Welcome to Forum for Families!

Thank you for choosing to participate in our new support community for those whose loved ones share the same diagnosis with other families. We created this forum because we believe that families who are in similar circumstances can support one another in ways that the professional and medical community can't offer.

As one of the original users of forumforfamilies.com, you will help pave the way for other families encountering similar issues that you have had or are having. We hope that this opportunity to receive and give support to other families will be a valuable experience for you. We encourage you to contribute your thoughts and suggestions during this BETA stage so that we can make sure the forum is meeting the needs and expectations of its users.

Below is a set of instructions to help guide you in getting started with the forum. In addition to these guidelines, there is a complete "Help" section, accessible from the link under your username.

Registration Process:

  1. Go to forumforfamilies.com/portal.php
    • This is the home page of the forum and provides entry to the main features of the website. Below is a description of this page. You may wish to come back to this area later or explore it on your own. Continue to "2" for registration instructions.
    • On the top navigation in the orange buttons are the tabs "Find a Nurse,""Forum," "Members,""Calendar" and "Sign In." Each of these areas can also be accessed from inside the main forum.
    • An area near the top right titled "Current Online Support Groups" shows the current topic areas of the forum. The same topics are listed just beneath this area with the most recent and current conversations listed underneath them. (In the beginning, there will be very little text in this area until users start to use the forum.)
    • Near the bottom left is the forum blog. We look forward to getting your comments and also hearing from you about any possible topics you'd like to see addressed in the blog.
    • Finally, at the bottom right is a poll. If you wish to participate, you will only be able to select one answer per unique poll per computer.
  2. At the top right of the page is a button "Join Now." Click on this button.
    You will be taken to a new page with the title "Registration Terms & Rules." After reading the Terms and Conditions carefully, check the box next to the text that reads "I have read, understood and agree to these rules and condiditons"
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  3. Click on "Continue Registration" button
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  4. Choose a username. This is the name you will log in as.
  5. Choose a display name. This is what other users will see next to your topics, posts, etc. We do not recommend using your full name as your display name for privacy reasons.
  6. Enter your e-mail address and password information.
  7. Choose board options including e-mail, time zone, and allowing the forum software to detect Daylight Saving Time in your time zone.
  8. Type in the "Captcha™" text to verify that you are a real person. If you have difficulty making out the letters and numbers, click on the refresh button until you see a recognizable set of characters.
  9. Click on the "Register" button.
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  10. You will receive an e-mail with a link that when clicked will complete the registration process and allow you to log in to the forum.
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Congratulations! You will now be able to enter the forum and participate with others who share the same diagnosis as you or your loved one.

Forum Overview:

Once you have logged in, you will be taken to the main forum.
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We recommend that you personalize your profile settings prior to posting new topics, but you can come back to this at any time. In the top right corner of the forum is a link to your profile information. Note the "Help" link directly underneath your username for full instructions on the forum's features.
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To Personalize Your Profile:

  1. Click on the heart/head icon to go to your full profile, or click on your sign-in name to reveal a drop-down menu of options.
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  2. On your profile page, select the "Edit My Profile" button to add pictures and information about yourself.
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    • Settings in this section are similar to other networking sites such as LinkedIn and Facebook. Feel free to add as much or as little information about yourself as you feel comfortable with.
    • Note:
      The message board allows you to use a profile picture, which is viewable by other board members (members of the ForumforFamilies.com message board) along with all of your other profile information, and an Avatar, which will be used beside your message posts.
    • During the registration process you will notice the default setting is to allow email from administrators. You may wish to leave the next box, "Receive email from other members" unchecked, so that your email address will not be shown in your profile. You will still be able to receive private messages from other members.
    • For more information about your profile, see the "Your Settings" area of the Help section.

About the Discussions:

Diagnosis-Specific Discussions

Currently, there are five different diagnosis areas: Epilepsy, Premature Infants, Respiratory Distress Syndrome, Cystic Fibrosis and Bronchopulmonary Dysplasia.

