Monday morning the nurse called Jared & said the Dr. would like to give you Jaidan’s results…
The Dr. said his results came back positive for Long QT Syndrome. (LQTS) Boo. 🙁 My heart sank a little. Okay, so we knew there was a chance that he did have it, but when you finally hear that he does it’s just a different feeling that you didn’t know before. It really sucked that it was Monday morning and that I was at work so I couldn’t even give my little boy a hug.
Long QT syndrome is ‘a glitch in the electrical recharging phase of the heart’.
Latigo History of LQTS… Jared first passed out when he was 11 years old, a year later he had a seizure. At this time, his sister Lesha, had been treated for epilepsy for 8 years. The dr’s at Cook Children’s tested him and ruled other things out. His cardiologist ended up being Dr. Gillette & was the only one in the area at this time that new about LQTS. They did an EKG to test for it and found it. After revealing their family history of unexplained deaths (including Jareds aunt at the age of 20), they were able to diagnose his sister, Lesha, with LQTS also. And the same month he turned 13, Jared and his 23 year old sister got pacemakers. The discovery of this disease wasn’t until 1995 and this all happened in 1997. Since then, Lesha has had 3 kids & passed it on to 2 of them.
Each of our kids has a 50 % chance of having this mutated gene.
What are the ‘symptoms’??
When the LQTS heart “spins electrically out of control” in its trademark cardiac arrhythmia called torsade de pointes, sudden, temporary, loss of consciousness (syncope) is the most common event. These events usually occur without warning and are often triggered by exertion or auditory stimuli.
In patients who experience syncope only, the torsade de pointes rhythm spontaneously returns to normal, usually in less than a minute, and the patient quickly regains consciousness, without disorientation or confusion. Some patients may experience slight fatigue afterwards; others feel fine and resume their regular activities. If this bad LQTS rhythm persists longer, patients may then manifest a generalized seizure. In fact, some patients with LQTS have been misdiagnosed initially with epilepsy and even treated with anti-epileptic medication. In both the syncope and seizure presentations, the long QT heart eventually caught itself, reverted back to normal sinus rhythm, and the “spell” is over. On the other hand, in a minority of patients, the torsade rhythm persists longer still and degenerates further into the heart rhythm known as ventricular fibrillation, which rarely reverts back to a normal rhythm without medical intervention. If the ventricular fibrillation is not converted, usually by electrical defibrillation, the outcome is sudden cardiac death or sudden cardiac arrest.
If all this sounds foreign to you, it’s just saying the symptoms are either -passing out -seizures or -death.
There are 3 TYPES of LQTS. Our family is classified as TYPE 2. Within that TYPE is CLASS 1 or 2. The Dr. also told Jared that since there is more research they are moving his family to CLASS 1 instead of CLASS 2. CLASS 1 just means that they are more prone to have problems than CLASS 2. I guess they compared the gene to other families genes and ours have more problems.
Another interesting thing is that they don’t want him on medication yet. (yay!) And you all know how I am about medicines anyway, when that time comes it will be sooo hard for me!! They are also weaning Jaidan’s cousins off of their medication. Kaitlyn is 8 (I think) and Khloe is 2. The cardiologist said because of Jaidan’s test, he is more confident that it doesn’t affect infants/kids in our situation. Umm good. But it also shows me how much they still DON”T KNOW about this and it seems to change all the time.
What I’m thinking… I’m VERY glad that I haven’t gotten Jaidan any of his vaccinations yet. I have been going back and forth between selective/delayed or none and now I’m confident in my decision that we will not be getting any. First of all, THIS is the list of medications that are NOT safe for LQTS persons as they can trigger the symptoms. There are about 145 different medications on this list ranging from decongestants, antibiotics, antihistamine, anti-depressants, and everything in between! (And new medications are still being added) There is NO WAY I will be injecting anything into him! There is so much unknown still that I will NOT let Jaidan be the guinea pig. I would rather his body fight off anything natural that he may catch! His 9 month appt is next Tuesday and his pediatrician better be okay with this! He has been bugging me since I gave birth to get him vaccinated & I’m just about done with all that. I don’t even trust tylenol… he has never had it & never needed it. He doesn’t need all that crap in his system!
I didn’t think I could get any more protective over him, but it looks like I have.
The nurse said that THIS is a good site for information on LQTS. And it’s where I got my quotes from.
I wanted to add that I had a friend read this and respond to me about my stand on vaccinations… she said “God gave you that conviction before you knew you needed it”. It goes back to my post I had a couple weeks ago about God preparing me today for what I will need tomorrow. That is sooo powerful & I’m so thankful she made me realize that!
I also want to thank everyone for the prayers we have received! Our God is an awesome God.