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Posted: Thu Jul 07, 2005 3:45 pm
Cera lunashock Bless your hearts, I know it has to be frustrating to just want a straight forward diagnosis and they give you the runaround. I'm reading that link miyna posted, it's very interesting, I have to say. yeah, a 17 year run around...but I cherish every day because she is there even as much as I want to string up doctors at times twisted Oh I bet! It's just a matter of finding that right doctor who views them as a person and not a diagnosis, which can be a hard struggle if you don't have the money, which makes me mad and is a whole other rant! xd
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Posted: Tue Jul 12, 2005 8:33 pm
lunashock Cera lunashock Bless your hearts, I know it has to be frustrating to just want a straight forward diagnosis and they give you the runaround. I'm reading that link miyna posted, it's very interesting, I have to say. yeah, a 17 year run around...but I cherish every day because she is there even as much as I want to string up doctors at times twisted Oh I bet! It's just a matter of finding that right doctor who views them as a person and not a diagnosis, which can be a hard struggle if you don't have the money, which makes me mad and is a whole other rant! xd rofl i think us parents know that rant all too well xd anywho i hope everyone is well and the kiddos arent to bogged down from the weather!
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Posted: Sun Jul 17, 2005 9:31 pm
i think our members have vanished well eric has an appt. with the feeding clinic and his autism doc im so nervous last time they were pushing about a feeding tube..i dont wanna go *sigh* well ill give an update tomorrow and i hope everyone is well
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Posted: Mon Jul 18, 2005 12:33 am
I'm here to support. I have no children but I'm pregnant. Although I hope my baby won't have medical conditions, for it's health, I understand slightly... I don't tell this to many people, but when I was 3 years old, my mom had a baby and she smoked and drank when she was pregnant with it and it died when I was four because of it. I know it was a girl and her name was Molly. I remember she didn't even realise what her hands were for untill... six months, probably.
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Posted: Mon Jul 18, 2005 11:52 am
Hey people, sorry I aint been here. College was a right drag, hope everyone is ok. My family is doing good, brother is being a pain.
I found out a few days ago that I have dyslica (sp?) So..now I have something wrong with me. But yeah...I've had it since I was a baby just not known it.
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Posted: Mon Jul 18, 2005 2:12 pm
well i've posted here before about my sister. now i may have some good news. we'll find out when my mom can get her tested but i'm getting ahead of myself. let me start at the beginning. my sister is mentally challenged, legally blind, deaf and sometimes a pain in the a**. she has had siezures once a year every year since she was little. just recently, in the past three years, she's been siezure free. my mom was sure that she wasn't just retarded that she had something. so she went to so many doctors. first it was downs syndrome, but she looks normal. so it went to autism, but it wasn't that, maybe cerebral paulsy(sp?) but it wasn't that either.
well just recently my tia (aunt) went to disneyland with my little cousin and were on the jungle cruise when she heard something interesting. There was a family right next to them with a daughter that made the same sounds my sister does (she's fairly vocal). My aunt leaned over to see the girl then tapped one of the parents on the shoulder "Excuse me, i don't mean to be rude but what's wrong with her? What does she have?" she asked. The lady smiled at my aunt and said "she has Angelman Syndrome."
Well this was new and interesting. The lady explained some of the symptoms and they matched my sisters such as 80% of the people have hard to control siezures, they have a fairly happy attitude and they'll laugh at times that they're not supposed to (say when someone falls or gets hurt or in trouble). Also they're not mentally challenged just delayed in some ways. like my sister can figure out any electronical device yet she can't learn past "ABC" in her letters or "123" in her numbers and can only write a "K" for her name. They also can only speak about 3-5 words but some have up to 10-20. my sister has the higher number.
This is a very new and interesting topic. It was found my a man named Angelman. HE studied the DNA chromosome structure closely and found the cause for the way these children are. It's a very tiny mutation found on the maternal or 15th chromosome. So now we're going to get my sister Kathleen checked to see if she has it.
I know it may sound mean or sad or whatever but it's actually easier to deal with to think that she may have something. cuz it's not just some random thing. it's something that we can research and learn how to deal with better. it may help us be able to work with her better and help her more.
