Update on Dr. appt. for son

elliemom

elliemom

Cathlete
First, thank you to everyone for all your prayers and support!!! We drove from Philly area to Toledo Ohio to see the cardiac specialist for my 5 yr old son. It was worth every minute.

My son now has an official diagnosis of Neurocardiogenic Syncope. It's a form of dysautonomia that causes his heart to stop under stress. We now have all the info we need to make his life a little (lot) easier.

First of all there is a small implantable monitor (looks like a thumb drive for your PC) that is placed under the skin in the chest. NOT IN THE HEART. Yipee. The monitor works for 3 YEARS and the ifo is transmitted over the phone. This is so much better than pulling those awful sticky monitor leads off his poor skin for months!!!! It also gives WAY better readings since it is not subject to changing clothes, baths, etc etc!!!!!

ARE YOU STILL AWAKE????


If those readings of the monitor come back weekly, monthly showing increased heart irritability then we go right to a pacemaker. If it shows less irritabilty of the heart we have a wait and see. Which is a good thing too.

SOOOOOOOOOOOOOO, all in all it was a very successful trip. We have a few different options to choose from and some cool new devices (cooling vest) to try out to see if it helps make him more comfortable!!!!!!

Sorry so long, but I have been in a car for 4 days singing kids music and playing license plate games. I need a little adult conversation.
AND A LOT OF SLEEP!!!!

Thanks again for all your prayers and support
ellie
 
Ellie, that is so positive. Now you can move forward. Will you have to return to Ohio for these treatments or is there a doc here who can do them?

Does the monitor do anything for the actual problem or is it a tool to help you get a a handle on it?
 
Thanks for the update Ellie. Glad the kids (and you and DH) survived the car trip both ways, and that you got there and back safely.

Do you feel better now??? Get some rest now, woman!

Hugs to you and the boys!

Gayle
 
The monitor will tell us what his heart is doing at ALL times. That way if there is a lot of irritability we can treat it right away. We can't see heart irritability and a 5 yr old can't tell if he has a stomach ache, gas or chest pain!!!! This way if the monitor is giving us 24 hr/day info we can catch it before he has a fatal arrythmia.

On the other hand if the irritability is very minimal or non existent we haven't placed a permanent pacemaker in a 5 yr old. That stays with you for your whole life. Causing it's own set of potential problems. It also means I won't be giving nasty adult drugs to a developing brain and body of a 5 yr old!!!

We will be going back to Toledo, just not sure when yet!!!!

THANK YOU THANK YOU THANK YOU!!!!

ellie
 
Having the information you need to be able to make decisions is so helpful psychologically. You will be able to feel that you are doing something to actually make the situation better for your son, and that is so much better for everyone.
 
I am glad everything went well. It sounds like the specialist you found is a blessing for your family.

Wishing you and your family all the best, Ellie!!!
 
Thanks so much for keeping us all informed, Ellie...glad to hear everything went well, welcome home!!
 
Gosh Ellie, your positive attitude always amazes me! I'm so glad everything is working out OK for you & your family.
 
So glad to hear everything went well Ellie! And your attitude is so wonderful and upbeat. Your DS is lucky to have a mommy like you:)
 
Ellie, how fantastic!

Ellie, I am so excited to hear this wonderful news!!! :D Having raised two boys, I can only imagine how tough it's been to get accurate information from a 5-year-old fella about what's going on in his little body. What a fantastic solution this is and what a relief, to know that you can now assess his needs with good, real-time info and without asking him to "interpret" his physical sensations for you. I am SO glad for you!!!!

Hugs to your sweet little man and to you, honey. I hope you sleep really well tonight!!!!! :)
 
Gosh Ellie. I was wondering why I haven't seen you here for a while. Your son is lucky to have such a great mom who is doing everything she can for him. Hang in there. I'm glad that you found out what the problem was and there are some really great Dr's out there that can help. Sending you some good vibes and hugs.
 
Ellie,
Thanks for the update. What great news. Technology, got to love it. I will continue to keep you and your family in my prayers.

Jean
 
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