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Wolff-Parkinson-White and Long QT syndrome, coexisting.

BKirsch
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Hi my name is Bonnie and I have a 4 year old daughter who has been diagnosed with having both Wolff-Parkinson-White syndrome and Long QT syndrome. I have yet to come across another person who has both syndromes. Once in an ER , a doctor told me he has never known anyone with both conditions and in fact he thought that they could not co-exist. Well I know that they can, but I was just wondering if it is rare. Please let me know if you know of anyone else who has both WPW and Long QT. Thank you!

Explore topics in this discussion:

Arrhythmia Heart failure Surgery Jaundice Atenolol Propranolol Phenobarbital Pregnancy Phototherapy Long QT syndrome Anxiety Pain Pacemaker Congestive heart failure High risk pregnancy

22 replies

samanthamr

Our daughter has been diagnosed with WPW. For the past few visits the doc has mentioned her QT length. Today he talked to us about genetic testing for Long QT syndrome. However, she is on amiodarone which could be the cause of the QT.

How is your daughter doing? When was she first diagnosed.

Look forward to hearing more about her.

BKirsch

Today, Hannah is doing good. She is to start kindergarten in 5 days. It is a little scary but she willl have an LVN with her at all times, so that makes me breathe a little easier.
Here is the story on how she was diagnosed:
Hannah fell on our hardwood floor when she was 2 1/2 yrs old. She damaged her front 2 teeth and had to have them pulled out. She was under general anesthesia for the procedure. Afterwards, the anesthesiologist came out and told me she thinks there is something wrong with her heart. Three weeks later she was seen by a cardiologist at Lucile Packard Children's Hospital at Stanford. She had some tests done and was diagnosed with the WPW. She was not put on medication, we were just told to watch for any symptoms. Four months later, Hannah had two episodes of abnormal rhythms. Her heartbeat was very fast and extremeley hard. Then in January of 2007 (Hannah was 3 in October) she came out of my room carrying a portable foot massager. It was heavy for her. She dropped it, said she wasn't feeling well, then went unconcious. She was out for about 45-50 seconds and then started to recover. I took her down to the children's hospital and her cardiologist admitted her into the hospital. It was a monday and she was to have the cardiac ablation done that friday. Because she was so young it would take a week to assemble the right team. Hannah was very sick, and very weak. She had so many tests and monitors on her. She was so brave. That friday they went in to fix the WPW, but it turned out very differently then we had hoped. They found the accessory pathway but it laid right on top of her regular pathway. They chose not to ablate it because more than likely she would have had to have a pacemaker put in. While in surgery, they got the reading from the WPW to stop and they noticed a very abnormal reading coming from the lower chambers of her heart. They tested it and found that Hannah also had long QT syndrome. She was in the hospital a total of eight nights. Hannah was put on atenolol and has restrictions on her activities. We are trained in CPR and we carry an AED with us wherever Hannah is. She wears a medic-alert bracelet and we educate everyone she comes in contact with. We are waiting for genetic testing to be approved by the insurance company. When Hannah is about 12yrs old she will probably have an ICD implanted.

If you don't mind I would like to know your daughter's story. How is your daughter doing now and how is the rest of your family? Thank you so much for posting. Bonnie

campingbabe4eva

Hello there. What exactly are the symptoms of WPW? They seem similar to LQT. My daughter is 9yo and had an ICD implanted last summer.

BKirsch

The symptoms of WPW include lightheadedness, chest pain, fatigue, palpitations, loss of conciousness, anxiety, and sometimes cardiac arrest. The symptoms for both WPW and LQTS are very similiar. That's why in my daughter's case it is hard to determine which one is causing which symptoms. What syndrome does your daughter have?

samanthamr

Sorry it took a few days to reply. We have kindof a long story. I had an emergency csection at 37 weeks due to excessive amniotic fluid and fluid in Ashlynn's abdomen. When she was born everything looked great. The next day she had very high jaundice levels. They were concerned because her direct jaundice was high which is abnormal. We were put on phototherapy for 3 days and then sent home with a bili-blanket. The next day we went in for blood work to check bili levels. Her levels had continued to elevate so we were readmitted to pediatric holding for high intensity phototherapy. After 2 days of that her levels had dropped significantly. During all of this they were testing her for liver failure and gall bladder blockage. She was taking phenobarbital and actecoal. We were going to have a HIDA scan done the next morning and if that came back negative we would be going home. That night when the nurses came to check her vitals her heart was racing. After 2 nurses attempted to get an accurate count they called in the ICU team. The room was flooded with people and they hooked her up to a monitor. Her heart was beating 300 beats per minute. They rushed her to ICU and for 6 hours tried to stabilize her. Finally they sedated her, indebated her and cardioverted her. For the next 2 and a half days she was indebated and sedated. When she came out of sedation she almost immediately went back into SVT. They tried a few medicines but by Friday said they didn't know what was wrong and she was taken by helicopter to All Children's in St. Pete, Fl. About 2 hours from our house by car. Once there the doctors seemed very calm and confident that it was an arrythmia problem. A few days later she was diagnosed with WPW by our electrophysiologist. We spent 3 and a half weeks there while they figured out the right dosages of medicine. She is on amiodarone and propranonal. The first month home was rocky and she had a lot of SVTs. Then things got tons better. She has been almost free of SVTs for over a month now. HOWEVER, our visit to the doc. this past Wednesday was when we heard about Long QT syndrome. He has been saying that her QT is a bit too long since she was 1 month but never gave it a name. We won't know much else until she is off the amiodarone, since it can cause a long QT. My husband and I both received EKGs and neither have long QT. So, everything is up in the air and i just have to worry for the next 4 months. Yeah fun. We are holding it together and trying to remember that God has a plan and a purpose.

