youngalix
Unregistered User
(2/7/03 7:10 pm) Reply
Help
Hi, crazy my name is Alix. Well I am only 14, but this is the only place I could find that I might be able to talk to somebody. I have been suffering from abdominal miganes since I was 12. I just found out a few days ago that these are related to CVS. I've tried so many different meds and "solutions", that I can't take it anymore. MY mom recently stumbled on to the CVSA while surffing the net, and until then we had never heard of it. When I was 12 we went out to the children's hospital in Seatle to see Dr. Christie, because there are no pediactric GI doctors were we live, but he said he couldn't do anything for me but put me on periactin, and that made me gain 30 pounds in 2 months. I can't stand to miss any more school, today was my 23 day this school year, and my tenth this semester. It's only three weeks into the semester. The past two years I missed at leats 60 days seperately. I am just searching for help. Thanks.
Desperate
Alix
rmooreny Registered User
Posts: 5
(2/8/03 2:27 pm) Reply
Re: Help
Alix,
Sorry to hear you are having such a hard time of it! Do you have penpals your age that are going through similar things? Getting to know other youth with chronic illnesses can make a huge difference.
Maybe you can plan to go to a summer camp this year for kids with chronic illnesses, so you'll have something special to look forward to. You can read a list of camps and groups providing fun for kids with disabilities here.
Do you have support from your school for the times when you have to be absent a lot? If your mom writes a letter to the school's Committee on Special Education requesting that you be evaluated for services under the Individuals with Disabilities Education Act (IDEA) and/or the Rehabilitation Act, they have to meet with you, hear from your doctors, social workers, and others, and consider how the school can help. Since your illness affects your ability to participate in the learning activities important to teens (social activities, physical education, studying, attending class, career preparation, etc.) you could make the case that you need special education services to help you continue learning. If that is agreed to, then the school could provide home tutoring for you, so you won't fall behind, could help adapt requirements for gym class, help you learn about disability resources and planning for independence as an adult, etc.
Please have your parents read this article about special education and kids with chronic illnesses. I think it will really help. It is written for the parents of kids with chronic fatigue syndrome, but many of the issues are the same.
Good luck!
Rebecca
rmooreny Registered User
Posts: 6
(2/8/03 2:28 pm) Reply
Re: Help
P.S. Alix, your parents can ask questions about special education in this forum section and can find great info on the Wrights Law website, too.
Alex!
Hey there alex,
i was so sorry to hear about what a hard time you've had. I can totally relate, it took doctors in Washington DC to find a diagnosis for me, until i went to JHU. If you would like, i have my own website for teens with chronic illnesses, the address is: hometown.aol.com/dazzlnst...index.html
i would love to hear from you there, there are a lot of teens to talk to, although i dont have your specific condition of CVS, i do have stomach problems, i am also on periactin, i would love to talk with you.
About the missing school thing, i have missed almost 2 straight years, im on homebound now, like i said i would love to talk with you and make you feel a little better about being sick. Although things might look bad now, i promise that things will get better! u can also email me:
dazzlnstrz@aol.com
Re: Help
Hello Alix :hi
I'm glad that you found us. flash I know how hard it is to have such constant gi symptoms. I spent a long time where I would puke at the drop of a hat. uke It was pretty bad. I know how hard it is to try to keep up in school and with friends when you are sick. It is way more then you should have to worry :worry about at 14. All I can say is that if you need ideas :idea on how to cope or just some support and TLD love we are here to listen whenever you need to talk.
~sharon :eeyore4
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"'There isn't anything that happens that can't teach us something,' she said, ' that can't be turned into something positive. One can't undo what's been done, but one can use it creatively.' ... 'Scar tissue is the strongest tissue in the body...So I shouldn't be surprised if it's the strongest part of the soul.'" ~ Madeleine L'Engle, A House Like A Lotus <br>
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~<br>
"I've developed a new philosophy... I only dread one day at a time." <br>
-Charlie Brown
crazy my name is Alix. Well I am only 14, but this is the only place I could find that I might be able to talk to somebody. I have been suffering from abdominal miganes since I was 12. I just found out a few days ago that these are related to CVS. I've tried so many different meds and "solutions", that I can't take it anymore. MY mom recently stumbled on to the CVSA while surffing the net, and until then we had never heard of it. When I was 12 we went out to the children's hospital in Seatle to see Dr. Christie, because there are no pediactric GI doctors were we live, but he said he couldn't do anything for me but put me on periactin, and that made me gain 30 pounds in 2 months. I can't stand to miss any more school, today was my 23 day this school year, and my tenth this semester. It's only three weeks into the semester. The past two years I missed at leats 60 days seperately. I am just searching for help. Thanks.
uke It was pretty bad. I know how hard it is to try to keep up in school and with friends when you are sick. It is way more then you should have to worry :worry about at 14. All I can say is that if you need ideas :idea on how to cope or just some support and TLD 
love we are here to listen whenever you need to talk.
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