Re: Hi, Sara

May 6, 2003

I think it's great that you are interested in helping your mother. RA is a real crummy disease and she needs all the help she can get. Often people with RA get depressed and need someone to rant with. You can help your mother by always being willing to listen and offer a shoulder to cry on.

Folic acid helps to reduce the side effects of Methotrexate, and Leucovorin is a stronger version of Folic Acid if it is needed. Also I have heard that side effects are much less and Methotrexate is more effective if given by injection instead of as pills.

Both Methotrexate and Enbrel are classed as DMARDs (Disease Modifying Anti-Rheumatic Drugs) so they should both help to reduce joint damage. Most DMARDs take a long time to work, from 6 weeks to several months. Enbrel is usually given as a standard amount twice a week, but the amount of Methotrexate can be adjusted as needed. Your mother could talk to her doctor about reducing the amount of Methotrexate.

Please feel free to post any questions you have and someone here is very likely to have some answers for you. However, we are not medical professionals so make sure you check everything with a doctor.

I'm 75 years old and have only had RA since Dec. 2001 but I have time to respond in any detail you want. If you prefer you can contact me at hvantuyl@... and if you do, put my handle (Grandpavan1927) in the subject so I won't think it is spam and delete it without reading.

May God bless you and your mother.

----- Original Message -----

From: Pacey

Rheumatoid Arthritis

Sent: Monday, May 05, 2003 3:12 PM

Subject: Re: New Member

Hi Sara,

Does your mother take folic acid along with her methotrexate, it helps with the "sickies" I also read that if you took the meth at night just before you went to bed that you could sleep through the sick time.

Hope this helps, I am pretty new at this thing myself.

It is wonderful that you are taking an interest in helping your mother. Just goes to show you what wonderful teen we have today.

Take care,

Becky Pacey

Eagar, AZ

----- Original Message -----

From: Sara

Rheumatoid Arthritis

Sent: Thursday, May 01, 2003 9:07 PM

Subject: New Member

I was searching for support groups on RA, and I stumbled across this one. I hope it can be a help to me.I am 16 years old. My mother was diagnosed with RA about a year and a half ago. She was recently put on Enbrel as a joint-preservation medication, and still remains on Methotrexate for the pain. She still gets sick from it every once in a while, but its getting better.Any pointers on how I could help her out?Thanks a lot,Sara

July 7, 2009

Sorry, the subject should read, Hi Sara. LOL

Re: How Much Independence Do I Give

Sharon,

Have you considered moving? If your husband has to commute 3 hours a day, you hate your neighbors and the town you live in, and your son doesn't have any friends, why on earth would you stay there? It sounds like a miserable existence.

Sara

How Much Independence Do I Give

It has been another horrible day in the Simmon's household. Danny's behavior is horrendous.

He wont listen he does things on his own without asking - we have rules he has broken every one of them except slamming his door - he is afraid that I will remove his bathroom door if he does that. So he can learn.

He is currently in his room screaming his head off at me cause I would not let him have two sandwiches for dinner - maybe that sounds cruel but his doctor has told him to lose weight. When I asked what he was doing he wouldn't and he said it was none of my business. So I got up went into the kitchen and again asked what he was doing and he said making another sandwich I said no you have already eaten one and I am in charge of your health and you are not having it. He started screaming at me and stomping around - his Dad tried to talk to him but got no where he still went in his room and ate his first sandwich and like I said before is in there screaming that we don't give him enough room to do what he wants.

I don't know how to handle these tantrums they are ridiculous in my mind but they are very real to Danny I just don't know what to do anymore. His father is finally starting to see a different side of him one that he can't blame on me. He has been blaming me for months that I am making Danny the way he is and today he finally saw that I did nothing and it was all Danny.

I haven't punished Danny tonight but he is getting close he just thinks he doesn't have to follow the rules which is wrong but I don't know how to make him follow them. If I take things away I make my life a living hell.

Sorry I am rambling I just don't know what to do - he is out of control he needs to be on meds but husband is still refusing to do it.

