To Parents of Young Children with Long QT

• By ncz727
• Posted March 6, 2008 at 10:20 am
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Hello Genell, thanks again! It is a relief to me to hear from another mother out there going through similar experiences. I completely relate to your feeling the need to be apologetic when explaining everything to a new person. I had thought having the ICD would alleviate some fears, but I see from your experience it just adds additional complications and worries. The anxiety issue for your daughter is very true as well. My daughter has severe anxiety/panic attacks from time to time, and it has been three years since her last event. She cannot get over the memories of passing out in public and waking to frightened people and ambulances. She is terrified to be alone and only within this last year has been able to attend after school activities without begging me to take her back home where she felt safe. I laughed at your hiding in the back of the movie theater! I would do the same thing! For a long time my daughter was afraid to go anywhere - even school. Getting through each day was very difficult. Now she's a little older and becoming brave. Now it's my turn to be afraid, dropping her off at activities and wondering what and how much to tell people without embarrasing her. Learning as I go along. It is wonderful that your daughter's friends at age 14 can be extra eyes for you and know what to do if a situation arises. After hearing from you I feel better and more secure that I'm doing things correctly. Thanks again!

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• By Genell
• Posted March 5, 2008 at 3:17 pm
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Dear, ncz727 you are welcome!
My approach with any new person in contact with my daughter or son is that I don’t tell everyone, only the person in charge i.e. the parent, coach, and teacher. Before my daughter had her ICD implanted it was very scary having her out of my sight. My actions or reactions to my daughter’s situation might have been overly conscious, here it goes…
When she was invited to birthday parties I would hang around in the background if I didn’t trust the situation for her or didn’t want to go through the WHOLE story about her condition, she didn’t mind this in the beginning but as she reached 11 and 12 she hated it! If I knew the family and the parents were the “responsible” type then I would leave her at the party leaving my contact information and instruction of what to do. The summer months were always the hardest because of pool parties and her wanting to hang out at the swimming pool with her friends without mom in tow. I had to explain to her swimming is where I drew the line to supervision she absolutely had to have someone “eyes on her” at all times while she swam. I am lucky I have a daughter who is several years older who really helped in taking my younger daughter out and watched her. My daughter participated in Girl Scouts and went to camp; two parents were designated as leaders to whom I informed them of what to do in an event. My daughter participated in a choir camp for a week this summer and she had to take her transmitter with her. On her choir application I explained her condition and that she would require a phone jack, but when I checked her in I met with her mentors (6 in all) and did the run down on her condition and explained how and where to place her transmitter on her ICD if she needs to transmit. I have an emergency plan typed-up and laminated that I give out, such as to her camp mentors, it has her condition, meds, doctor names and numbers etc. Luckily, my daughter has a wireless ICD that automatically transmit while she sleeps, the device is used manually only when she is not feeling great, it is transmitted directly to the heart station lab where her doctor is. Her doctor is a 3 hours car ride away. We do not have a pediatric cardiology clinic locally. We are fairly lucky that we live in a town of 70,000 or so and pretty much everyone my daughters age knows her story and accepts it without alienating her from play dates, parties etc. I know most people do not have the luxury of time to be ‘joined at the hip” with their children, this is just how I handled it. My daughter never really liked sleeping over at friends much and preferred her friends to stay at her home, this worked well. However, there were times when she did and I would let the parent know that if she fainted to call 911 immediately then call me. I just explained that she had an irregular heart rhythm disorder that could be potentially fatal if she passed out. We did not have an AED, nor was one suggested at the time. I see absolutely no problem in asking the parent if they felt comfortable using the AED device and if they replied no, then I would suggest having their child over at your home. When my daughter was in dance at the age of 9 and 10 I informed the owner and her instructor of her condition and let them know what they needed to do in the case of an event. In your situation I would select a contact person at each of your daughters activities and tell them what her condition was, and for your daughter’s safety, I would suggest that they needed to select a person to administer the AED. I felt as though I had to be apologetic at times but soon I got over it and just let people know it might be an inconvenience but they had to know.
I remember how hard it was on my daughter before having the ICD, every rehearsal, activity there was mom…However, I feel that this has given us a special connection we have a great relationship. My daughter’s doctor believes she has what he refers to as “a double whammy”. Yes, Type II LQT has been identified but he believes she has another mutated gene of another type of LQT not yet identified on my side of the family. I have had several family members die young and suddenly.
Most of her classmates have grown-up with her having this condition (she is now in 8th grade) and have had many questions especially with her ICD scar. This year her science teacher, being very curious, asked permission to introduce a “heart” topic for discussion where he introduced the medical facts and presented a film on LQT for the whole 8th grade. My daughter felt find with this and after the presentation the teacher held a question and answer session so the kids could ask my daughter, what ever they wanted, about her condition, but had to drop all questions after the topic discussion, (she was tired of being asked if she was going to die, what the scar on her chest was, etc) This has helped her deal with her condition as a teen and is more accepting of her condition. I do have to say that my daughter has times where she is anxious about the thought of dying and this has created a lot of anxiety this year. It seems that each year as she grows another issue pops up that we have to learn to deal with, whether it is. Last year my daughter and a large group of kids would go to the movies and hang out, I did not have the heart to say no because she had just had her ICD implanted and felt she had missed out on a lot of pre-teen activities. So I would sneak into the movie and hang out in the back…she never had a clue. Maybe my behavior was overprotective but it is what worked for me, while allowing her a certain amount of freedom from me and her condition. When I knew, if by telling yet another person of her condition, would embarrass her or cause her discomfort, I wouldn’t tell but I would make sure I or another family remember were around with or without her knowledge. Now that she is almost 14, her friends have my contact information, so if there is a problem they know to call 911 and then me. I do not go out everywhere with her now, the ICD has given her freedom, (her words) however, she has been implanted with the Medtronic Lead that was recalled in October for high fracture rates. Her device had to re-programmed to detect the slightest fracture. The problem is that it might give her inappropriate therapy by shocking her when she doesn’t need it. If it is not one thing it is another :) So now I’ve contacted Medtronic’s Representative for our area to have them provide a “donut” magnet device that could be used to turn off her ICD in the event of inappropriate therapy. I have been working with our EMS chief to make sure all 9 ambulances have the device and the EMS techs are trained to use it. I am still waiting on ours. So you can see that yet again I have had to do the rounds of explaining the possible defect of her lead and how it could shock her and what to look for if it is inappropriate, this could kill her….UGH! My son being 16 is not fazed at all (in denial) and is very sensitive if and when I bring the issue up, I tell everyone, just not in front of him. He friends’ parents know and I have gone over calling 911 etc. I will be purchasing a Phillips AED this summer, because we are going abroad for the summer and I want to make sure we have the AED and the Medtronic “donut”. Everyday I wakeup I know it could be much worst, my children are here with me and I do everything possible to help them deal with their condition and accepting it is the first step. I explained to my daughter that it is my job to make sure she was cared for, whatever that may be. It is hard on the parents but I could not imagine living with LQT, my daughter worries about having her own family and not having children “the natural way” because she doesn’t want to be responsible for passing this down to her own children. Such a delight she is and far too mature! Genell

