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 Posted: Tue Jan 25, 2005 8:20 pm
yes, I apologise for my typo but that is the condition that I was referring to.
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Posted: Tue Jan 25, 2005 10:10 pm
lunashock Oh no, William's is something else. http://www.williams-syndrome.org/She found out because her mother was a nurse and kept saying there was something wrong with him (not in a mean way) and the doctor checked out his heart. There's a specific test for it. Eek, blizzards! eek theyre gonna test eric for that ....hes so fits it...see his pics on the first entry in my journal ..i think his dad and half sister have that....im so nervous gonk
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Posted: Tue Jan 25, 2005 10:11 pm
Dark_Enchantress yes, I apologise for my typo but that is the condition that I was referring to. dont worry most of use typos as language ^_^ welcome ~hugs~ now more pics people
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Posted: Tue Jan 25, 2005 10:17 pm
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Posted: Wed Jan 26, 2005 7:43 am
oh man Fletchen, good luck! i hope your child's meds get straightened out soon without any problems........that woudl be so hard.......and i hope your wee one is feeling better today
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Posted: Wed Jan 26, 2005 7:46 am
Dark_Enchantress Hi I'm new here, I'm wondering if anyone has a child with Hirschprung's Disease? My youngest has it and I don't know anyone else who has heard of it much less deals with it. welcome Dark Enchantress! i've never heard of hirschprung disease and i looked at the links that have been provided by fletchen......is the disease curable? is there anything that the docs can do?
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Posted: Wed Jan 26, 2005 7:48 am
oh monkey, erik is such cutie!
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Posted: Wed Jan 26, 2005 7:50 am
lunashock Tessie, are those the petit mal seizures? *hugs* All you ladies are so strong! I have a friend her son has William's, he is truly such a joy. I joke that he's a my new boyfriend cause he LOVES being affectionate and giving kisses. Yep, they're petite maul seizures...I'm thankful she doesn't convulse, I don't think I could handle it... sweatdrop I've often heard that children with William's are really affectionate heart fletchen Tessie - Is the seizure disorder called "William's"? I'm a bit confused. sweatdrop Nope, she has petite maul seizures, William's is something completely different. fletchen That sounds so scary, I can't imagine what that must seem like seeing your daughter seize like that. eek I think I'd feel completely powerless! cry You must be very strong! Oh I was freaking out big time when I realized something was wrong  ...but I did my best to stay calm after I talked to the operator. I don't know if I was strong or not, I just had to deal with the situation as best as I could ^_^ Angelique~Yuna Tessie- wow, that's great that she hasn't had a seizure since she was 3!........i can't imagine how it would be to wake your child up at midnight....and keeping her awake.......... gonk .............that must have been so hard........ sweatdrop It was HARD...I had to do every possible fun thing you could think of. We did macaroni art and paper bag puppets and I let her climb on my back and I was her personal pony and I used my eye pencil and drew cartoon eyes on my chin, put a scarf on top of my head to hide my eyes/nose, laid on my back, and grabbed a wool mop to put it on my chin to look like hair and I started to sing goofy songs to her, she thought that was hillarious lol. We coloured and played puzzles and did crafts...I was drinking coffee like it was going out of style lol
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Posted: Wed Jan 26, 2005 7:57 am
Tessie~ well it sounds like you had a super fun night at least! i bet when you finally went to sleep you crashed.........
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Posted: Wed Jan 26, 2005 8:18 am
dA_fUnKy_mOnKeY lunashock Oh no, William's is something else. http://www.williams-syndrome.org/She found out because her mother was a nurse and kept saying there was something wrong with him (not in a mean way) and the doctor checked out his heart. There's a specific test for it. Eek, blizzards! eek theyre gonna test eric for that ....hes so fits it...see his pics on the first entry in my journal ..i think his dad and half sister have that....im so nervous gonk I am on edge whenever they do tests on my kids. I can't imagine how frightening it must be for you! (Then again, I'm a nervous nelly to begin with < laughs at self). How do they test for it and how long does it take to get results? Hang in there!
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Posted: Wed Jan 26, 2005 8:25 am
Dark_Enchantress yes, I apologise for my typo but that is the condition that I was referring to. Don't sweat it! I make typos all the time - LOL. I was just trying to make sure that I understood what you were talking about because I had never heard of Hirschprung's Disease. And when I did a google search the spelling came up two different ways. redface
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Posted: Wed Jan 26, 2005 8:44 am
dA_fUnKy_mOnKeY - Eric is such a cutie! I wish I could be better with photos but my hubby seems to keep them on his computer. and I don't think we've dumped the last set from the digital camera onto the computer yet. xp
Here's one from the summer before last:  Robert, Emmeline and James heart heart heart
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Posted: Wed Jan 26, 2005 8:56 am
Tessie - You must be very tired, too! eek But it sounds like you had a lot of fun. blaugh
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Posted: Wed Jan 26, 2005 11:09 am
Angelique~Yuna Dark_Enchantress Hi I'm new here, I'm wondering if anyone has a child with Hirschprung's Disease? My youngest has it and I don't know anyone else who has heard of it much less deals with it. welcome Dark Enchantress! i've never heard of hirschprung disease and i looked at the links that have been provided by fletchen......is the disease curable? is there anything that the docs can do? Thanks for the welcome smile He had surgery when he was two months old to take most of the "diseased" part of his bowel out, but not all of it. He still has some difficulties, especially if he gets anything like the flu or other illnesses...he always ends up in the hospital on an IV for a couple days. I just find it hard because no one knows about it, even though it's pretty common. One in five thousand people have it. I find myself explaining to doctors and nurses and other people over and over. I don't really have anyone for support to tell me "yeah that's normal" if he's going through something...like last week he was having trouble pooping, or give me ideas or anything like that. Anywho...don't mean to pour out all my silly woes. smile
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Posted: Wed Jan 26, 2005 11:21 am
As for William's and how they determine it,
Many individuals with Williams syndrome remain undiagnosed or are diagnosed at a relatively late age. This is of concern since individuals with Williams syndrome can have significant and possibly progressive medical problems. When the characteristics of Williams syndrome are recognized, referral to a clinical geneticist for further diagnostic evaluation is appropriate.
The clinical diagnosis can be confirmed by a blood test. The technique known as fluorescent in situ hybridization (FISH), a diagnostic test of the DNA detects the elastin deletion on chromosome #7 in more than 98% of individuals with Williams syndrome.
I'll ask my friend how long it took to get results, if you have any questions about it, she's very sweet and answers my questions.
I've heard a little bit of Hirschsprung's come to think of it when my husband was in nursing school. Is there like a website that has maybe like a support group? I know that there's an IBS webpage just for support and education.
Tessie, I'm glad to hear that she's been doing well since. 3nodding
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and new years
