's not something you want to take a chance with.
 
I also have an 11 year old sister who we just found out today has it to. My parents are jumping for joy. NOT!
 
Prolonged QT is genetic. Make sure your mom takes both of you to a peds cardiologist ASAP so you can be evaluated and placed on the correct drugs or have a pacer or defibrillator placed if needed.

The usual symptoms are syncope (sudden loss of consciousness) or sudden death, typically occurring during physical activity or emotional upset. These most commonly begin in preteen to teenage years, but may present from a few days of age to middle age. The syncopal episodes are often misdiagnosed as the common faint (vasovagal event) or a seizure.

WHAT ARE KNOWN TRIGGERS IN LONG QT SYNDROME?

+ Swimming, running

+ Startle: An alarm clock, a loud horn, a ringing phone

+ Emotions: anger, crying, test taking or other stressful situations

+ Sudden death may also occur during sleep

CAN HEAT BE A TRIGGER IN LONG QT SYNDROME?

It has been noticed that several cardiac arrests occur during summer time. But it is not sure if it this may be an excess in statistical terms. It is however hard to define if these cardiac arrests are related to a specific "risk" due to heat or sweating or if it is mainly a reflection of increased physical activity, excitement and playing during the summer. The only advice patients with long QT syndrome are given is to avoid excessive fluid loss with sweating and to assume potassium supplements through diet.

How is LQTS treated?

Treatment for LQTS may include lifestyle changes, medicines, or surgery.

Lifestyle changes

If you are active in competitive sports, talk to your doctor about how this may affect your condition. Often, once treatment in started, patients with LQTS can participate in recreational sports or other activities in moderation. If you have episodes of fainting while you exercise, you may want to think about exercising with a friend or a family member who can call for help if you need it.

Medicines

Medicines called beta-blockers are the most common type of medicine given to patients with LQTS. These medicines do not cure LQTS, but they have been shown to reduce the symptoms of LQTS for those who have them. Beta-blockers are also effective for patients who have been diagnosed with LQTS but do not have any symptoms. In these cases, doctors will most likely prescribe a beta-blocker to prevent the symptoms of LQTS.

Surgery

When LQTS causes uncontrolled ventricular fibrillation, you might need an implantable cardioverter defibrillator (ICD). An ICD is a device that sends an electric shock to your heart to restore a normal heartbeat. The device is placed under the skin of your chest or abdomen and is connected to leads, which are passed through your veins to your heart.

Take this to your mom and see the cardiologist this week.
We all want to see you at WDW in the future.
 
Be sure to go to the SADS foundation website: www.sads.org for lots more information about prolonged QT (also called Long QT syndrome.) You mentioned that your mom didn't know why you had it so young...actually, you've most likely had it since birth and just didn't know it. You are very lucky to have discovered it now so you can be treated and live a safe, happy life! (I know you don't feel lucky these days, but later you'll see it.) Many, many people don't discover long QT in their family until someone dies suddenly; and often it is a young, seemingly healthy person.

On the subject of WDW, once you're on appropriate meds (and possibly have a pacemaker/AICD) you'll probably be able to ride everything. However, it would be pretty dangerous for you to ride untreated. Such a bummer! (I know it, I've been there.) Hopefully you'll be able to see a cardiologist soon so that you can be on your way to Rock-n-roller coaster and Tower of Terror!!

Feel free to PM me with questions, although I'm leaving for WDW tomorrow and won't be back until next week. Until then, here's a hug. I know what you're going through. :hug:
 














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