Wolfe parkinson white !!!

babywishes1 · Jan 16th, 2010, 06:28 AM

My daughter has been diagnosed with this heart condition and i'm looking for a buddy whos child has the same problem.

Aidedhoney · Jan 16th, 2010, 10:41 AM

Hello,

My son ALex was born with a heart defect.
While its not Wolfe parkinson white he has i understand the implications of having a child with a heart defect.
He is post op for truncus arteriosus.

x

babywishes1 · Jan 16th, 2010, 13:06 PM

Sorry to hear about your little boy , It's hard isn't ? I'm at the stage where i feel like i'm to blame .

Angel is 8yrs old and we have been lucky to find it as it's related to sudden death but it's safer now she's on beta blockers.

When is you little one due for the operation ?

Aidedhoney · Jan 16th, 2010, 18:00 PM

Honey in no way are you to blame, these things happen, nothing we could have done would have stopped this happening.
I can understand the emotions that you and your family will be feeling its a bit like been on a roller coaster, so many ups and downs.
Its very hard but with the correct support you can get through this.

I did google WPW must be very scary for you and your family? How is Angel coping? Is she aware that she has a problem? Have they said if they will operate?

Alex has had his first surgery, he had his first op when he was 2 weeks old, he will need at least another 2 perhaps even 3 over the next 8 to 20 years.
The link at the bottom of my sig explains about Alex and his surgery.

Have you been put in touch with any support groups?

Jx

babywishes1 · Jan 17th, 2010, 10:21 AM

She's not really aware and this is how I like it! , She needs her childhood so I'm trying to carry on but I feel like I'm falling apart inside.

I dont have anyone to turn to really cos my family dont understand how I feel and I'm seperated from her Dad but he takes everything day by day anyway.

Did the hospital put you in touch with support groups?

Aidedhoney · Jan 18th, 2010, 04:23 AM

Families eh, they never seem to really understand, my mum would have Alex wrapped in cotton wool and his dad would have him bungee jumping. It like 2 different extremes.

I agree that its important to let Angel have her childhood, it would be very easy to confuse her with too much information.

We are under the care of Yorkhill Childrens Hospital and ermmm no they didnt put us in touch with anyone. We do have a cardiac Liason nurse that we can get in touch with if we have any questions. Which is a bit of a poor show really.
My local GPs are good but because we stay rural they seem to be a bit scared of Alex and any questions i have are always left unanswered.

I am in the process of trying to find a support group, i am led to believe that there is one aimed at children (will Pm you the details)

babywishes1 · Jan 19th, 2010, 03:57 AM

yesterday I have received a letter from mthe hospital to say she now has supraventricular tachycardia (SVT ) as well and this is what i was worried about as she has the extra pass way and makes the WPW worst as risk of heart attack or sudden death.

I have woken 3 times in the night dreaming that i couldnt finkd her think it just my was of coping with the situation .

Men hey!!!! bungee jumping .... I know my ex lets the kids do what they want .

We are at Birmingham and they are good and fast we have rural doctors and when i told them what she had he had to look it up in a book whils I was sat there !!!! good eh!!!

Aidedhoney · Jan 20th, 2010, 15:50 PM

Wow scary stuff, must be very scary, have they said how they will treat this?

The support group i have found is www.youngheart.info as far as i am aware they have branches nationwide.

Aidedhoney · Jan 20th, 2010, 15:56 PM

Heartchild.info is also another good group for advice and easy explanations

Aidedhoney · Jan 20th, 2010, 15:58 PM

The rural doctors is a bit crap, its very frustrating that as a parent i know more about my sons heart defect than a so called medical person.
I get fed up of going over and over all the info, i try and see the same doctor all the time to save me doing this but its not always possible x

Jan 16th, 2010, 06:28 AM	#1
babywishes1 Trying to conceive (TTC) Active BnB Member Join Date: Dec 2009 Location: Stoke on trent Posts: 62	Wolfe parkinson white !!! My daughter has been diagnosed with this heart condition and i'm looking for a buddy whos child has the same problem.