Sharon

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July 8, 2009

Sara, that is so amazing; the same thing happened to Karac. I had to

teach it to him all over again with ABA. We thought he was a genious; he

was the smartest kid in the nursery at church. Do you think Karac and Mark

have regressive autism. It has been so much worse than if he had been

born with it. Tell me how you have dealt with it. I haven't heard of any other

autistic kids like that; have you? Pat K

Re: hi, Sars

Mark could recite nursery rhymes, ABC's (forwards and backwards), numbers to 20 (forwards and backwards) when he was 1 1/2, then he completely lost all memory of everything he learned. Now, at 8 1/2 years of age, Mark can say a few letters, a few numbers, and a line or two from a nursery rhyme, but that is it. Autism is a thief.

Sara

How Much Independence Do I Give

It has been another horrible day in the Simmon's household. Danny's behavior is horrendous.

He wont listen he does things on his own without asking - we have rules he has broken every one of them except slamming his door - he is afraid that I will remove his bathroom door if he does that. So he can learn.

He is currently in his room screaming his head off at me cause I would not let him have two sandwiches for dinner - maybe that sounds cruel but his doctor has told him to lose weight. When I asked what he was doing he wouldn't and he said it was none of my business. So I got up went into the kitchen and again asked what he was doing and he said making another sandwich I said no you have already eaten one and I am in charge of your health and you are not having it. He started screaming at me and stomping around - his Dad tried to talk to him but got no where he still went in his room and ate his first sandwich and like I said before is in there screaming that we don't give him enough room to do what he wants.

I don't know how to handle these tantrums they are ridiculous in my mind but they are very real to Danny I just don't know what to do anymore. His father is finally starting to see a different side of him one that he can't blame on me. He has been blaming me for months that I am making Danny the way he is and today he finally saw that I did nothing and it was all Danny.

I haven't punished Danny tonight but he is getting close he just thinks he doesn't have to follow the rules which is wrong but I don't know how to make him follow them. If I take things away I make my life a living hell.

Sorry I am rambling I just don't know what to do - he is out of control he needs to be on meds but husband is still refusing to do it.

Sharon

Finding the best videos just got easier. Try the NEW Truveo.com.

July 8, 2009

Mark's dad was convinced he was a genius, when he was a baby. My three older kids actually have genius I.Q.'s, so it wasn't a farfetched notion. I personally think autism has something to do with the proteins being out of sync in the brain. It gives me hope, when I see the boys MRI's come back completely normal. It means structurally, nothing is wrong with their brains.

Yes, we work feverishly to optimize the boys full potential. Most therapies have failed to give us positive results, but we continue just the same. My boys are the reason, I make the programs for hiyah.

Sara

How Much Independence Do I Give

It has been another horrible day in the Simmon's household. Danny's behavior is horrendous.He wont listen he does things on his own without asking - we have rules he has broken every one of them except slamming his door - he is afraid that I will remove his bathroom door if he does that. So he can learn.He is currently in his room screaming his head off at me cause I would not let him have two sandwiches for dinner - maybe that sounds cruel but his doctor has told him to lose weight. When I asked what he was doing he wouldn't and he said it was none of my business. So I got up went into the kitchen and again asked what he was doing and he said making another sandwich I said no you have already eaten one and I am in charge of your health and you are not having it. He started screaming at me and stomping around - his Dad tried to talk to him but got no where he still went in his room and ate his first sandwich and like I said before is in there screaming that we don't give him enough room to do what he wants.I don't know how to handle these tantrums they are ridiculous in my mind but they are very real to Danny I just don't know what to do anymore. His father is finally starting to see a different side of him one that he can't blame on me. He has been blaming me for months that I am making Danny the way he is and today he finally saw that I did nothing and it was all Danny.I haven't punished Danny tonight but he is getting close he just thinks he doesn't have to follow the rules which is wrong but I don't know how to make him follow them. If I take things away I make my life a living hell.Sorry I am rambling I just don't know what to do - he is out of control he needs to be on meds but husband is still refusing to do it.Sharon

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July 8, 2009

Sara, do you have any hope that Mark and Karac will ever get back

their mental abilities? Is Mark aware of his decline? I think Karac is

aware. He use to say, "why? why? why? and "I want to get well". It

made me so sad.

