Daily Deals & Coupons at Scrapbook.com. Click Here!
Login • Sign Up • Customer Service • My Account • Shopping Bag  
Username Post: Update: on Oscar and boo boo bear        (Topic#328662)
Oscar T. Grouch 
SJ Queen of the Crop
Posts: 27962
Oscar T. Grouch
Reg: 02-16-05

11-02-13 02:17 AM - Post#4084592    

It turned out my sudden cardiac arrests were caused by an electrical condition of the heart called Long QT. its a defect that alters the needed electrical pulses to keep a heart beating.

I received my diagnosis of genetic type 5 in June.

Then the kids were tested.

This week we received the news that Alexis (boo boo bear here on SJ) has my exact genetic mutation and has long qt.
She turned 13 in July and has been through so much this past 16 months.

Austins results came back negative

As a family we are still trying to regain some semblance of normal after my issues. This is just devastating on top of my ongoing issues.

She is so scared. :(. My mommy heart hurts. I cannot promise her it won't happen to her.

You are all part of our family. Many of you have seen her grow up.

 
carpe scrapum 
SJ Divalicious
Posts: 15543
carpe scrapum
Reg: 12-27-05

11-02-13 06:14 AM - Post#4084596    
    In response to Oscar T. Grouch

I'm sorry, praying that knowing this will help doctors prevent problems for her. Poor sweetie, that's a lot for a young girl.

 
3 Little Ladies 
SJ Deity
Posts: 71776
3 Little Ladies
Reg: 03-10-05

11-02-13 06:52 AM - Post#4084598    
    In response to carpe scrapum

I know you were hoping for both of your children to be negative, I'm sorry. Is there anything they can do for her to prevent an attack?

 
boysmom 
Scrapjazz Contributor
Posts: 7333
boysmom
Reg: 09-28-05

11-02-13 07:52 AM - Post#4084602    
    In response to 3 Little Ladies

I know it's not what you wanted to hear, but at least she knows. Hopefully the Doctors will be able to use this knowledge to keep her healthy.

 
kaleidoscope 
SJ Queen of the Crop
Posts: 26693
kaleidoscope
Reg: 02-13-09

11-02-13 08:18 AM - Post#4084604    
    In response to boysmom

I'm sorry.

But I will ditto what Louise said.

 
buttonscrapper 
SJ Divalicious
Posts: 18389
buttonscrapper
Reg: 03-15-03

11-02-13 09:05 AM - Post#4084610    
    In response to kaleidoscope

Hopefully knowing she has this will curb any medical emergencies for her...

 
Nora 
Blue Crew Member
Posts: 53122
Nora
Reg: 01-22-03

11-02-13 10:12 AM - Post#4084628    
    In response to buttonscrapper

Wow. I am so sorry. I know as a mother that you just want to be able to take it all away and with this, you have no control. Is there any preventative things they can do now that they know? Will she be checked on a regular basis? If so, it might be a blessing that you found out. Big hugs.

 
scrapanda 
SJ Diva
Posts: 7145
scrapanda
Reg: 03-04-07

11-02-13 10:47 AM - Post#4084636    
    In response to Nora

So sorry it isn't the news we were all hoping for for her. But like the others said maybe better to know so that an attack can be prevented. hugs.

 
RedSquirrel 
SJ Queen of the Crop
Posts: 30880
RedSquirrel
Reg: 06-13-08

11-02-13 11:52 AM - Post#4084646    
    In response to scrapanda

That's hard to hear. to you both.

 
scaredycat 
SJ Aficionada
Posts: 775
scaredycat
Reg: 09-04-09

11-02-13 12:39 PM - Post#4084654    
    In response to RedSquirrel

That is such tough news. I am so sorry

 
qaustriangirl 
SJ Divalicious
Posts: 10925
qaustriangirl
Reg: 05-27-05

11-02-13 12:58 PM - Post#4084658    
    In response to scaredycat

I am so sorry, Sherri! I hope that knowing that she has it will help to prevent an attack like you had. It must be so hard for all of you!

