Seeking Other Families with Children with Long Qt Syndrome and or Advice

Dear Angie-

You have gotten some very good advice (as usual) from some of the members here...

I just wanted to share that I had twins born prematurely in 1996. One twin also had severe congenital heart issues (HLHS). That, in conjunction with her prematurity, caused the docs to declare that Shannon was 'incompatible with life'...HA! It was/is a LONG road with her...and TRUST me, when I finally got her home from the hospital after 3 years and one week...on a vent with a trach...with feeding tube...and told she would never walk or talk...I was PETRIFIED of her! We had nurses for some hours of the day, but even when they were there (and especially when they were not) I would watch her and just be afraid.

Slowly, over time, she shed the various technology. Improvements in medical procedures and various drugs now available for the pediatric population have helped. She does have a pacemaker now...and it is reasonably simple surgery. We download it via phone periodically...and 'tweak' it with the cardio/physicist. It will need a battery replacement in a few years.

I guess what I am saying is that at SOME point on this journey I decided to not be afraid anymore...and let her live! Keeping her room and existence like a hospital was not really living. I let her attend regular kindergarten with her twin (we had done home bound for a while)...and she remains in public school now. In fact, will make the transition to HS this fall...Who knew?!

I still worry about shannon...as I do ALL my children. But, at some point I realized that I cannot predict the future of ANY of my children. And I made the decision to embrace each day as the gift that it is...for ALL of us.

I strive to make shannon's life as as 'typical' as it can be...and it is! I wish you peace with this...combined with great medical intervention and compassion from the medical community...

Private me if you want to talk
Michele/cat

PS
I am writing a book about this journey...the working title is "Compatible With Life"...lol...

And shannon IS!

My son (now 3) was born with a complex congenital heart defect. He had 2 open heart surgeries before he turned 6 months and will need another next summer. He also has SVT. It is generally controlled by medication, but he will still have episodes. I belong to a great CHD support group through our children's hospital and one of the kiddos has LQTS. I know he has a ICD. Is that a possibility for your daughter?

It will take a while not to worry. I slept very little and made myself sick my son's entire first year. He had 2 surgeries, was on a feeding tube, and had to be taken by ambulance to the hospital twice. Slowly, I relaxed and really see him as a normal kid! Last August he was taken by helicopter to the hospital and that caused my anxiety to flair up again. He was doing well for so long and then a SVT episode came out of nowhere. He was hospitalized again last October for dehydration.

Life is very precious, but you have to let yourself and your daughter live!

You should seek out further medical advice. This is a pretty rare syndrome and you need to find the doctor who will not leave you in the dark with your fears. Check into having your daughter fitted with a defibulator. This would be the safest method and would allow her to have a somewhat normal life. You can't put your daughter on a shelf. I understand you just want to pull your daughter out of life and put her in a bubble. Unfortunetly, even that would be no guarantee.
I did homeschool. You should be able to find homeschool groups in your area that can help show you various approaches to homeschooling and the literature they use and what is neccesary and needed by your state to be within the law.
A few years ago I lost a nephew, age 12, to Long QT Syndrome. Your ahead of the game with your daughter. You have a chance to change her fate. The medical community is always making advances. So many parents find out only after the autopsy their child was afflicted. Do beleive that you have been given a blessing.

I have no advice or info to give. Just wanted to say I'm sorry you're going through this. I hope you find the information that will help you. God bless you and your family!

My friend Shawn has this. Sadly, he was diagnosed after his father suddenly passed away and they found out long qt syndrome was the cause. Shawn was tested and immediately went into surgery to have a defibulator implanted in his chest. Basically it will shock him if need be. He has had it for 10 years and has had it replaced once. Apparently they don't have a long "shelf life" and he will need it modified once every 5-8 years. He does have to be very cautious not to get worked up and can't participate in strenuous activities. He takes xanax to keep him calm and he can't drink caffeine or energy drinks. His daughter has been tested and she doesn't have it. They have decided not to have anymore children because unfortunately it is often passed on through genetics.

He doesn't let this rule his life, and you should not either. Whatever the plan for your daughter's life is, so shall it be. Enjoy her, educate everyone around you on this syndrome, but don't let it run your lives.

I am so sorry this is happening to you! My mother died of Long QT Syndrome. She was misdiagnosed her whole life, they told her she had epilepsy. At the age of 33, they finally figured out she did not have epilepsy but Long QT. Sadly, it was too late. Shortly after, she died. But she made it to 33 with this disease, imagine if she had been treated properly, perhaps she might still be here. Me and all my sisters were tested, we don't have it. But I was terrified when my daughter was born that somehow I might have passed it to her even though I didn't have it myself. She was tested, she doesn't have it.

