Messages posted by: Pamster

Hi macsmommie,

I definitely can relate to that feeling of being tired of waiting and not being listened to. That is one thing that motivated me to participate in the IAN project. To be heard and to give my family's experience with different interventions. I am glad that they are doing something as ambitious as this project and I am thrilled to be part of it.

If you have people in your area you can hand some brochures out to it would really help I bet. I got 20 of them just the other day (they came so fast I was pleasantly surprised) and have already given out five to my son's behavior analyst. I plan on giving the rest to the doctor's we see and hopefully they will inform other families about the IAN project and get people involved. The more people that gather their information here the better this project will turn out.

Nice to meet you macsmommie, I'm glad you joined us.

It's my pleasure to help out getting the word out about IAN, I just gave five brochures to our behavior analyst and I have to say that you got these out to me lightening fast!

I am really excited about sharing them with the professionals we deal with for my son's care. I am really very excited about this project and am very pleased with the data that's come out so far.

Thanks again Connie for everything!

Pamster

I can hardly wait to see the new Autism Speaks message board. I hope it's as nice as this one, we'll have to wait and see. Thanks for the info Connie, it's definitely worth waiting for. ;)

That is wonderful to hear Connie, that IAN will be helping compile new statistics about Autism and Seizure disorder. I too think there is some connection, too many children are affected by both things for there to be just a casual connection.

I will be very glad to see that part of the findings being compiled into stats. It's very exciting to be part of this project, as a parent I want to thank you all for all the hard work you've put into this project and I have very high hopes for IAN, and will help any way I can.

Hi gigi,

Nice to have you with us. I agree it's definitely trial and error when it comes to finding the right combination of treatments for your individual child. It can really be a frustrating time to get through, but the good news is you usually will find something that works.

If it's aggression you really might benefit from trying your child on this drug or others in its class. I know it's helped my son tremendously having him on Abilify and Lamictal. It's like he regained consciousness from the brain storm of seizures he'd been living through.

My heart goes out to anyone's child who becomes more aggressive and needs medication. I know how much it's helped our family, so I want to encourage you to trust your doctors and let them work with you together to find what will work. For my son depakote made him crazy, throwing himself into walls crazy and self-injurious crazy all physcially, like it was activating seizures instead of medicating the brain to stop them.

I never did figure it out and only gave him one day's worth of a try on it because I know when something is just NOT going to help, and luckily our dr's agree and LISTEN to me, that is the key, having the dr's respect your POV on your child's symptoms. Sympathy can go a long way with a parent and can help reassure the parent that they are doing the right things.

Thank you Connie and IAN Staff for getting my order of brochures to me so quickly, I will post again after I have delivered them and I will share the reactions of the Doctors and School staff.

If they all go and are used properly to help bring new people here to IAN then I am happy to have been a catalyst in setting the families up for getting this important information.

I really believe in what you're doing and I hope that people gather here in the thousands so we can learn even more then ever about Autism and how to best treat it.

Thank you again everyone, these pamphlets are simply perfect, I am very pleased with the quality and the information they conveyed.

I echo the sentiments expressed by Samsdad. What you're doing is wonderful and so very needed. I am glad someone is getting this done, because like you've stated, we know so very little about how it happens that finding common factors in data collection results must be an exciting experience Dr. Law. Thanks for keeping us in the loop of information. Keep up the great job everyone!

My son was on this for awhile too like mom2tkk experienced, the weight gain was too much to keep him on it, but we've not lost the weight he gained, he's just getting taller and bigger. I expect he will slim down somewhat over the course of the summer.

My son also has seizures so any atypical anti-psychotic can lower that seizure threshold and be a problem for a child who has seizure disorders. Just wanted to bring it up because I know it's something we worry about with our son.

I just ordered some brochures and can't wait to get them to hand out. I think that is a marvelous thing to do, and it will help you and the others reach the goal of 10K kids in the database.

I think this new page is awesome, kudos to whoever set it up and came up with the idea of letting us people help you do the leg work to make that goal of 10K kids. I am sure there will be about twenty more people added from my area and state alone.

That is how many I ordered and I know I can give those out to people who will respect them and hand out the document proudly because I will speak so highly of IAN.

Thank you for setting this new page/area up. If I had a working printer I would have printed up a few myself.

Thank you Connie! I will get the image up tomorrow as I am about to make dinner now and wanted to check and see if you'd posted about this yet. Thanks again and I am so happy to do my part to help.

Thanks Connie! I hope it's okay to use it, I think it will grab more attention if it's used to link back to the IAN site. I plan on bringing this up with our child's psychaitrist and hopefully more people will join in the researching.

Like I said in another thread I added information about IAN to my website's main page. This is what I said there:

Something that was posted on Brian Talk the other day is also worthy of being on the front page. It's called the Internet Autism Network and it's a site sponsored by Autism Speaks and it's goal is to unit families with researchers who are working on Autism Research. It takes a few hours to go through the questionnaire but I think it's worth doing, they want your real name and contact information because that is what they are doing, gathering information to be shared with people researching causes and treatments of Autism.

I think that this is a really important piece of the puzzle and happily took a few hours to answer the questions, from everything about ABA, RDI©, and Occupational Therapy and Speech Therapy to the vitamins we give Jackie which I do think have helped him somewhat. If you are a parent of a child with Autism who is under eighteen then I ask that you think about adding your family's history and current treatments to this Internet Database they are building. No one but the researchers and people involved can see your answers and the questions aren't hard, but they are thourough.

So that is what I put on my website's main page and I am thinking of adding a new update page for my son's area, Jackie's Pages talking about IAN and the message board here. I don't know when that will be done by but I got the main page information out there and added the link to the IAN site on my navigation bar. I think this is a great thing they are doing and I want to show my support for IAN.

I have a question can I use this graphic to link back to IAN?

I would save it and upload it to my website so as not to 'steal bandwidth' not that my site gets that much traffic but it does get some people checking back for updates. Let me know and I will get this gif upped and added to my navigation bar to help grab people's attention. I think having a page on the IAN site somewhere talking about "linking to us" would be a good addition since I doubt I will be the only mom with a website wanting to link to you here.

Hi everyone,

My son is ten and was diagnosed about 6 years ago though his pediatrician had clued us in when he was about three. I have a website (for disability awareness called Cyber-Soup) with our story and have added a link to the IAN Project along with some words of encouragment to other parents. I learned about IAN from a friend on a autism support forum run by a place called Brain Talk and they also have forums for Asperger's syndrome and Epilepsy along with a lot of other neurological disorders and diseases.

I just wanted to leave a little info about how I found IAN and to let people know of a great supportive forum from which I came. There are a lot of good people there and it's like a small tight knit family. I hope that some of you will check it out and find it as helpful as I have. I have been a member since 1999 and it's been around since about 1993 in one form or another. I am one of the mothers who suffers from depression, though I think mine predates the diagnosis of my son, though that really added to my depression as you probably can imagine.

Well that's about it for now, I also wanted to mention that I am an amputee, I lost the left leg almost to the hip in 1987 and nearly died. I am one of the lucky ones who lived to tell the tale. I use a wheelchair to get around and I like to tell people I feel less disabled in my chair then I ever did using an artificial leg. I hope to be an active member here and I appreciate all that the people behind IAN are doing, thank you all for doing this wonderful innovative project, I hope that the data I supplied is useful to you and the researchers.