How has Mark's dad dealt with it? Karac's father, my son, gave up

on him and would just like to put him away. Pat K

Re: hi, Sara

Mark's dad was convinced he was a genius, when he was a baby. My three older kids actually have genius I.Q.'s, so it wasn't a farfetched notion. I personally think autism has something to do with the proteins being out of sync in the brain. It gives me hope, when I see the boys MRI's come back completely normal. It means structurally, nothing is wrong with their brains.

Yes, we work feverishly to optimize the boys full potential. Most therapies have failed to give us positive results, but we continue just the same. My boys are the reason, I make the programs for hiyah.

Sara

How Much Independence Do I Give

It has been another horrible day in the Simmon's household. Danny's behavior is horrendous.

He wont listen he does things on his own without asking - we have rules he has broken every one of them except slamming his door - he is afraid that I will remove his bathroom door if he does that. So he can learn.

He is currently in his room screaming his head off at me cause I would not let him have two sandwiches for dinner - maybe that sounds cruel but his doctor has told him to lose weight. When I asked what he was doing he wouldn't and he said it was none of my business. So I got up went into the kitchen and again asked what he was doing and he said making another sandwich I said no you have already eaten one and I am in charge of your health and you are not having it. He started screaming at me and stomping around - his Dad tried to talk to him but got no where he still went in his room and ate his first sandwich and like I said before is in there screaming that we don't give him enough room to do what he wants.

I don't know how to handle these tantrums they are ridiculous in my mind but they are very real to Danny I just don't know what to do anymore. His father is finally starting to see a different side of him one that he can't blame on me. He has been blaming me for months that I am making Danny the way he is and today he finally saw that I did nothing and it was all Danny.

I haven't punished Danny tonight but he is getting close he just thinks he doesn't have to follow the rules which is wrong but I don't know how to make him follow them. If I take things away I make my life a living hell.

Sorry I am rambling I just don't know what to do - he is out of control he needs to be on meds but husband is still refusing to do it.

Sharon

Finding the best videos just got easier. Try the NEW Truveo.com.

July 8, 2009

I really don't know. I hope there will be a 'cure' or a discovery of the cause(s), within their lifetime. I don't think Mark is aware of his decline. He has fallen so low, that he doesn't possess any type of abstract thinking. He was higher functioning at 1 1/2 than he is now at almost 9 years of age. We have videotape to prove it. It's sad that Karac remembers his former self.

Back when my daughter was in high school, one of her good friends was in a terrible car crash. She was on the interstate, driving to a part-time job at a local bookstore. She reached for something, and veered across the median and hit a semi-truck. She was in a little VW Beetle. It was torn in half. She flew 30 feet in the air, and hit the ground. Miraculously, she lived, but was permanently brain-damaged. She had been in gifted with my daughter (since third grade) , and was actually one of the smartest kids in the class. Now, ten years later, she is still a shell of who she was. She remembers how she used to be, which makes it worse. Having intelligence, then sweeping it away (from any cause) is very sad.

Mark's dad has accepted the boys the way they are. He loves them, as I do. We still hope their condition will change. We challenge them to do their best academically. That's about all we can do (besides the speech, O.T., ABA, etc., which we've been doing for the past six years).

