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My daughter developed an heart arrythmia called PJRT, Permanent Junctional Reciprocating Tachycardia at 2 months of age. Her condition is uncommon and I'm looking for any other patients with the same diagnosis. She is 22 months now and her arrythmia is controlled by the medications amiodarone and propranolol (which is a beta blocker).
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Heart transplant Heart failure Surgery Propranolol Falls Phenergan Pregnancy Prevacid Inderal Beta blockers Digoxin Stress Asthma Arrhythmia Allergies Physical therapy Pacemaker Metoprolol Speech therapy
Hi;
My little boy has been on amiodarone for 5 years. He also takes Fleconide. I am not sure if propranolol is the the same thing. My little boy has done ok. with the amiodarone. I understand is not a good drug to be on for more than 2 years, but we do not have a choice. He gets tested 2 times a year for liver funtion. So far we have not had any side-effects. We are currently trying to manage his arrhythmia without amiodarone, but it doesn't seem to be working. We'll see what we have to do next. God bless.
My daughter developed the condition while I was carrying her. It was discovered at 36 weeks. I was hospitalized and given Digoxin to try and control her heart rate. She was delivered C-section at 37 weeks. The doctors were not sure what was causing the high heart rate, but after she was born and hospitalized for 3 weeks with a heart rate ranging from 180 - 280 they confirmed that she had PJRT. They could not get her heart rate to convert and used adenosine several times to restart her heart with hopes of lowering the rate. Eventually they found the right combination and dosage of medication to keep it under control. They placed her on propanalol and flecainide every 8 hours. There was a glimmer of hope that she would outgrow the arrythmia, but no such luck at this point. She is 24 months old and is still taking the two medications. Her dosage has been increased as she grows. The doctor is planning on performing an ablation when she is a little bigger. I worry about her condition constantly and wonder why all the time. Does anyone else have the same questions as me?
Hello. I also share your same concerns and questions. Doctors have told us PJRT is uncommon but I've been unable to find much information about this arrythmia. It did not present with my daughter until she was 2 months old. We later learned she was in and out of high heart rates for several days which caused her heart to become enlarged. They also tried adenosine several times in the ER. While trying to stabilize her in the CICU she suffered respiratory and cardiac arrest and was placed on ECMO or a heart/lung machine for four days. Fortunately, her heart recovered and they were able to find the right combination of medication. She was hospitalized for six weeks. She is currently on Amiodarone and Propranolol and is 23 months old. We thought she had outgrown it as well and was arrythmia free for almost a year. In January, after an ear infection, her rate creeped up again and they were able to see the inverted P wave on a holter monitor reading. So we are also waiting for her an ablation. Have your doctors given an yindication when they might attempt your daughter's ablation? I also understand they have to be in the arrythmia during the procedure in order to find the incorrect pathway.
Our doctor also indicated that it could appear that they've outgrown it when it actually is lying dormant and may not reappear until they hit puberty, so I've changed my thinking on her outgrowing it and think an ablation will be the only way to know for certain it is corrected.
I'm also curious if your daughter has any symptoms when her rate rises. The only way we knew something was wrong initially is that she didn't want to nurse. During her most recent reoccurance, she was sleeping silently and there are no outward symptoms. We use a pulsox machine that reads her heart rate and hook her up every evening.
I pray both our girls can soon put this behind them. I know things could be much worse for them and us but it is worrisome. I wonder about long term affects of this medication and the risks for ablation.
-Tammy Marzano
Hello. Thank you for responding back to my entry. It is nice to have someone other than a doctor to talk with about the girls' condition. It sounds as though we are fortunate that they found our little girl's high heart rate before birth during a routine check-up and were prepared to begin treating her when she was delivered. They told us that most times it is not found until the baby is taken home and symptoms surface.
