Epilepsy

Does Grieving End for Parents of Children With Special Needs?

You don’t prepare for the moment you realize something’s “wrong” with your child. No one expects that their joy from one of the happiest days of their lives will be overshadowed with pain. No one ever tells us, as parents of special children, that one of many the things we will find ourselves doing is grieving….a lot. When discovering our children have disabilities, what “normal” [...]

March 26th is Purple Day – Bringing Awarenss to Epilepsy

Special Happens has gone PURPLE! While we pay attention to a number of “Awareness projects” as J has a number of diagnosis, I’m not certain that we’ve paid attention to one of the main diagnosis that J holds that we are in a continual battle with now….just as we battle Autism, we battle Epilepsy.  November is National Epilepsy Awareness Month...but did you know Monday, March [...]

By | 2012-03-25T15:25:18+00:00 March 25th, 2012|Categories: DIY / Crafts, Epilepsy|Tags: , , , , , |2 Comments

IVIG (Intravenous Immunoglobulin) Cost in 2011

Not so long ago, I searched for numbers that would guide me, or a good idea of how much money our family would have to ‘find’ in order to pay for a promising treatment for J. IVIG. I could find nothing recent. After speaking with the hospital insurance liaison, the number was determined to be just over $5000 per day, treatment lasting two days at [...]

By | 2011-12-28T10:00:15+00:00 December 28th, 2011|Categories: Epilepsy, Medical / Therapies|Tags: , , , , |14 Comments

The Treatment of "Standing Still"

I wrote that post a week or more ago. If you don’t know which post I’m referring to, here it is…go ahead and read it…I’ll wait….. Earlier the same day… The wound was too fresh (so to speak) and I just couldn’t form words or any emotion or thought beyond despair as my friend asked how J’s oh so important EEG went. We were at [...]

By | 2011-12-19T10:00:45+00:00 December 19th, 2011|Categories: Epilepsy, Medical / Therapies|Tags: , , , , , , , , |4 Comments

A Holiday In Pain

Dear… Obscure Relations / Those-Who-Think-They-Know-Us-But-Haven’t-A-Clue / Random Citizen who has the misfortune of crossing my path during the next few days or weeks…. I’m not happy. In fact, I’m f#(&ing pissed. Not positive. I refuse to see the positive side of the “special needs” life at the moment. In particular, I cannot fathom what good is coming from my son’s epilepsy. My son’s INTRACTABLE, UNSTOPPABLE [...]

Hoping To Keep The Changes We See

As J had his latest round of IVIG almost 2 months ago….as we again noted the explosion of improvement one day, three weeks after the infusions…as we cross our fingers that this EEG, the one I sit at now, shows the proof of what we all see – that J is improving…I also find another reflection taking place…and it’s just plain odd to comprehend. This [...]

By | 2011-12-08T01:42:08+00:00 December 8th, 2011|Categories: Epilepsy, Inspiration / Laughter, Medical / Therapies|Tags: , , , , , , , |4 Comments

Epilepsy Awareness…Share Your Story

November is National Epilepsy Awareness Month…. Getting information out there all on my own is difficult. Every subject, diagnosis, awareness day or month can lend for a ton of material. So this month, I’d like to leave it to you. If you have a favorite post you’ve written about epilepsy (experiences, frustrations, accomplishments, fears, fights or insights), please leave a link to it below. [...]

By | 2011-11-12T02:05:05+00:00 November 12th, 2011|Categories: Epilepsy|Tags: , , , , |2 Comments

What You Should Know About Individualized Education Programs (IEPs) by Andrea Erins : Guest Post

The term “IEP” comes up often when discussing special education programs in public schools. If you have a child with a disability who’s about to enter school, or if you think your child may have a learning disability because he or she is struggling in school, you may want to learn more about IEPs if you haven’t already. What is an IEP? An IEP is [...]

4 Weeks and 5 Days = Round 2 of IVIG Infusion

It’s hard to believe that just about 5 weeks have passed by since our first experience with IVIG, but it has.  Since then, J has shown some major improvements (at about the 2 week mark) with speech, particularly with conversation. The most recent EEG however gave us another opinion. The much needed “proof” of IVIG’s effectiveness showed something altogether different. No need to celebrate…A possible [...]

