LQT2

• By TinaD123
• Reply 763598
• February 26, 2010 at 7:55 pm
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What kind of beta blocker is your daughter on and what MLG. How is she feeling on the beta blockers? Do you have LQT 2 also? I was just diagnosed on Jan 30 with LQT 2, I have three children all with prolonged QT intervals on EKG.The website that i like to visit is www.QTsyndrome.ch
I am still waiting for the results of the genetic test to come back for the three kids. One thing I have never heard anyone talk about is how horable it is to try to get blood from kids. I cryed the whole time with them. Good luck to you and your family. Feel free to write me any time.

• By TinaD123
• Reply 763619
• February 26, 2010 at 8:21 pm
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Another website for all the drugs to avoid
www.azcert.org/medical-pros/drug
lists/bycategory.cfm#

• By bortner
• Reply 764814
• February 27, 2010 at 5:56 pm
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hi all. my mother was diagnosed with LQT when i was 6 wks old after she went into cardiac arrest. i was tested 2 yrs later, and had a prolonged QT on the EKG. from that point forward, i've been on beta blockers. she immediately had an ICD implanted (this was in 1985). i grew up taking the meds and knowing i had limitations physically. i now have an 18 mnth old son, and he also has LQT type 2. the prospect of him having this is 1000 times scarier than it ever was for myself. i don't have any info for you, except for personal experience; but if i can answer any questions just let me know. good luck!

• By Baileigh
• Reply 793130 · In reply to 763598 by TinaD123
• March 18, 2010 at 4:47 pm
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Thanks so much Tina my daughter is now on Propranol she has been on several different kinds of beta blockers but she has had a really hard time with them either making her really sleepy or grouchy she just was not her normal self so the doctors decided to place her on Propranol which is normally only when they are babies however its the only one I think makes her some what feel normal. Which is a huge plus!! :)
I got some devastating news just the other day i went back for my sons genetic test results and found out he has LQT2 as well however it does not show on EKG.So now he will start on beta blocker as well.
I do not have LQT my husband carries the gene however his EKG does not reflect that he has it just like my son so UCSF is going to take a skin sample from my husband and make a prototype of his heart to see what is making him different I guess its a really unique situation. They placed him on beta blocker Toprol as well.
I will differently look up those websites also if you go to Sadsfoundation they have a lot of good info for you and they offer family camps for kids with heart problems.
How were you diagnosed?

• By Baileigh
• Reply 793148
• March 18, 2010 at 5:00 pm
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Hello Bortner, yes it is very scary I hope he does not have this condition. I just found out my 2nd child has the gene as well and I have been devastated.
I do actually want to know how you felt not being able to play sports?I worry about the day my kids want to play on sports team and I have to tell them they cant,my son is already a huge ball fan and has taught his self to play basket ball and dribble. I feel so bad he wont be able to play.
I hope all is well and I will pray for your son,when are you going to have him tested?

• By mommary
• Reply 794243 · In reply to 793148 by Baileigh
• March 19, 2010 at 10:52 am
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Hi Baileigh. My 11 year old son started taking beta blockers (nadolol) last year after a genetic test revealed LQT5. We had the test done after learning that his birthmother had been diagnosed with LQT and had an ICD implanted. My son has always been very active in sports, playing ice hockey, football and baseball. We were devastated over his diagnosis, thinking that it would definitely prevent him from continuing in the sports he loves. He has never had
any symptoms due to the LQT. We got 2 opinions from pediatric cardiologists at CHOP (Children's Hospital of Philadelphia). One doctor wanted him to discontinue the sports, the other (whose opinion we liked better) suggested that we purchase a defibrillator and start him on beta blockers. It's been a year since his diagnosis and he started the beta blockers, and thankfully nothing eventful has happened. My son discontinued playing football, but is still playing ice hockey and baseball. I'm not saying that this is the best course for everyone, but since my son has been playing ice hockey since he was 4 years old, the idea of completely changing his life was a hard decision. My husband and I are always at every sporting event my son participates in, with the defibrillator. I pray I never have to use it. The defibrillator goes to school with my son when he goes on field trips. I hope it doesn't sound like we are being irresponsible parents, but I want my son to enjoy his life. If and when he starts showing symptoms of LQT,
we will have to rethink our position on the allowing him to play sports. I am comfortable with our decision for now. I wish you much luck.