I can't imagine what you are going through. My prayers are with you and your daughter. I wish I could help with the defibulator. Perhaps a fundraiser? Could you contact a local church, newspaper or local tv station? If you get your story out, I bet the community would want to help. If you want to private message me, maybe we could come up with some ideas for a fundraiser. (to private message someone, click on their name, and you will see an option to send a private message. Click on your own name in the top right hand corner of the screen to check your inbox for any new messages).

I will pray for your daughter. I know what this syndrome can do to a person, and it is very scary. But with proper medical attention, your daughter can live a full happy life. Contact me if you want some fundraiser ideas. I wish you all the best. Blessings.

Angie,

I was reading your post and had to look up long QT syndrome as I was not familiar with it. I found this story on the Mayo Clinic website. http://www.mayoclinic.org/patientstories/story-142.html
Dustin has a defibrillator implanted in his chest.

There is some other good information on the Mayo Clinic website as well to give you more information and help.

Take comfort in the fact that your daughter was diagnosed early...

I hope this helps.

I'm sorry you're going through this. I'm going to PM you with some homeschooling info:). I hope you get some helpful responses to your question!
God bless,
Loni

I'm so sorry you have to go through this. I don't have much to say except how it was good that you know about this now and can take further steps. I've heard both of using a defribulator and beta blockers to regulate this. I think it depends on the severity of the beat spacing (EKGs can help detect how severe the condition is). I'd suggest a second opinion, as I've been reading about children as young as your daughter getting internal defribulators.

We may end up being in the same boat as your family - my husband and I are waiting for test results for LQTS due to losing our second son during childbirth, and if either one of us has it, we have a 50% chance of passing it on to either future children, or our 3 year old may have it (so we'd test him next). One thing the genetic counselors told us is that this unfortunately affects mostly children - adults (definitely ones in late-30s to 40s) tend not to have complications from this condition. However, have YOU been tested? If not, I would suggest that you find out if you or your partner has the genetic markers, too - cover all your bases. Good luck.

Updated

I'm so sorry you have to go through this. I don't have much to say except how it was good that you know about this now and can take further steps. I've heard both of using a defribulator and beta blockers to regulate this. I think it depends on the severity of the beat spacing (EKGs can help detect how severe the condition is). I'd suggest a second opinion, as I've been reading about children as young as your daughter getting internal defribulators.

We may end up being in the same boat as your family - my husband and I are waiting for test results for LQTS due to losing our second son during childbirth, and if either one of us has it, we have a 50% chance of passing it on to either future children, or our 3 year old may have it (so we'd test him next). One thing the genetic counselors told us is that this unfortunately affects mostly children - adults (definitely ones in late-30s to 40s) tend not to have complications from this condition. However, have YOU been tested? If not, I would suggest that you find out if you or your partner has the genetic markers, too - cover all your bases. Good luck.

Hi there,

I just wanted to share my experience briefly. It is a difficult diagnosis to deal with. I actually was diagnosed with this when I was 17 after having a syncope. I was treated for it shortly after and had been put on inderol and had a pacemaker implanted as well.

Long story short, after I was married I was dealing with other medical issues related to my heart (caused by the pacemaker's settings I found out later). I went to the Mayo Clinic in Rochester for their opinion since I was planning to have kids. I saw the doctor there that specializes in Long Qt Syndrome and after genetic testing and hospital stays/more testing they determined that they didn't think I had it. My results were in the gray area and they couldn't rule it out 100% because I was originally diagnosed. I'm no longer treated for it but visit there every couple of years (3 children later) for follow ups.

The doctors there are AMAZING!!! The experience was so much better than here. I highly recommend you try and get your daughter in there if you have good insurance. I'm happy to give you the doctor's name that I saw. I think a physician has to refer you there.

Send me a message if you want more information or have questions. I did more research on it than the average person. Your daughter will probably need a defibrillator implanted (I know another girl that had that). They might give her medication.

It is not curable but IS treatable! It is hard at first but you get used to it. I REALLY don't think it is a full reason to homeschool your daughter. Just get to the right doctors. Thanks!

Also I had 2 HORRIBLE experiences with Children's Memorial Hospital personally and with my twins. I would get second and third opinions but mainly I'd find a way to get to Mayo Clinic.

I'm so sorry to learn of your daughter's diagnosis. However, trying to focus on the bright side, knowledge is power. You have the ability to treat the arrythmia and know to have a defibrilator. My first cousin lost a son at age 15 to long QT syndrome. He was in a movie theater with some friends when a loud sound startled him at the wrong point in the heart beat. He slumped down in his seat, but it wasn't until someone seated behind the group of teens leaned forward and asked if everything was okay that the friends realized that my cousin had died. His two brothers both have since been diagnosed with the condition and my understanding is that they are on beta blockers for heart rate regulation. You could try SADS.org for more information. Good luck.