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Jan 16th, 2010, 10:41 AM	#2
Aidedhoney Mum (Mom) Chat Happy BnB Member Join Date: Mar 2009 Location: Scotland Posts: 2,444	Hello, My son ALex was born with a heart defect. While its not Wolfe parkinson white he has i understand the implications of having a child with a heart defect. He is post op for truncus arteriosus. x

Status: Offline

Jan 16th, 2010, 13:06 PM	#3
babywishes1 Trying to conceive (TTC) Active BnB Member Join Date: Dec 2009 Location: Stoke on trent Posts: 62	Sorry to hear about your little boy , It's hard isn't ? I'm at the stage where i feel like i'm to blame . Angel is 8yrs old and we have been lucky to find it as it's related to sudden death but it's safer now she's on beta blockers. When is you little one due for the operation ?

Status: Offline

Jan 16th, 2010, 18:00 PM	#4
Aidedhoney Mum (Mom) Chat Happy BnB Member Join Date: Mar 2009 Location: Scotland Posts: 2,444	Honey in no way are you to blame, these things happen, nothing we could have done would have stopped this happening. I can understand the emotions that you and your family will be feeling its a bit like been on a roller coaster, so many ups and downs. Its very hard but with the correct support you can get through this. I did google WPW must be very scary for you and your family? How is Angel coping? Is she aware that she has a problem? Have they said if they will operate? Alex has had his first surgery, he had his first op when he was 2 weeks old, he will need at least another 2 perhaps even 3 over the next 8 to 20 years. The link at the bottom of my sig explains about Alex and his surgery. Have you been put in touch with any support groups? Jx

Status: Offline

Jan 17th, 2010, 10:21 AM	#5
babywishes1 Trying to conceive (TTC) Active BnB Member Join Date: Dec 2009 Location: Stoke on trent Posts: 62	She's not really aware and this is how I like it! , She needs her childhood so I'm trying to carry on but I feel like I'm falling apart inside. I dont have anyone to turn to really cos my family dont understand how I feel and I'm seperated from her Dad but he takes everything day by day anyway. Did the hospital put you in touch with support groups?

Status: Offline

Jan 18th, 2010, 04:23 AM	#6
Aidedhoney Mum (Mom) Chat Happy BnB Member Join Date: Mar 2009 Location: Scotland Posts: 2,444	Families eh, they never seem to really understand, my mum would have Alex wrapped in cotton wool and his dad would have him bungee jumping. It like 2 different extremes. I agree that its important to let Angel have her childhood, it would be very easy to confuse her with too much information. We are under the care of Yorkhill Childrens Hospital and ermmm no they didnt put us in touch with anyone. We do have a cardiac Liason nurse that we can get in touch with if we have any questions. Which is a bit of a poor show really. My local GPs are good but because we stay rural they seem to be a bit scared of Alex and any questions i have are always left unanswered. I am in the process of trying to find a support group, i am led to believe that there is one aimed at children (will Pm you the details)

Status: Offline

Jan 19th, 2010, 03:57 AM	#7
babywishes1 Trying to conceive (TTC) Active BnB Member Join Date: Dec 2009 Location: Stoke on trent Posts: 62	yesterday I have received a letter from mthe hospital to say she now has supraventricular tachycardia (SVT ) as well and this is what i was worried about as she has the extra pass way and makes the WPW worst as risk of heart attack or sudden death. I have woken 3 times in the night dreaming that i couldnt finkd her think it just my was of coping with the situation . Men hey!!!! bungee jumping .... I know my ex lets the kids do what they want . We are at Birmingham and they are good and fast we have rural doctors and when i told them what she had he had to look it up in a book whils I was sat there !!!! good eh!!!

Status: Offline

Jan 20th, 2010, 15:50 PM	#8
Aidedhoney Mum (Mom) Chat Happy BnB Member Join Date: Mar 2009 Location: Scotland Posts: 2,444	Wow scary stuff, must be very scary, have they said how they will treat this? The support group i have found is www.youngheart.info as far as i am aware they have branches nationwide.

Status: Offline

Jan 20th, 2010, 15:56 PM	#9
Aidedhoney Mum (Mom) Chat Happy BnB Member Join Date: Mar 2009 Location: Scotland Posts: 2,444	Heartchild.info is also another good group for advice and easy explanations

Status: Offline

Jan 20th, 2010, 15:58 PM	#10
Aidedhoney Mum (Mom) Chat Happy BnB Member Join Date: Mar 2009 Location: Scotland Posts: 2,444	The rural doctors is a bit crap, its very frustrating that as a parent i know more about my sons heart defect than a so called medical person. I get fed up of going over and over all the info, i try and see the same doctor all the time to save me doing this but its not always possible x

Status: Offline

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