At first, we were told that it would be best if she were 3 or 4 years old before performing the ablation. The doctor said that the bigger the heart, the less chance of complications. He said if they performed the ablation while her heart was too small, we could run the risk of eliminating the wrong pathway and needing a pacemaker. We visit the Children's Hospital every 3 months to see her electrophysiologist. The past two visits the doctor has said that we could go ahead with the ablation now if we choose. She turned 2 in February and is 28 pounds. I'm still concerned about the change of thought on when the ablation could be performed. She is actually small for her age, so I know that it is not due to her growth. The only thing I can figure out is that she has had 3 different breakthroughs in the past year. One of which landed her in the hospital for 5 days. She became ill with the Rotavirus, and it really affected her heart. My husband and I want to do the procedure as soon as possible so that we can take her off of the medication (we worry about side effects), but at the same time we don't want to rush it and cause other problems. We are not sure what to do. Have you been told when they may perform your daughter's ablation? I've been told that an ablation may not fix the problem and the arrythmia may resurface again. Have you heard this too? I am also under the impression that the arrythmia will need to be present while performing the ablation. I too worry about the ablation risks.
My daughter really doesn't have any tell-tale signs when her heart rate is up either. I usually can tell because she is squirmy, restless, almost hyper. I also still pick her up and carry her around quite a bit, so I can tell immediately when I am holding her because you can feel her heart beating rapidly through her chest. We have a stethoscope and listen to her heart regularly with it. We asked the doctors about a monitor at home where we could hook her up at night for our peace of mind, but they discouraged it. Their reasoning was that it would go off many times when she was not in SVT due to her movement and also due to outside interferences. So far, we have done okay without it. However there are times when I wish we had something more than a stethoscope to check her, especially when we discover she is in SVT. It worries me not to know how long it was going on before I discovered it. The doctors try to reassure my that she would have to be in tachycardia for several days before it would damage her heart, and even then her heart would repair itself once she converted back to normal rhythm. Of course, this is all good if you are a doctor, but as a mom I still worry. How does your monitor work? Do you find it goes off several times when she is not in tachycardia?
I wonder if your little girl has any other complications. My first born who is now 5 years old was born healthy, has had no health problems, and has always been in the top percentage for weight and height. However, when my second daughter was born with PJRT I assumed that this would be the only health problem she would have. She has been in the lower percentage for height and weight since she was born. At 3 months old we took her to a gastroenterologist because she could not eat, and when she did would forcefully expel it. They put her on Prevacid 3 times a day and she is still taking it now. She also was having major issues last winter with with breathing and had a severe cough all winter long. We took her to a pulmonologist and they diagnosed her with asthma. She now has an asthma plan and takes a maintenance breathing treatment 2 times in the morning and 2 times at night. The problem with the asthma medications is that they can affect the heart rate, so it is a little more tricky to treat her. She also has had a CT scan because her head was larger than normal for her age when she around 9 months old. That, thank the lord, turned out to be just a precautionary step and nothing came from it. However, all of these things seem odd to me considering my first born has had no health problems and my pregnancy was textbook with my second up until 36 weeks. I wonder if the past heart medications (adenosine, propafenone, digoxin) along with the current medications (flecainide and propanalol) could cause any of this. I also wonder if these health problems are associated with something that happened during pregnancy, or if they are just all unrelated. Do you have any other health concerns with your little girl?
I too know that there are others out there that are much worse, but I still worry as well. Sorry for rambling forever. It is just really nice to have someone else to talk to. I will keep praying for our little girls.
-Melissa
I found our original string of messages...
Brianna has been in good health since her initial hospitalization but it is hard on her heart. She's had the gastro bug and an ear infection. Both required hospitalization for a day or two because of her heart rate. She is definitely underweight only 22 pounds at 23 months, 5th percentile on the growth chart. She eats well and often and I think the medication cause her to metabolize differently.
She had physical therapy for a year and didn't walk until 17-18 months, fortunately she is running now. She continues to have speech therapy and only has a dozen or so words in her vocabulary. They compare her delays to a premature baby and feel it was due to her being down for several weeks when she was 2-3 months of age.
My son is 6, also a textbook pregnancy and delivered full term, and has been 80-90% for weight and height.
I agree it is nice to compare notes and share with another mom who is walking in the same shoes on a daily basis.