BKirsch

I know it has been difficult for your family. Finding out there is something wrong with your child is shocking and heartbreaking. I know that with Hannah it has been a rollercoaster full of emotions. I was negative for LQTS too. My two other children just had their second EKG'S done. Their first (a year and a half ago) were negative. We assume her father carries it. We are no longer together and he has yet to be tested. I worry everyday for my daughter. She started kindergarten yesterday. I am lucky, the school district is providing an LVN to stay with her at all times. It lets me breathe a little easier. What matters is that she is happy and she knows she is deeply loved by so many people. I hope your daughter doesn't have LQTS and that it is just the medicine causing it. I too believe God has a plan and a purpose for us. We are blessed with our special children for a reason. Please let me know if there is anything you would like to know or talk about.

bortner

my son, Jackson, is 5 weeks old and was diagnosed w/ WPW at 23 days. i have long q.t. syndrome (as does my mother who has an ICD) and i have a pacemaker (this was put in one week after he was born). his pediatric EP feels like Jackson has long q.t. as well, but says he can't confirm it based on the ECG b/c of the WPW. so, we're waiting on the paperwork to get started on genetic testing...
he was diagnosed b/c he hadn't been acting quite right so we took him to the dr, and he was in SVT. apparently this had been going on for a few days b/c he was also in congestive heart failure. we spent a few days in the icu, then went home feeling confident in the diagnosis and knowing we would just have to wait and see what the genetic test had to say. well, a week and a half later, he began acting not quite right again so we listened to his heart rate and couldn't count it b/c it was too fast. so we go back to the ER, he's in SVT again, they convert him with Adenosine (sp?) again, stay in the icu again... they increased his meds (Propranolol) and sent him home. so i will def let you know if his long q.t. diagnosis is confirmed. from what i understand that is very rare for someone to have both, so we may just have very special children.

bortner

since my last post, we have been in and out of the hospital several times with more occurances of SVT. this makes a total of 4 occurances within 4 weeks. please, can you tell me how many times you guys had to go through this before Hannah's doctors considered the ablation? i know that part of the problem is 1)it is very risky since Jackson is so young (now 7wks) and 2)they want to eliminate any chance that this could be resolved by medication alone. however, as you know, it is horrifying and disheartening every time we go through this. even though it has been discribed to me as nothing more than a "nuisance", and i do realize that Jackson is convertible with Adenosine, that doesn't change the fact that watching your child endure this over and over again is less than undesirable. basically i've been told that this will keep happening until he is old enough to have the ablation. were you ever told anything like this??

samanthamr

Ashlynn had her first SVT at 7 days and for the next month she would have them almost everyday. Sometimes 4 a day. They told us it was a matter of "black magic" so to speak finding the right dose of medicine. They finally had her on a dosage of amiodarone and propranonal. At our 2 month visit they began guestioning long QT. We took her off the amiodarone at 4 months and her QT wave has returned to normal.
During our month at St Pete's we were also told it was no big deal. They even left her in an episode for almost an hour seeing how long it would take to break out on her own. I know ablations are not recommended this early and I also know that infant WPW is usually finished by 1 year. Our electrophysiologists quotes a 96% success rate after a year.
Let me know if you have more questions. Ashlynn is now 6 months and we have been SVT free for 2 months.

stevie13wonder

samanthamr
You had mentioned earlier about your baby having fluid in the abdomen. I lost one of my twin babies years ago and we now know it was from Long QT Syndrome. She also had fluid in her so this is why I am mentioning it. I have googled it and it does say that it can be fetal hydrops which is found in alot of Long QT babies. It is worth mentioning to your doctor.