Sara

How Much Independence Do I Give

It has been another horrible day in the Simmon's household. Danny's behavior is horrendous.He wont listen he does things on his own without asking - we have rules he has broken every one of them except slamming his door - he is afraid that I will remove his bathroom door if he does that. So he can learn.He is currently in his room screaming his head off at me cause I would not let him have two sandwiches for dinner - maybe that sounds cruel but his doctor has told him to lose weight. When I asked what he was doing he wouldn't and he said it was none of my business. So I got up went into the kitchen and again asked what he was doing and he said making another sandwich I said no you have already eaten one and I am in charge of your health and you are not having it. He started screaming at me and stomping around - his Dad tried to talk to him but got no where he still went in his room and ate his first sandwich and like I said before is in there screaming that we don't give him enough room to do what he wants.I don't know how to handle these tantrums they are ridiculous in my mind but they are very real to Danny I just don't know what to do anymore. His father is finally starting to see a different side of him one that he can't blame on me. He has been blaming me for months that I am making Danny the way he is and today he finally saw that I did nothing and it was all Danny.I haven't punished Danny tonight but he is getting close he just thinks he doesn't have to follow the rules which is wrong but I don't know how to make him follow them. If I take things away I make my life a living hell.Sorry I am rambling I just don't know what to do - he is out of control he needs to be on meds but husband is still refusing to do it.Sharon

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July 8, 2009

You and your husband seem to be dealing with it well. Most of the time

I do, but sometimes the hurt just comes bubbling up to the surface

As I say this, I look over at Karac and he is giving me his great big beautiful smile,

and it makes the pain go away.

Thank you for your always helpful responses. Let me know about any progress that

you see in Mark

The only progress I see in Karac is the self control of his aggression and his increased

desire to imitate appropriate male behavior, but cognitively I'm not seeing any improvement.

Well, Karac wants my attention. blessings, Pat K

Re: hi, Sara

I really don't know. I hope there will be a 'cure' or a discovery of the cause(s), within their lifetime. I don't think Mark is aware of his decline. He has fallen so low, that he doesn't possess any type of abstract thinking. He was higher functioning at 1 1/2 than he is now at almost 9 years of age. We have videotape to prove it. It's sad that Karac remembers his former self.

Back when my daughter was in high school, one of her good friends was in a terrible car crash. She was on the interstate, driving to a part-time job at a local bookstore. She reached for something, and veered across the median and hit a semi-truck. She was in a little VW Beetle. It was torn in half. She flew 30 feet in the air, and hit the ground. Miraculously, she lived, but was permanently brain-damaged. She had been in gifted with my daughter (since third grade) , and was actually one of the smartest kids in the class. Now, ten years later, she is still a shell of who she was. She remembers how she used to be, which makes it worse. Having intelligence, then sweeping it away (from any cause) is very sad.

Mark's dad has accepted the boys the way they are. He loves them, as I do. We still hope their condition will change. We challenge them to do their best academically. That's about all we can do (besides the speech, O.T., ABA, etc., which we've been doing for the past six years).

Sara

How Much Independence Do I Give

It has been another horrible day in the Simmon's household. Danny's behavior is horrendous.

He wont listen he does things on his own without asking - we have rules he has broken every one of them except slamming his door - he is afraid that I will remove his bathroom door if he does that. So he can learn.

He is currently in his room screaming his head off at me cause I would not let him have two sandwiches for dinner - maybe that sounds cruel but his doctor has told him to lose weight. When I asked what he was doing he wouldn't and he said it was none of my business. So I got up went into the kitchen and again asked what he was doing and he said making another sandwich I said no you have already eaten one and I am in charge of your health and you are not having it. He started screaming at me and stomping around - his Dad tried to talk to him but got no where he still went in his room and ate his first sandwich and like I said before is in there screaming that we don't give him enough room to do what he wants.

I don't know how to handle these tantrums they are ridiculous in my mind but they are very real to Danny I just don't know what to do anymore. His father is finally starting to see a different side of him one that he can't blame on me. He has been blaming me for months that I am making Danny the way he is and today he finally saw that I did nothing and it was all Danny.

I haven't punished Danny tonight but he is getting close he just thinks he doesn't have to follow the rules which is wrong but I don't know how to make him follow them. If I take things away I make my life a living hell.

Sorry I am rambling I just don't know what to do - he is out of control he needs to be on meds but husband is still refusing to do it.

Sharon

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