 
Oscar T. Grouch 
SJ Queen of the Crop
Posts: 27962
Oscar T. Grouch
Reg: 02-16-05

11-02-13 04:30 PM - Post#4084664    
    In response to qaustriangirl

Thanks everyone

She has been started on beta blockers. They are first line of defense.

We need to avoid any medications that further prolong the long qt.

Avoid caffeine

Long qt type 5 is rare and little is known directly about it. It's closely related to type 1. Type 1 triggers are usually exercise related and emotional.

We need to get an AED (automated external defibrillator) for her to have access to.

Follow up, regularly.

Undiagnosed long qt is generally fatal like mine was if triggered. We hope we pray that she will never have to experience what I did. Proactive treatment is key.

But as a Mommy I'm just hurting. As a teen she is freaked. It's hard enough adjusting to the teen years let alone have this diagnosis thrown at her.

Thank you.

 
3 Little Ladies 
SJ Deity
Posts: 71776
3 Little Ladies
Reg: 03-10-05

11-02-13 05:35 PM - Post#4084670    
    In response to Oscar T. Grouch

I guess you can take some comfort in knowing and being prepared. Hopefully she'll never have to go through what you did.

 
Oscar T. Grouch 
SJ Queen of the Crop
Posts: 27962
Oscar T. Grouch
Reg: 02-16-05

11-03-13 06:19 AM - Post#4084690    
    In response to 3 Little Ladies

I'm not getting any comfort in her having it.

I haven't adjusted yet to me having it yet.

One day at a time. One breath at a time.

 
scrappinmamma 
SJ Grand Poobah
Posts: 2472
scrappinmamma
Reg: 01-07-07

11-03-13 03:11 PM - Post#4084754    
    In response to Oscar T. Grouch

Sherri,

I am so sorry. As a mom it is so frightening to hear that your child has a condition that you cannot fix or change.

I hope that between the doctors and research; new medications and techniques can help both of you!

 
boysmom 
Scrapjazz Contributor
Posts: 7333
boysmom
Reg: 09-28-05

11-04-13 08:38 AM - Post#4084820    
    In response to scrappinmamma

Sherri - I know what it's like when your kids are diagnosed with something incurable. When my kids were diagnosed with Celiac disease it was so hard just hearing the word disease associated with my precious kids. Of course, Celiac isn't life threatening and it's treated with diet, so life has adjusted and everything is now fine. What your daughter is more scary, but as a Mom hearing your child has anything is just so hard. I get it.
At least you have a medical plan to keep her safe which is the most important thing. The feeling you have inside will go away over time and you will just focus on being the best mom you can be and keeping her safe and healthy.

 
gingersfavorite 
SJ Queen of the Crop
Posts: 46242
gingersfavorite
Reg: 08-13-07

11-04-13 08:53 PM - Post#4084916    
    In response to boysmom

so sorry

 
booboobear 
SJ Devotee
Posts: 235
booboobear
Reg: 02-17-06

11-07-13 02:03 PM - Post#4085324    
    In response to gingersfavorite

Thank you for all the kind thoughts

 
rottiefan 
SJ Divalicious
Posts: 17744
rottiefan
Reg: 11-03-06

11-07-13 05:17 PM - Post#4085332    
    In response to booboobear

Best thoughts for you guys!

 
Icon Legend Permissions Topic Options
Report Post

Quote Post

Quick Reply

Print Topic

Email Topic

2709 Views
Recent Jazzers
Welcome them to our community!
Recent Topics
Recent Hot Topics
Calendar
April 2014
SMTWTFS
 12345
6789101112
13141516171819
20212223242526
27282930 


Scrapjazz.com on Twitter  Scrapjazz.com on Facebook   
   © 2014 Scrapjazz.com
Execution time: 0.257 seconds.   Total Queries: 21   Zlib Compression is on.
All times are (GMT -0600) Central. Current time is 10:21 PM
Top