By | 2011-10-24T15:13:25+00:00 October 24th, 2011|Categories: Epilepsy, Medical / Therapies|Tags: , , , , , , |4 Comments

Moving Forward

Deciding that I am a Mom Moving Forward…that many of us are mom’s or dad’s moving forward…has come from a number of years of doing just that. Moving forward…to the next therapy, therapist, research for diagnosis, medication, school. As parents of children with special needs we have no choice. The needs aren’t going to take a break because we need a breather, to collect our [...]

Yes! hope to HOPE

More is coming from all around. More. More comes in the form of visitors coming after a time, playing with our kids, taking them to a pumpkin patch, to a fast-food play place, to situations of would-be overstimulation, transition and limits…only to return our children to us with words we hadn’t expected. “He’s like a completely different kid.” More comes in the form of acknowledgement [...]

The Thing About Medicaid and Insurance for IVIG is….

The thing about our insurance is this…. In short, they cover IVIG. But, apparently, not for epilepsy. Medicaid pays for IVIG, but apparently not if you have insurance and that insurance denies you for any reason. I’ll let you wrap your head around that for a moment. ….. […]

By | 2011-09-26T02:03:45+00:00 September 26th, 2011|Categories: Epilepsy, Medical / Therapies|Tags: , , , , , , , |6 Comments

Day 1 and 2 of the IVIG Infusion

For all the possible immediate side effects that one can experience with an IVIG infusion – most predominantly with the initial infusion, I began this portion of our journey with trepidation. Overwhelming feelings of nausea, violent vomiting, clanging headaches and itchy rashes were not high on my list of things I felt like putting J through…or watching him go through. Day 1 of the IVIG [...]

By | 2011-09-21T13:48:26+00:00 September 21st, 2011|Categories: Epilepsy, Medical / Therapies|Tags: , , , , , , , |15 Comments

Quietly Pushing Aside Anxiety

Enjoying the freedom felt far from our home, the walk on the wide path surrounded by mountains, trees, formations of rocks placed just so, enticing every child wandering by to explore…surrounded by the freshness of autumn in Colorado, I felt I was betraying J. I haven’t yet laid hint to what is in store this coming week. I’m in a sticky place. I can’t explain [...]

Misunderstood – The Parent of a Child with Special Needs (Part II)

Resentment is a strong word... He asked if my other two children resented him. This teenager trying to understand. Do I think they resent him? The attention given, the care received, the considerations made. This was a teenager, less knowledgeable about the ways of the world, of censoring thoughts rather than allowing them to form into words. Not that this is his fault; he is [...]

Change of Plans – Plan A to Plan B and Beyond…Why I'm NOT going to Blogher

Change of plans. Not really something new at this point in our adventure. Some call it a journey, it is...but it’s also an adventure, depending upon where you are and the perspective that’s grown because of it...digressing. For so long, I had plans. A bachelor degree'd woman of mixed descent with a generous abundance of experience to offer any employer, that’s who I once was. [...]

12 Tips for a Successful 24-48 Hour EEG

Not so long ago, I was asked what to expect during an overnight stay in an Epilepsy Monitoring Unit. In other words, what to expect during an overnight stay (or the dreaded multiple-night stay) for an EEG with your child. I originally posted this elsewhere but felt this was good information to have listed here. Please feel free to add your own tips, experiences or [...]

By | 2011-06-14T02:36:57+00:00 June 14th, 2011|Categories: Epilepsy|Tags: , |4 Comments

I Said I Was Used To It, But I Wasn't Expecting This….

In many ways, I laugh at my words now. That I’m used to it. Much of it yes. I know it’s a necessity. The requirements made of a mother raising a child with special needs. I know these are the steps we have to take, that the EEGs are necessary, the movements of the stay overnight, the medication trials that will come and go. I [...]

By | 2011-06-13T00:02:34+00:00 June 13th, 2011|Categories: Epilepsy|Tags: , , , , , |13 Comments

Sunday Special Comics – How Kids View EEG's – 06-12-2011

  From my life, this is the scene, my belly laugh unforeseen. I published it here, and linked to it there where Sunday Special Comics every Sunday do appear. This is posted as part of Sunday Special Comics • Highlighting the Humor in Life on Special Happens. Want to join in? Get more info here.

By | 2011-06-12T00:06:31+00:00 June 12th, 2011|Categories: Epilepsy, Inspiration / Laughter, Sunday Special Comics|Tags: , , , , |3 Comments
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