https://www.ohbaby.co.nz/forum/ Copyright (c) 2006-2013 Web Wiz Forums - All Rights Reserved. Tue, 05 May 2026 23:43:31 +0000 Sun, 16 Dec 2007 14:58:38 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 12.05 360 https://www.ohbaby.co.nz/forum/RSS_post_feed.asp?TID=12978 https://www.ohbaby.co.nz/forum/forum_images/web_wiz_forums.png https://www.ohbaby.co.nz/forum/ https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=263052&title=heart-kids-anyone-else#263052 Author: shaz
Subject: 12978
Posted: 16 December 2007 at 2:58pm

Natasha has Juvenile Dermatomyositis (JDMS) which in short means her immune system went haywire and now attacks her muscles instead of doing it's normal job. It was really scary at the beginning as she was only the 13th person in NZ to have it and the internet had allot of miss information. The scariest thing I read was the survival rate, which was really low once but now with new meds it is extremely rare for kids to die from it. There is more/better info available now and we are so used to her having it, it sounds strange but the longer you live with something the less it bothers you. It only gets to me when something happens that upsets Tasha because of the JDMS like being teased because of the side affects of her medication etc.
Glad to hear that the heart kids xmas party was fun. I really enjoy outings etc with our support group as you know all the kids understand each other and no one ever gets teased.
Tasha's web page]]> Sun, 16 Dec 2007 14:58:38 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=263052&title=heart-kids-anyone-else#263052 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=263050&title=heart-kids-anyone-else#263050 Author: Peace
Subject: 12978
Posted: 16 December 2007 at 2:55pm

It's the flaps and valve shape that are malformed on Olivia's Pulmonary Valve which make the blood swirl funny. I remember Jeremy whats-his-name (the paediatrician-heart specialist and ultrasound scanner) saying that Olivia's heart does work harder but not by much. She loses no blood through the posterior hole. ]]> Sun, 16 Dec 2007 14:55:06 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=263050&title=heart-kids-anyone-else#263050 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262844&title=heart-kids-anyone-else#262844 Author: mum2paris
Subject: 12978
Posted: 15 December 2007 at 10:19pm

Paris has a bicuspid aortic valve.. which basically means instead of having 3 flaps in valve between the heart and the main vessel out to the body, she only developed 2 and they aren't well developed, as far as we know she hasn't any signs of stenosis (narrowing for those who are wondering what the heck we are talking about) but she does have some degree of regurgitation (leakage), meaning her heart has to compensate and pump even harder to get the right volume of blood out and around her body with each pump as some leaks back into her heart each time through the dodgy valve.

I have just joint up with heart children here in palmy.. and went off down to the big xmas party in welly today where the kids had a ball!]]> Sat, 15 Dec 2007 22:19:36 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262844&title=heart-kids-anyone-else#262844 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262406&title=heart-kids-anyone-else#262406 Author: Peace
Subject: 12978
Posted: 14 December 2007 at 10:15pm

Hi M2P
Olivia has Pulomary Stentosis as well as the same Pulmonary Valve having a deformity, which causes the blood to swirl funny and a small hole in the underside of hear heart.
I was told that it shouldn't effect her unless she has aspirations of wanting to become an astronaut or a deep sea diver Olivia is all GO GO GO!! She did have initial problems with weight (although she had initial probs with reflux as well) but now she has arse and thighs that could crush rocks
Olivia is also involved in a local Heart Kids which is great, they have a lot of freebies and support.
I'm happy to yarn with you anytime you want so feel free to PM me.]]> Fri, 14 Dec 2007 22:15:57 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262406&title=heart-kids-anyone-else#262406 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262401&title=heart-kids-anyone-else#262401 Author: mum2paris
Subject: 12978
Posted: 14 December 2007 at 10:05pm

Hi there Shaz, thanks for replying (thanks to lizzle too lol) For Paris, hers is a valve defect so nothing immediately needing repair etc however it does open paths for alot of probs as she ages.. scary to think what could happen in 30s, 40's 50's.. sounds ages away but well you sometimes wonder. My mum has been great as my nephew also has a pretty decent heart prob and has put me in touch with others. I mainly forget because she is so normal.. but give her a day running around at the park on their daycare trip like last week and she wakes the next day looking white and tired and groggy ick. She is mostly good though in that she knows, if she gets a bit tired she will take herself away at daycare and just chill and read books or cuddle up on the couch with cushions. Auto immune diseases sound far scarier to me at this point than what my daughter has, what sort of thing does that involve?]]> Fri, 14 Dec 2007 22:05:07 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262401&title=heart-kids-anyone-else#262401 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262366&title=heart-kids-anyone-else#262366 Author: shaz
Subject: 12978
Posted: 14 December 2007 at 9:22pm

I'll start off by saying I don't have a child with a heart condition but I do know one, he is thirteen and my daughters friends brother and I have known the family for about 8 years now. Lewis is doing fine but as you said he gets tired fast and he is pretty thin. But all in all he is a great kid and last year he got to go on a trip to Disneyland with Koru Care.
My daughter has an auto immune disease (not that that is the same as having a heart condition. So all I can say is support groups are invaluable, I couldn't have coped at the beginning without other parents to talk to. They are a wealth of knowledge and often tell you more than the Dr's do.
One thing I found out after a few years was that Natasha was entitled to her own community services card for Dr's and Prescription's and also we are able to get a disability allowance which is not income tested. It's not huge but helps pay for the trips to hospital and car parking etc.
Big hugs to you all, it's so not fare that kids get sick like this.]]> Fri, 14 Dec 2007 21:22:57 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262366&title=heart-kids-anyone-else#262366 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262341&title=heart-kids-anyone-else#262341 Author: lizzle
Subject: 12978
Posted: 14 December 2007 at 8:19pm

I dont't but I have a girlfriend in Gisborne that does, if you want me to pass on details. She is fabulous, down to earth and ust lovely - her little heart boy is mates with Jake and honestly, unless I had seen the scar, i would never have realised he had anything wrong with him - very...exerberant little boy - my gf has another two children - all of which are fine.]]> Fri, 14 Dec 2007 20:19:17 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262341&title=heart-kids-anyone-else#262341 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262335&title=heart-kids-anyone-else#262335 Author: mum2paris
Subject: 12978
Posted: 14 December 2007 at 8:11pm

Ok, so, have finally decided to findout who else here has a child with a heart defect, i think i vaguely remember when we found out last year about Paris's that some people came out of the woodwork. I found out today that the little boy we know through daycare has the same thing as Paris. I knew his dad is chairperson for heart children here but I never knew exactly what is was that the boy had till i was talking to his mum today, it was finally nice to find someone else who knows exactly the stuff we do. She said exactly the same thing.. that he gets tired quicker, sick very fast and tends to just metabolise food quickly therefore isn't terribly heavy. It felt like i had said it myself.

Have just realised how much in deinal i have been about it now that i have actually done some more reading up on the condition. Argh, i wish i hadn't but then it's good (or not) to know what's ahead for her.

So.. who else on here has a baby/child with a heart condition?

Edited by mum2paris]]> Fri, 14 Dec 2007 20:11:37 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=12978&PID=262335&title=heart-kids-anyone-else#262335