Has anyone else heard of Angelman Syndrome or have a child with it? I'd really love to talk to someone about it. Here's the website in case anyone has a child with these symptoms or wants to know more about AS: Angelman Syndrome Foundation
and here's a picture of my sister:
 as you can see the eye that is blind is clouded over but it's amazing what she can see with only one eye. and sorry the pic's big. this was at her birthday on December 24th
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Posted: Mon Jul 25, 2005 9:15 am
She seems like a lovely girl. I work with disabled people of all kinds, so I know how hard it can be. I see people go into this centre where I work (my brother goes there.) And then I hear that they die from something, it's a shame really.
But she seems lovely, heh, people don't seem to understand that really, people with disabilities are no different they can do things that we can't. Because they rely on something more than us, like their sight or touch or even hearing.
Phill is doing good by the way, my dad...well he is getting a little worse for wear but still going strong. He sees the phsyco twice a week, and she told him not to spin on his foot but he still does silly man. Wwe are going out together on tuesday, so that should be fun.
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Posted: Mon Jul 25, 2005 3:44 pm
She is a wonderful girl, just sometimes a pain in the butt but that's because of the way she was raised. They really spoiled her and so she throws tantrums a lot but we just hafta deal with it and work with her. it gets hard but we have to. I really look up to my mom for all she's been through and all that she puts up with. she's an amazing person to be able to go through so much. So is my sister. They both are amazing. My sister wasn't even supposed to last through the first night.
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Posted: Tue Jul 26, 2005 10:13 am
Yeah, my brother throws trantrums all the time we just deal with it. But I suppose that is how we are, my brother wasn't meant to last 3 months but he is 21 one. So...heh yeah, it just proves how silly some doctors can be.
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Posted: Tue Jul 26, 2005 10:33 am
sorry for my absence but eric had his mri on thursday and had to be intibated for it (tubes in his trach and esophogus) so he's been really sick and miserable we were in the ER sunday night after he was projectile vomitting till 2 am gonk he's still really sick atm but finally sleeping and holding down his fluids ..hes got this wierd rash now ontop of the virus and trachesophogus trama (swelling soreness ect)..and it may be the chicken pox ! but he had that vaccination neutral im just glad the puking stopped oh and hes keeping the jello down ..yay!
Thelana Darkstar wow thats interesting i hope you guys get some answers finally. Dragoon_Arcadiai wish more people could realise how special all children are regardless of disability
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Posted: Tue Jul 26, 2005 12:45 pm
Yeah me too, but poor Eric! I hope he is ok, he can pull through it. He is a strong boy heh. Yeah and I wish people could see them for who they are.
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Posted: Sat Aug 06, 2005 3:26 pm
Dear sweetness im back gonk So eric had his MRI and has been sick ever sense ive had him in and out of his doc and the ER well now since a few days ago hes like fine , he finally stopped projectile vommiting everything at me and is back to his old self ..now he just uses his hands to throw the food at me .. rolleyes .. i suppose thats an improvement xd yay ...now he has more tests wed...just as he's better gonk crying mad stupid doctors! So how is everyone? heart Lisa
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Posted: Sat Aug 06, 2005 9:23 pm
Oh my goodness, I hope he's okay and feeling better. heart
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Posted: Tue Aug 09, 2005 11:06 am
I haven't posted here in awhile but I just wanted to let everyone know that my son is going in for testing next month...I found a local place *East Tennessee* that is called the Special Learning Center...they do free testing for learning disorders on the first and third Tuesdays of the month...they also offer a special Kindergarten for kids who are not able to be in a regualr Kindergarten...so far this place is looking pretty nice...and the free testing is a mega bonus since my ex-husband has yet to switch my sons insurance back over to Tennessee...I'll update again once we know something...
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Posted: Wed Aug 10, 2005 4:15 pm
Wow luna. poor lil sweetheart. i'm glad he's doing better. let's hope that no more stuff the doctors do will make him all icky again. we have to put off planning for the tests cuz my mom's been in and out of the hospital. so we're concentrating on her and her getting the kidney transplant. maybe when my mom's doing a bit better everyone can concentrate on getting the chromosome test for my sister. there's so much that happens. and i need a job. i hate people who don't wanna take those who haven't had that much experience. it's not my fault i've been busy taking care of people. now that i need money i can't even get a job. sorry lil rant but yea. we're workin on pulling through.
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