Forum for parents?

[katie's mom]

I'm new here and a "refugee" from the epilepsy foundation Web site. I was part of a large forum designed specifically for parents of childhood epilepsy patients. This was a lifeline for me and so many other members. Unfortunately, the foundation changed its format, and as a result a large number of parents have been blocked from the Web site due to privacy filters.

I know that you would be able to capture a sizable following by hosting a forum for parents. Our needs are a little different and we really enjoy the support that we receive from fellow mom's (and dad's in some cases).

Just something I thought you might consider!

Thanks for your time!!

Kristi

----

Mom to 4yo Katie (approaching a "Doose Syndrome" dx); 1st seizure Sept '08; daily seizure's since Dec '08

[Heather]

I think it would be a great idea. Parents have a different perspective than those with epilepsy and need the support of each other.

Either a "parents" forum or one for "Family and Friends of Loved Ones with Epilepsy".

Just an idea.

[RobinN]

I think the format we have here is working really well for everyone. As a parent myself, things that I have learned have helped those dealing with this alone. I am also able to understand what it is like from their perspective.

Bernard has built this house to run like a dinner party. There are different rooms to deal with venting / ranting. There is a library for research. There are music rooms and jokes, and just sitting down at the kitchen table over a cup of coffee and discussing alternatives. There are also more specific groups. More can be added if you see a need.

Stay a while and see what you think.
It works for me very well.

[skillefer]

Hi katie's mom! Welcome to CWE. Feel free to wander around, ask questions, chime in, or just vent as needed.

[Bernard]

I'm new here and a "refugee" from the epilepsy foundation Web site.

Hi Kristi, welcome to the forum.

... Unfortunately, the foundation changed its format, and as a result a large number of parents have been blocked from the Web site due to privacy filters.

I've been so busy lately that I haven't had a chance to participate at the EFA and other E forums that I normally visit. I'll have to go and see what the EFA has done.

... I know that you would be able to capture a sizable following by hosting a forum for parents. Our needs are a little different and we really enjoy the support that we receive from fellow mom's (and dad's in some cases).

I've put a lot of thought into the structure of the forums here and I am not inclined to create a separate forum for parents. Most E forums like the EFA, Braintalk, NSE, epilepsy.com, etc. have separate forums for parents and I do not like the way it really divides the community (and leads to duplicate posts to reach everyone).

I believe that parents can learn a lot from E patients and vice versa. I know I've learned a lot by reading both the "parents" and "living well" forums.

CWE has had a nice mix of parents and E patients for a long time now and I like the way every question in The Kitchen gets numerous responses/feedback. I consider CWE to be a dinner party and I think its feasible for all of us to have a seat at the same table.

Of course, nothing is set in stone and if CWE becomes so busy that people can't keep up with new posts/threads, then we'll consider making adjustments.

[Bernard]

I'm getting more requests on this from EFA PHP regulars. I'm open to discussing it, but would like to hear a compelling reason why parents can't discuss any issues in the current CWE forum structure (ie. The Kitchen, The Library and their corresponding sub-forums).

[Ruth]

Hi Katie's mom Welcome to our forum.

The epilepsy in my family is hereditary. It is hard to believe how many people in my family have epilepsy. I do and my 2 sons as well. Computers were just coming out when I was raising my family. So there were no forums or support groups at all. There is the problem of going through school. Mine were made fun of. Then, they could not get work after they graduated from High School.

If there was, I would have needed one for my family. I do believe we should have a separate area for different types of family. Here, if someone needs special help, I ask someone with that type of problem to help that person.

I believe a special room should be set up for parents with children.

[Ruth]

I am sorry, I forgot to add that I had trouble giving my children medicine. I had problems wanting them to take tests. My children would not stay still for tests.

I had epilepsy when I was a child and I would throw my medicine out. That was when my mother was not looking. Mother's who want to give there children alternative treatments, will probably have problems.

[Dutch mom]

Hello Bernard,

Because I'm on several parental forums for special needs kids (with E.) I don't really need an extra one here for myself; I'm on CWE to read about how you all experience E. as my son can't tell me about it himself, so that's the extra dimension I do find here.

But Í'm also here to help and support people, especially other parents who have special needs kids and people considering the ketogenic diet for their child. A parental forum on CWE would make it easier for me to spot those messages, because I do read selective on the forum.

On our Dutch parental forum we do have several forum categories about seizures, child epilepsy syndromes, medication, alternative treatments and research on E. and so on. But we also have subforums on special needs equipment, home adaptations, special needs education and day care, pediatric therapies and other subjects concerning special needs kids in particular. Those are subjects I don't find on CWE in the current structure.

I think clustering messages about those subjects on CWE would make it easier for parents to spot them and can increase the amount of replies by other parents. It certainly would help me to offer support to this group. But I wouldn't want this to be a forum for parents only, an open forum for all members to read and write would be best.

[joan]

I think by leaving things the way they are we all get a better range of input. Im afraid that IF we pigeon hole parents into their own "group", we will miss the input from others that arent parents, YET can still help.

Me personally, I like the way things are and Im the parent of 2 E kids.
Either way I go with the flow.

joan*




http://health.groups.yahoo.com/group...lonicEpilepsy/

[Ruth]

Hi Dutch Mom

[Bernard]

OK Dutch Mom, that's a pretty good argument. I've created The Nursery. Let's see how it goes.

[katie's mom]

Thanks so much, Bernard! I don't think that this would exclude parents from others but there are several issues that only parents deal with as primary caregivers & decision-maker of otherwise voiceless children - giving a child medicine, school issues, academic and developmental issues, how to care for children with e, etc.

Thanks, again!!

Kristi

[Ruth]

Hi Bernard,

Thank you very much. I love the name you gave it, the nursery room. The house is growing.

[brain]

Don't you just love the smell of BABY
POWDER and LOTION in this room?
And oh my gosh .. just around the corner,
Argggghhh!

They ought to ban that *TAG* spray!

*laughing*




Thanks Bernard!

[Dutch mom]

Says who? baby koppeltje duiken.gif
Future grandma Sharon being closer to baby powder than I am.

[mcrandi]

its a very good concept, lets make it true

[Ruth]

Sharon,

That is great!! You are going to be a grandmother!! So is Dutch Mom!! I love the smell of baby powder and lotion.

Ruth

[Dutch mom]

Oh no Feast, I'm not. My eldest son is age 9.
I was just replying to Brain's message here because I read in another thread she's going to be a grandmom.
I hope to be a grandmother in the future thanks to my twins (they're age 5 now so I have to wait a little while...)

[Ruth]

Hi Dutch Mom,

I have twins, they are 45 now. They are both sons. It was my daughter, age 43, that gave me 3 grandchildren. My first grandson has graduated from high school 2 years ago. Now, my second grandson is going to graduate from high school this June. My granddaughter is going into the 8th grade. Shows how old I am.