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• By ncz727
• Posted March 5, 2008 at 1:15 pm
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Hi Genell, thanks for the quick response. Yes, all of the staff at my daughter's school are aware of her condition, and there are AEDs in the school. We also have an AED at home which we lug around with us everywhere. We also have a 504 Plan in place. My daughter had her first event at age 4 on the playground at school, when she collapsed unconscious while running. She "recovered" on her own and needed several stitches in her chin due to the fall. We all assumed she tripped and fell. Two years later she collapsed unconscious at a school dance while she was running around, and appeared to be having a seizure. The pediatrician said she was probably dehydrated. I felt there was more to it than that. A month later she collapsed unconscious a third time at a friend's house while running around the yard. Several tests were done and it was determined she had epilepsy and she was put on anti-seizure meds. The "seizures" stopped, but she continued to complain of her heart "feeling funny" when she would run, and feeling dizzy. At age 7 she saw her first cardiologist, who told us she had Long QT, and it was very apparent on her EKG, which previous doctors had missed. The genetic testing was done, and came out negative. We were told the test is only 70% accurate, and we now are waiting for new genes to be discovered so she can be re-tested. Last year we switched to a new electrophysiologist, who we are very happy with. So, this waiting is very difficult and seems endless. Meanwhile, I feel like I'm always asking the same questions. Our first electrophysiologist told us we needed to find "our comfort zone." How can a parent be comfortable about this situation? Our daughter is restricted as to activities - no sports. The only after school activities available at our school ARE sports. So we've begun signing her up for non-sporting activities through the town, and I was just wondering do I have to go through the entire story of her condition with every new person who comes in contact with her, because it seems nobody I talk to has ever heard of Long QT. Do I leave our AED with someone who isn't even trained to use it? What about at sleepovers, birthday parties, playing at friends' homes? Several parents have actually stopped inviting my daughter to things because they are afraid something will happen while she's at their home. I can see their side of it, but it hurts. She's only 9. What will high school be like at this rate? She is already asking that we not tell new people about her condition. But I don't feel comfortable dropping her off at after school activities and not saying ANYTHING! The doctors and nurses are good to talk to about the medical side to all of this, but it would be nice to know what other parents do in the day to day living with it. Especially when we don't even know which type of Long QT she has yet, and have to just hope the beta blocker continues to do its job. Thanks again for your input and advise!