BKirsch

bortner,
Sorry it took so long for me to get back to you. Hannah has been on a heart monitor for 30 days and having some problems so we have been a little busy to say the least. To answer your question, Hannah's doctors told us that the wpw could go away on it's own or she would have to have the ablation done if she became symptomatic. A few months later she became symptomatic and then went unconcious at home. That was when the doctors said they would do the ablation. Hannah has a carepage on www.carepages.com her carepage name is : AnAngelAmongUs. You can visit this if you would like to know more about Hannah's story. It was very risky with Hannah being only 3. As you might know they could not do the ablation and that is when they found out she has long qt as well. They were able to stop the flow from the wpw pathway long enough to confirm the long qt. These conditions are very hard for the families. It has been very difficult to watch my daughter in pain and in hospital beds. I know what you are going through and even with Hannah on medication she still has breakthrough episodes. I hope your son does not have long qt. Please keep me updated with what is going on with Jackson. I am here to help you in any way possible.

marcellacardona

My little boy had his third ablation last year, he was 11. They stoped the ablation because the problem was too close to his normal node. He is on two medicines, Atenolol and Fleconide. We are not ready to give up, we do not want to implant a pacemaker yet. We hope and pray that technology advances so we can have a successful ablation.
Good luck with your family.

bortner

thank you all so much for replying. as you know, its great to learn as much info as you can; and nothing is as valubale to me, then from hearing from your direct experiences. just as an update, we had 3 SVT runs this week so that means 3 hospital stays. right now we are at UAB hospital in birmingham, al (about 90 miles from home) and his pediatric EP brought him here for observation since he decided to add Flecainide in addition to jackson's Propranolol. to marcellacardona..
how old was your son when they began his meds? have you found these affective at all?? since these are so similar to jackson's meds, i'm just interested to know if it might help at all.

bortner

another question for everyone about WPW... has anyone been told that it can be intermittent (only show on the ECG sometimes)? i have had 3 drs tell me that isn't possible, but the actual EP said it is definately possible and can only show on some of the ECGs. obviously, i trust the EP but would like some conformation since that's the only source i've heard that from.

BKirsch

bortner, I personally have never been told it is intermittent. I know on all my daughter's ECG's (and she has had a ton of them) it always shows up. Does it show up only sometimes on your child's ECG's?

bortner

yes, only sometimes. i've been told by 3 drs (mind you, none of these are specialists) that WPW will ALWAYS show itself on an ECG; but the EP says it can be intermittent. he says that this leads him to believe that the accessory pathway is a weak one. but then again, if its so weak, why didn't just propranolol fix it? why are we now trying propranolol + flecainide? just some of my thoughts.

daffygirl90

I dont know if this thread is still being read or responded to but I am courios about WPW. While I was pregnant with my son who is not 17 days old I had increased amnotic fluid and I went into the hospital with contractions or I thought they were but they picked up the babys heart beat at 300 and I was sent to another hospital for it. The high risk pregnancy doctors did two different ultra sounds to look at the babys heart and they could not find nothing wrong with it. He was born 37 weeks and 5 days. We got released from the hospital and was home for one night before we had to go back to the hospital because he was in SVT. The hospital had to give him 2 injections of adenasin before he came out. They then sent us to Kosair Childrens Hospitall which is 1 1/2 hours from where we live. At the hospital they diganosed him with WPW and started him on propanalol that did not work so they put him on amiodarone which did not work as good so they put him on both and that was working good. His blood presure started dropping so they had to stop the propanlol and he started having SVTs again and also started having breathing problems they had to incubate him and he was like that for a week.They have had to restart his propanlol again and the SVTs has stopped again but his blood presure is dropping again it was down to 50 over 20 and his heart rate is dropping also as low as 73. We have been in the hospital everysince he was born in PICU. Has this happen to anyone else or is it just my son being stubburn?I am hoping for someone else to tell me it happen to them too but everything was alright. The cardioligist said that is the SVTs were not better after the weekend then we would have to do the ablation which he does not really want to do because he said my son is really to young to do that with. But with his blood preassure dropping they are having to drop the dose of prepanalol and I am afraid the SVTs are going to come back.

BKirsch

daffygirl90,
My daughter was diagnosed at 2 with wpw and at 3 diagnosed with lqts. They attempted an ablation in january of 2007. They never actually ablated it because the accessory pathway lays right on top of her primary pathway. If they were to ablate it she would have to be on a pacemaker for the rest of her life. They were going to do the ablation because of svt's and her losing consciousness. Hannah (my daughter, now 5) just recently had an episode in the hospital where her heart was pausing and her heart rate dropped as low as 52. She came out of it fine. These arrhythmia conditions are tricky. They seem to have a mind of their own. I know it is very worrisome to have a child with a heart condition. I know every time Hannah is in the hospital I find myself staring at the heart monitor and holding my breath. I feel for you and your family. I hope your son has no more svt's but if they do have to do the ablation then that can be the end of the wpw. I am curious, do the doctors know what part of your sons' heart the accessory pathway is located. My daughters cardiologist knew where my daughters was located by looking at her echo. Please let me know how your son is doing. He is strong and so are you.
- Bonnie

bortner

daffygirl90,

i read your post and just wanted to let you know that my son has not had that particular problem with his bloodpressure. i'm so sorry that you're having to go through this. its a terrible way to start your family with your new child. good luck with everything and i'll be praying for you and your family. keep us updated.

daffygirl90

I do not know if they know where it is at. I have never asked. He has not had an epasode in 48 hours and I am hoping he does not have anymore. If all goes well and he does not have anymore then we get to go home by the middle of the week.They started wening him off the drip of the amiodarone today and are starting him back on it orelly. The doctor did say that usually by the time they are a year old it goes away by itself but in 20 percent of the cases it comes back when they get older.

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