Take Care
I hope you don't mind if I join in here, my DS was diagnosed at 6 months gestation, we were put on Amiodarone, Digoxin, and Phenergan (for me!). It worked for a while, but it's apparently pretty resistant because it didn't work for long and we were in and out of the hospital for weeks. We got discharged to go to Milwaukee for a fetal ekg (which was an adventure all on it's own!) The meds stopped working, so for a month, we had 2 biophysical profiles and an echo every day to look for heart failure. we were induced 19 days early and he actually converted at birth for three days. We were going to take him home when he went back into svt's and he stayed there for 42 days while they tried every combination of Propanolol (which is Inderal), Digoxin, Amiodarone, and Flecainide known to man. They scheduled his ablation for a Monday, and the Saturday before, we finally got it under control with Propanalol 3x a day and Flecainide 2x a day.
At 1 year we tried to find out if he had outgrown it and weaned him off of his meds and put him on a monitor that would go off automatically if he went outside of the limits they programmed into it. About 6 days after we started it his monitor was continuously going off. He had a 3 hour episode, but finally came out of it after my husband and I (with the electrophysiologist on the phone) spent 20 minutes alternating holding him upside down and packing his head in ice. He also has these episodes sometimes where his heart beats too fast and doesn't refill so it sounds like he misses beats and he gets non-responsive where we can't rouse him. We had an EEG but it didn't show anything.
We have a checkup on the 8th of May coming up, but when I was checking him on our doppler (we have one from when he was in-utero and it works great for listening to him still and even has the digital readout.) he had a resting heartrate of 179 for a brief period so I'm going to try to get him in earlier.
Dr. Z says if it's not medically necessary to do him earlier, we are going to wait until he's 4 to ablate him. He's 2 1/2 now.
I'm sure there's a bunch of other stuff I'm forgetting, but it's a novel already! ;)
It's nice to be able to share this stuff with people who know what's going on.
I'm so tired of being constantly afraid for him.
Andi
Thanks for joining in and sharing you son's story. I appreciate learning that others share my daughter's diagnosis. It's also nice to share stories and concerns with other moms who understand.
Is your son underweight for his age?
Does his rate increase when he gets sick with cold or flu?
Is he still on the two meds and has his dosage needed to be increased since you tried to wean him at age one?
Did you doctor indicate if the ablation would correct the problem permanently or if it could reoccur when they are older?
My daughter was also hospitalized for 42 days starting at 2 months of age. 42 from birth had to have been difficult.
God Bless you and your son.
-Tammy
Sorry I didn't get back sooner! All of my kids are on the slender side, so he's average for us. He doesn't get noticeably higher every time he's sick or tired, it's more random and the meds are usually doing their job.
He's down to just the Flecaininde right now, I don't know if they will change that Thurs at his next appt. His resting rate has been increasing. We've increased the dosage twice. The first time by 50% and the second time by %25.
Dr. Z says that the rfa will either 'cure him totally, not do a thing, or somewhere in the middle'
It stunk leaving my newborn in the hospital, but we were expecting it. When he was born we had so many people in there waiting for him to come out everyone should have brought a dish and we could have had a potluck. I would have hated to get my baby home and then bring him back to the hospital months later and left him there. Either way it stinks.
Do you (or anyone else) get NICU flashbacks? Sometimes I just get to thinking about it and I can practically smell the smells and hear the monitors and all of the feelings come rushing back. I actually kind of miss it as much as I hate it. I think it must be just the ritual. I don't know.
Andi
I was pregnant at 30 weeks, when my unborn had a high rate (210 beats/second) and his heart was very tired. He was born at 37 weeks (c-section). When he was one week old, he was diagnosed PJRT. I was told there has been no such case ever before and it seemd there where no drugs to help him. At the age of 1 month, propafenon was found to help him. Now he is over a year old, and his heart has slightly got better.
But I am surprised and very much reliefed that there are others, I am not alone with this!
Hello my son was born 3 months early we thought he was in distress which in actuality turned out to be PJRT. He was put on a number of different medications which never helped. It didnt seem to bother him at all he was normal in every way besides his heart racing to over 200 bpm on almost a constant basis even while fast asleep. When he was 4 he had his first Ablation done and it didnt work the first time. But he was sent back in a month later to have it done the second time and he is now almost 8 and has had no problems whatsoever and has been on no medications at all!!