After selecting a diagnosis of interest, such as Epilepsy, you will see three main areas in which users can post:
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  1. Help and Support In this area, you may wish to ask questions of other users that do not easily fit into the "Medicine and Treatment" or "Care and Nursing" areas. An example topic thread might be behaviorial issues (such as a child using their diagnosis as an excuse not to get along with siblings), personal issues (depression or anxiety resulting from a recent development in you or your loved one's health) or logistical problems (how to get enough rest and have energy for other responsibilities).
  2. Medicine and Treatment Here you may wish to discuss specific drugs, treatment options, therapies or any other medical matter. Please remember, while we encourage sharing of your personal experiences relative to medical issues, we must stress that the forum is not a place to give or seek medical advice.
  3. Care and Nursing This area is for topics related to care and nursing, including your or your loved one's care by yourself, family members, nurses, doctors, therapists and other professional caregivers. Discussions could include types of care needed, issues with caregivers, scheduling, relationships, day treatment facilities and options.

Other Discussions

Conversations in this area are for the forum users as a whole.

  1. General Here you can post ideas or questions about using the forum that would apply to other members regardless of specific diagnosis.
  2. Financial This is an area for you to talk with others about financial issues, whether it is related to your personal budget or any aspect of working with private or public agencies on financial matters.
  3. In-Home Care Discussions about any aspect of in-home care, including finding caregivers, nurses, therapists and aides, scheduling issues, conflicts or interpersonal relations, boundaries and expectations.

To Start a New Topic:

  1. Select a diagnosis, then select one of the three topic areas (Help and Support; Medicine and Treatment; or Care and Nursing)
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  2. Click "Start New Topic"
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  3. Enter a Topic Title
    Topic Title Example: "New Here - Mom of 12 Year Old Boy"
  4. Enter a Topic Description (optional)
    Topic Description Example: "Need help and advice"
  5. Enter your question in the "Topic" area
    Topic Question Example: "Hi Everyone, My son had his first seizure on Christmas Eve 2009. It happened early in the morning - we were still in bed and he got up to go to the bathroom and had a grand mal. We went to the hospital and had a normal EEG and CAT SCAN. The second seizure was June 12th - pretty much same time and outcome. Had another EEG in July that came back normal. On August 3rd he had five seizures in a row beginning at 3 a.m. and about every hour or so after that until 9:15 when had a really BAD one. He turned blue. On August 3rd we started 500 mg of Keppra twice per day and went up to 1000mg of Keppra twice per day. We had a normal MRI last Thursday. In the past week my son has been acting very irate and he's very angry. We are getting him off of Keppra and starting Topamax now. He's very aggressive towards his little sister and seems increasingly jealous of her every move. Any advice anyone can give would be greatly appreciated."
  6. Add attachments (optional)
    Topic Attachment Example: photo
  7. Consider options to your post
    By default, emoticons and your signature are added automatically. You can choose to have an email sent to you whenever someone replies to your post.
  8. Click on "Preview Post" to see how your post will appear to other members.
  9. Click on "Post New Topic" to have your post go live so that other members can view and respond to your post.
    For more information, see the "Posting" area of the Help section.

Responding to Topics:

  1. Select a topic from the forum sidebar or from within the forum.
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  2. Click on the topic title to read the post
  3. Enter your response in the "Fast Reply" box
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    • Topic Response Example: "My daughter has been on Keppra for about 9 months now (she's 4 1/2 years old). She also takes a minimal dose of Tegretol (but when we take away the Teg. she has seizures - so I guess she just needs it).
    • We have had MAJOR behavior issues (frequent tantrums, defiance, you name it) - every day all day - so much that I (as her primary caregiver) had to start therapy - she was driving me CRAZY!!! (literally) But this DID NOT START with her Keppra, she's always kinda been like that (when she wasn't sleeping). However, she also has a speech disorder and since she has switched to Keppra, she has progressed more in these months than in the entire rest of her life. She is awake and alert the same as our other daughter, who has no issues.
    • In the past month or two, her behavior has improved greatly. I think this is because she can communicate so much better now and we've been really trying to show her appropriate ways to act when she's frustrated/angry/ sad... Also, we've begun expecting more (better behavior) of her than before. But now we know she understands and we expect her to follow the rules of our house and family."
  4. Click on "Post" to have your post go live so that other members can view and respond to your post.
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  5. If you would like to be notified when someone responds to the forum thread, click on the "Watch this topic" button and select your notification preferences.
    For more information, see the "Posting" area of the Help section.

These instructions represent the main features of the Forum to get you started. Feel free to explore the site and customize your settings, add galleries of photographs, share your experiences and make friends with other members. Thank you again for participating in Forum for Families, and please feel free to contact our team with questions, feedback and suggestions for making the forum a better and easier to use community of support for familes like yours.