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Post by cfvickers on Mar 8, 2011 0:18:02 GMT -5
I took her Friday to an appointment with her cardiologist. She has Wolf Parkinson White Syndrome. A lot of kids go through this and it usually doesn't create much of a problem. But it has begun to rear its head in the last couple months. I am the only one who has seen her have a confirmed attack and I have never felt more helpless and afraid in my life.
The condition is basically when the child or person has an extra nerve or "pathway" sending signals from the brain that tell the heart to beat. My understanding is that we should have one pathway going to the top of the heart, she has one at top and bottom. When she gets startled or overly excited it can make her heart rate pretty much double. If it gets much over 300 it could cause her heart to start quivering (cardiac arrest), My count was 270 when it happened here and she could not breath. It was like she was hyperventilating.
I conveyed this to the dr. and my 4 year old is now on meds to keep her heart regulated, actually the exact same thing I take for my blood pressure. This has come down on me pretty hard. I knew about the condition but when it doesn't require meds you try to think "ah, she'll be alright". But the gravity of the condition has really hit me pretty hard this weekend. They say eventually they will go in and deaden the nerve or disconnect it or something, but not until she is a few years older or unless they have to do it before I guess due the the size of her arteries as it is a catheter (balloon) surgery.
So would you guys please pray for her health. She could use them. I could use a couple myself. I cannot put into words the emotions this has brought on me. I guess to some it may seem like no big deal, but to them I either say "it isn't your little girl" or "I am very sorry you were given a heavier burden" Because I understand that there are worse things a child can face.. But I don't want to be made strong enough to deal with worse.
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Deleted
Deleted Member
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Post by Deleted on Mar 8, 2011 0:45:49 GMT -5
Our prayers are with her and your family. Zen
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Post by ET on Mar 8, 2011 6:41:51 GMT -5
Prayers offered.
Ed
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alex
8 Pointer
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Post by alex on Mar 8, 2011 7:24:37 GMT -5
my families prayers are offered
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Post by deadon on Mar 8, 2011 8:13:00 GMT -5
Praying for your little girl, Rusty
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blackpowder
Spike
T/C ENCORE ..SAVAGE FCSS.243
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Post by blackpowder on Mar 8, 2011 8:18:11 GMT -5
it's your child so it is normal for you to feel like that and yes if a child is not well it is a BIG Deal . hope for the best ..Praying for your little girl ...
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Post by adk on Mar 8, 2011 9:54:42 GMT -5
I understand your pain CF. We went thru hell for about six years beginning when my daughter was 2 years old. I have believed ever since that God does listen to our prayers. Prayers sent from my family.
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Post by craigf on Mar 8, 2011 11:27:19 GMT -5
I am praying for her, you, and your family. Our God is able and good to take care of his children!
Craig
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Post by cfvickers on Mar 8, 2011 16:09:44 GMT -5
Very much appreciated guys. I would have posted it earlier but couldn't bring myself to type it or read it. Blackpowder, You seem like you look at kids like I do. I cannot stand to see any child sick or in pain, much less my own. And I am certain that god listens to prayers. He doesn't always give us the answer we want, but he always answer.
On a good note she is tolerating the meds very well, and is acting, at the moment and since yesterday at least, like nothing is wrong. I can only keep praying that it stays that way.
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Post by 12ptdroptine on Mar 8, 2011 21:37:55 GMT -5
prayers sent
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Post by mdgroundhogger on Mar 8, 2011 22:02:17 GMT -5
Sorry to hear about your little girl. I have a little girl also and I can understand the worries. God always has a plan. My prayers go out to you. Try your best to remain strong for her, I know sometimes that is easier said than done but remember your in our thoughts and maybe that will help give you strength.
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Post by stubblejumper on Mar 9, 2011 0:38:32 GMT -5
Our girl was born with a hole in the septum of her heart and was loosing weight etc as she was too weak to breast feed properly and was very lethargic. Nothing else in the world matters when something like that happens, you are justified in your reaction.
We will pray for you and your girl. Our girl is now a healthy 5 year old and she would like to pray for her as well.
Ed
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Post by cfvickers on Mar 9, 2011 1:44:55 GMT -5
You just put a load of tears in my eyes Stubblejumper. Tell your daughter I said thank you so very much. You are obviously raising her right. Abby was also born with a hole in her heart along with the WPW. The hole closed up in the first two years. But this problem is just not one that could ever go away on its own. I just thank god for modern medicine. Without it a child with this type of issue would likely have not lived past 20-25 and there would be little hope even if it were diagnosed. But we have hope and odds on our side due to the blessing of a great cardiologist and modern capability. It is hard to see immediately how much we have to be thankful for when we get bad news like this. But I do see it now. You guys are a blessing as well. I am so glad I ran across this site and stayed long enough to take a look around it. There is no better group of people on a forum that I have crossed.
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Post by cfvickers on Mar 27, 2011 13:03:19 GMT -5
Update: We have been on atenolol for about 2 weeks and she seems to be doing far better. It has also helped her to control her temper a little better as well, which I can completely relate too. It is my understanding that beta blockers will control the flow of adrenaline in tense situations (per my pharmacist). It hasn't had any negative side effects that we can see, and her mother has actually remembered to give her the meds! That in its self is a blessing. I take the same thing every day so I just break one in half when she is here and give it to her when I take it. I have checked her heart rate when she was upset or throwing a fit and, where in the past it has been upwards of 180 on a normal fit, it is down now around 120-130. Its a 4 year old so occasional fits are to be expected but now they are far more occasional than normal, that is excellent. While this may have been gods will with or without all of the prayers that have been offered by you guys and family and friends, I am very grateful to all of you for the prayers offered and would still very much appreciate your prayers for her continued well being. I have dealt with the personal issues I had with this and turned them over to the Lord and am content that it is no longer something I need to worry myself about, I just need to continue to be vigilant and not overlook symptoms or second guess myself. I have educated myself on this condition and know what to watch for. Again Thanks to all.
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Post by tar12 on Apr 8, 2011 23:59:10 GMT -5
I wish your child the best....it saddens me to no end to watch a child suffer. Our prayers are with you...
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Post by ozark on Apr 11, 2011 13:38:23 GMT -5
Believe me, I understand the pain and the helplessness you are going through. Worry, grief and feeling sad helps nothing but it is something that we must endure.I hope it is Gods will that your daughter continue to improve and that the family can enjoy life to its fullest. I can't think, talk about or write about my loss without the tear glands flooding and that choking begin. We can be blameless but suffer deeply if we love. But we must love to be happy and in many cases suffer from a loss. May God choose to make your family happy and free of worry down the road a piece. Ben
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Post by deadon on Apr 11, 2011 13:50:30 GMT -5
Still praying for you and yours CF, Rusty
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Post by cfvickers on Apr 19, 2011 1:59:45 GMT -5
Thank you all. Ozark, I can't think of a more appropriate prayer or way of saying it. I still pray for you and yours as well.
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Post by 161 on May 20, 2011 21:23:35 GMT -5
Sorry I didn't see this sooner. Prayers offered.
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