Okay...so we were just informed that our 3 month old baby girl has PJRT. This has left us devastated. We have so little information about this condition and are worried sick. We just spent 7 days in the ICU at our local children's hospital. If anyone has any information that you can share with us, then please do. We have heard that the Cleveland Clinic in Ohio has some experience with this. Does anyone know much about it? Thank you for any help that you can offer us.
I am glad you and your daughter are doing ok. I keep up with you guys whenever I can. I have gone through this for 12 years. My son was diagnosed with VT when he was in-utero. I was hospitalized and tried several medication to control his rate, but nothing worked. They endused me, and he was place under aminiodorone and Fleconide. He did ok. For a while, but then he got sick again, so we went back to the hospital for 4 weeks; got it under controlled but, have been in the hospital many times again.
We did one ablation when he was 18 months, did not work. Did another one when he was 4, did not work. Had another one when he was 11, did not work and we were advice that his problem was on top of his normal node; there is no way to correct his problem.
He is on two meds. But he does wonderful. He has never showed any signs of discomfort when his hart rate may be beating at 180 up to 250. He is an amazing Kid. He plays sports of all sorts. No one would ever know that he has a heart problem. My husband and I have tried to keep everything normal for him. We have an older child that has no health problems what so ever. She watches out for Alexander. He is a normal mischievous boy, he is tall, and normal weight. Very smart kid too. I can tell that he is having a hart time dealing with the fact that has a heart problem. He does not like people to know that he takes medicine. He asked that Dr. if there was a way for him to take his meds in the morning and evening, because he did not want to take it during school hours. So far so Good. We do a lot of praying for Alexander it is the only thing that works.
I wish you well, and pray God to heal your child.
Merry Christmas!
Hello-
Our daughter (now 2 1/2 years old) developed PJRT when she was 2 months old. Her condition went undetected because there were no symptoms other than her being fussy and not wanting to nurse. Doctors feel her rate was elevated (180-240 bpm) for several days. This caused her heart to become enlarged and for her to stop breathing and her heart stopped. Fortunately she was in the CICU when this occured and they were able to place her on a heart and lung bypass machine to give her heart a chance to rest. There was talk of a heart transplant but by God's grace her heart began to heal on its own. I'm curious how they detected your daughter's arrythmia and pray it was not as critical as ours.
We see an electrophysiology cardiologist Dr. Beerman at the Children's Hospital in Pittsburgh. He's one of the best but when we were first learning about PJRT we were also told of a cardiologist at Cleveland Clinic who was also very good.
Brianna takes two oral cardiac medications, Amiodarone 5ml twice a day and Propranolol 2.5ml three times a day. We also use a pulsox machine that displays her oxygen saturation and heart rate every evening. I would highly recommend getting your doctor to prescribe one of these for your home. Ours is rented from Apria Healthcare and is covered by our insurance plan. We've been able to detect when she falls back into a high heart rate and increase medication doses as she grew her first year. Her last occurance was in January and happened after an ear infection. Her rate always seems to rise when she gets sick. She has only had to be hospitalized twice since her initial 6 week stay. I had to insist on having a machine to monitor her, mostly because doctors feel is becomes a nuscience to parents. To me it is a lifesaver and enables us to have some peace of mind and go on with some normalcy. Her doctor has indicated that he can perform an ablation when she is larger (due to the instruments they use) via a catherization procedure (not an open heart surgery). It can either not work, partially work which means it could reoccur potentially when she hits puberty, or remedy the problem. I just want her to eventually be able to tell me that her heart is racing and for her to be able to know when it is happening. Please reply with any questions you have. I know how scary the uncertainty can be.
Well, my daughter, Kaelyn, had been sick with a cold or allergies for about 4 weeks or so and seemed to be having trouble breathing so we took her to the ER. Upon arrival, they checked her vitals and discovered her heartrate to be 308 bpm. They tried multiple things to cardiovert her but nothing was successful. They called 911 and had her transferred to Kosair Children's Hospital where we stayed for 8 days in the ICU. She stayed in SVT for more than 20 hours.
We have learned that Kaelyn was born with the condition. In fact, we have been told that PJRT develops within the first 6 weeks after conception. She had one short episode of SVT at birth and spent the night in the NICU. At that time, they assumed that it was from the stress of the delivery.
