Yahoo! I'm getting the referrals for my kiddies echoes!

[Chrisandgary]

I am so excited - I went to the pediatrician today because my 5 year old son Zachary had a tick embedded in his back YUCK. Anyway I brought up the subject of BAVD again to him and said I am compiling research that warrants my 4 kids to be tested and he said OKAY! He will call the insurance company to obtain the referrals. I am doing the happy dance!! He asked if I would like it to be done at Vassar Bros. Hospital and I said that was fine. Of course after leaving I realized I should find a pediatric specialist. Anyone have any suggestions - Dutchess or Westchester County NY area?
Thank you all for keeping this topic alive!
Christine
(I had gotten the tick out of my sons skin - except the head and he has a huge red angry looking lump now - which is what prompted my docs visit. Of course we took the tick with us - cant tell if it is deer or wood because it is so engorged which means it has been there for some time - now we have to wait and see if he develops Lymes disease. And I wonder why I have panic attacks.)

 

[aussigal]

Excellent news...
and hope he gets no germies from that nasty tick...

What a coincidence cos i found one hanging onto Steve's ear after theyd been bush last weekend yet I had never seen one before then ever!

Oh well..

So thats great news that you have referrals for the 4 kids...you will feel so much better once you know where they all stand in this...I know I do and it has barely worried the boys at all being tested...they kinda got bored and wondered what all the fuss was about actually...

Didnt even want the day off school to see the geneticist ...which they didnt see that day cos we decided it would be easier if just I was there, which was true, we covered alot of ground that day.

All the best...i shall be eagerly awaiting their results as I know you are counting down the minutes til their scans...make sure you go in with them...
It was kinda dark and scary for steve my youngest 10, then he got bored
and he had the full 45 minute scan ,,,he has the fused type of bicuspid valve Matt 15 has the true bi-leaflet version ...
I thought that was fascinating...and silly me doesnt know what sort I have ...gotta ask Dr.JJ.

 

[hensylee]

I have been following your thread about the children. It is really encouraging that you stood your ground and kept digging. And then, lo and behold, your dr listened. Please keep us posted. Our little ones are so precious.

Sorry about the tick. Those bites last for awhile and are itchy. I am sure you are watching it carefully and looking for any signs that you don't like.

 

[Marguerite53]

Good for you!!

Good for you!!

That is excellent news. Little by little we will educate these doctors and health insurance companies, won't we??

I just went on Wednesday for my own echo. The tech was a man I'd seen before. This time we really had a great conversation. I was bemoaning the fact that I wasn't able to screen my kids and he offered to have them "swing by" and he'd have a quick look. Then in the next breath, he said, no , whoops, these aren't my machines, are they. Oh wish I could. It could be so quick just to screen them. So then I began to wonder how many techs would be willing to volunteer if we could just organize (across the nation ???) a travelling echo machine! Maybe we could get Lance Armstrong to ante up for one if we included dogs, too!! Or maybe Tom Cruise would share! (well, we could talk Tom into an echo machine since he wants to know everything about this child of his!!)

Well, I'm being silly. Maybe your euphoria is contagious. Christine, I'm so glad you got some help. Now we all are hoping that there is only one anomolie in the family and you can all dance "whole" heartedly into the sunset!

Good luck. I know you'll keep us posted. We apprecitate your tenaciousness!

Marguerite

 

[Lynlw]

pediatric cardiology centers

pediatric cardiology centers

yes I would definately go to a center that speciallizes in pediatric cardiology.or for adults one that specializes in Aduclts w/ CHD here is a link to quite a few centers, I'm not sure which one is closest to you http://tchin.org/cardiology/index.htm#CS02 I'm glad you will be getting the referral, I hope insurance doesn't cause any problems. heck I think EVERY child should be screened for CHDs, sure would save alot of lives. Lyn www.caringbridge.org/nj/justinw

 

[aussigal]

FREE echos and EKG's in the UK

FREE echos and EKG's in the UK

apparently if you are a first degree relative of someone under 30 who dies unexpectedly in the UK , you are entitled to a free EKG and Echo under the NHS...

just another lil piece of semi-useless info I tripped over...lol

 

[Rebecca]

In Atlanta Georgia students can get scan for $58. This company takes their machines to some of the schools on the weekend and do mini echoes. Their machines were not being used on weekends so in the summer they have made money by taking them to some of schools.

Smart Heart Scan:
http://smartheartscans.com/home.asp


More companys should take their machines to schools on some weekend to do mini scans.

 

[Lynlw]

Rebecca, I've seen a link to that program before and think it is such a wonderful idea, I thought it was sad that it is a program in Atlanta and if Jason Collier had one, he might still be here w/ his wife and baby, Lyn

 

[Marguerite53]

Rebecca. Thank you for posting that. Earlier this year I suspect it was you who mentioned it to the forum in another thread.

Very interesting reading. Somewhat sensationalizing, I suspect, for business purposes, but such a truly important idea. It sounds as if the $58 echo is only 8 minutes long and strategically directed to look for cardiomyopathy. I wonder how well they can visualize the valves in that time.

Thank you again for including this link. Those of us with children still in school might be wise to follow up with our local school districts to see if we can institute a change, or at least an awakening!

Marguerite

PS. I copied your post and put it into Momshell's thread on Thick Heart. Thought it would be useful there too.

 

[Natanni]

Way to go!!

Way to go!!

Way to go getting those ref. Chris!

I am having a TERRIBLE time getting ready to bring my daughter in After just watching my husband go through all this, I am just dragging my feet getting my daughter evaluated. I am so afraid of what they are going to find. I keep using this same excuse, "Let so more time go after her Dad's surgery so her memories will fade...." My husband was 19 when he watched his Dad go through a heart transplant. He remembers so much, and our daughter saw sooooo much of her Dads post op recovery. But he was so great with her, going for that extra walk with her when she came to see him, etc. She is 9 years old, and has been a figure skater since she was 4, and is progressing to a more difficult level, so I know she needs to have that murmur checked.

We don't have a ref for my son, as he has no murmur at all, but after reading the link provided earlier by Aussie (thank you!!) bicupsid valve disease website, I learned that the lack of a murmur does not indicate you are free of BAVD. Interesting the Marfs syndrome/bicuspid link! Somehow, I don't think they fall into that catagory as hubby and the kids are all short and downright stocky

I didn't mean to hyjack the thread....This has been weighing in heavily on my mind that past 2 weeks. Thanks for the update, and keep us posted on what you find out!!