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• By Genell
• Posted March 4, 2008 at 5:54 pm
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I would absolutely tell EVERYONE at her school starting with the principal of her condition and have an emergency plan put in place identifying who will call 911, who will administer CPR, who will use the AED and get training. Have someone at the school in charge of her safety. My daughter in 2002 at the age of 8 collapsed while running during PE, she was unresponsive and no one had a clue that she was in cardiac arrest, the children surrounded her asking if she was dead while she turned blue. The coach came up to her on the field and carried her to the nurses office, did not call 911, as my daughter (THANK GOD) recovered on her own, she was very weak, the school notified my neighbor because I was attending a meeting and had my cell phone turned off (I NEVER do this anymore) my neighbor sat with my daughter in the school nurses office until I could get there, my neighbor kept calling me until I turned my phone on an hour later, (my husband works overseas), I rushed to her school and when I saw her nearly 2 hours after the event I knew something serious was wrong and took her immediately to the emergency room. We were very lucky she recovered on her own, through an organization here I have met parents who children had similar events and did not survive. That is why I believe it is absolutely your right to ensure everyone in contact with your daughter is prepared for the possibility of an event and be prepared to save her life.
This was the beginning of a five year “back and forth” to the cardiologist. A new electrophysiologist came on staff in the cardiac clinic in our children’s hospital that looked at my daughters file and requested she have the EPI Study and LQT Genetic testing. This occurred last January 2007 her event took place in 2002. Her results from the EPI Study proved borderline LQT and she was placed on beta blockers as we waited for the outcome of her genetic test, it came back positive for Type II. The five years before her test she was taken out of PE and had to sit on the sideline watching or reading. No one truly understood the nature of LQT and it was a battle, our schools did not have AED’s (happy to say after much pressure our school district has AED’s in all public school buildings in our district as of this school year). This all changed when her results came back positive, she had an ICD implanted and I collected all the important information on LQT from the internet and provided copies to EVERYONE in contact with my daughter. I held a meeting with the school Principal, her counselors, all teachers, district nurse, school nurse, on the seriousness of an event and set up and emergency plan for each person as a link to who does what when including steps to be taken and phone numbers. She was also put on a special 504 plan which is a plan for a child with special needs in our district, outlining LQT. The school nurse inquired about EMS emergency response time to her school (7 mins) and set up a plan what to do. There were no AED’s at that time in the school. I made it very clear to what must be done in order to save her life, they were very accommodating. It took a lot of work for everyone but it was reassuring knowing that she was check on daily (without her knowledge) and that a plan was put in place. After her genetic results came back my family was tested and my older son 16 tested positive for LQT as did my husband. My son’s situation is similar to your daughters, he is on beta blocker therapy and does not have an ICD implanted, he has been asymptomatic but as we all understand LQT this means absolutely nothing in the case of an event. I did the same run down with the district nurse (knows me well by this point) and the school nurse, teachers etc. His high school has 3 AED’s with trained staff and we know who will administer therapy if needed, he is on the Debate Team and they take one with them on out of town trips, he is also on the School TV production team and travels out of state for events. It has been harder on my daughter because her quality of life has really been affected by LQT; she stopped all activities and was held back from trying out for the cheer/pom team for junior high. She loves to sing so I encouraged her to seek acting in our local children’s theater and has been cast members for two productions. This year I have let go a bit after speaking with other parents of LQT children and her doctor we decided to let her resume tennis and dance. As a parent with children having LQT I was so afraid, and still am, of the dreadful day something could go wrong. So I have prepared all who comes in contact with them knowing that I have provided the best information that I could so they could try to live life with quality.
As for questioning your doctor, how was your daughter diagnosed? Did she ever have an event? My children’s electrophysiologist has two great specialty nurses whom I have contact with via phone or email when a question or request comes up. I have had more success getting results from them than waiting every 6 months when we see the doctor to get my questions answers. The treatment for both my children with LQT could not be more different; from the same doctor, this assures me that he is truly treating the person and the condition on an individual bases. It does not hurt to have a second opinion; just having another doctor look over your daughters file could be reassuring. Good luck

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