She has fussy moments and I had been blaming it on gas since I breastfeed her but we now know it is actually her heart causing her to be fussy. She was also having a lot of trouble sleeping and we have learned that it is because we have been laying her flat when in fact we should have had her head elevated. For whatever reason, patients with PJRT have trouble when laying flat...it hurts their hearts.
Right now, Kaelyn is taking Amiodarone (8ml 3 times per day). She didn't respond to the beta blockers that they tried. They are currently having her wear holter monitors twice a week. She seems to be having the SVT's once a day or so and her heartrate will be from 250-310 bpm.
She sees a pediatric cardiologist as well as the electrophysiologist. The two doctors seem to disagree about what is stimulating her. My husband and I have noticed that when we are in large crowds(more than 6 people) then her heart races. She also has SVT episodes when she is held by many different people so we won't be attending any family functions this holiday season. The doctors have also stated that when she gets sick, her heart will race even more. There is also the question of whether r not to send her to daycare since me and my husband both work full-time.
We want to get the best care that we can for her but we aren't exactly sure where to go. We have heard about the Clevelnad Clinic and then there is a group in Oklahoma. If you have any additional information, please feel free to pass it along. We appreciate any and all information.
Right now our best option is prayer...we have her on 18 or so different prayer lists. With the rareness of this condition, prayer has to help. We are so scared for her and her future.
Hi. I was search the web for information on PJRT and came across this posting. My son was diagnosed with PJRT when I was pregnant. The doctors had me take Digoxin while I was pregnant to try to manage his heart rate with no avail. He is now 16 months old and currently takes Digoxin twice a day and Propranolol three times a day. It seems to be working for him pretty well. He has not shown any syptoms for about 6 months now. We follow up at Children's Mercy about every 6 months. The doctors initially thought that it would go away at one year of age. Well, that did not happen. Our last doctors appointment was yesterday. There was no episode of SVT while he was there, but the doctors do not want to chance anything. So, the new plan is to leave him on his current doses of meds and let him outgrow them (since his doses are based on his weight). If he does not have any episodes between now and July 2, then they will try taking him off of his medications. I really hope it works out that way! If he does, then we will simply adjust his meds for his weight.
I remember feeling the feeling of knowin that something wasn't right. I had already been on bed rest for about 4 weeks and at my 28th week of pregnancy I had this weird feeling of uncertainty. With my previous lost my doctor act as if i was just paranoid. He did sonograms and periodically check her heart rate and everything seemed to be okay until i couldn't take this feeling anymore. a mother knows when her child is in danger. well after conviencing the nurse to check my baby's heart rate for the 10th time that day she had a heart rateup at 240 bpm. I was taken for an emergency c-section so that they can monitor her outside the womb. as if her being 12weeks early wasn't enough to be concerned about a week later they came up with this pjrt dianogsis. I pray everyday that she will outgrow this condition and live life. she take's 2 medicines 5 times a day. her heart rate was hard to control in the begining. she is now 9 months old. she hasn't had any complications so far. maybe it's because it was caught so early. i just don't know what to expect. there isn't to many people to talk to cause no one knows about this condition. that's why iam glad i found this site. Mckailyn Lyfe is my joy. I am trying to find a balance because I don't want to be overly concerned be can't ignore it either.
Hello.
This was our first meeting with other parents to children with PJRT! My english is not very good, but I do my best: Our son is now 17 months, and use flecainide and metoprolol, the plan is to see if he can grow out of medication the next half year. Our doctor says this is very uncertain, time will show, Anybody who have experienced that their child has been sucessfully taken off medication? there are several of you that mention ablation treatment: has this been done with cryotherapy(cold) or radiofrequence ablation (warm) ?
Hello my daughter is 4 months now and was diagnosed with pjrt when i was 38 weeks pregnant so i had emergency c setion. My baby was started on propranolol , flecainide and amiodarone her heart rate was 220 to 240 but since the medications its been around 130 and her cardiologist has removed the flecainide . she is doing well no other complications.. it does not seem to bother her. I am in the medical field but that does not help when your own baby is sick.. I am told that when she gets older she will have the oblation done..
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