**EVERY CHILD IS DIFFERENT!  Statistics don't mean squat when you realize that.  There ARE children with i.s. whose seizures go away quickly and who turn out normal.  We weren't that fortunate - but it DOES happen. 

**Infantile Spasms are a SYMPTOM of an underlying problem.  All children have differing underlying issues.  After diagnosis, you begin a quest to find that underlying problem that is creating the seizures.  You should see a genetic counselor, a metabolic Dr., a development Dr., get a PET scan, and do whatever else it takes to make sure you have looked under every stone.  Even then, you may never know the cause of the spasms.  But there are very very few truly "idiopathic" cases of i.s. (meaning no cause.)  Almost all i.s. is "cryptogenic" (meaning there is a cause but it can't be found) or "symptomatic" (cause is found.)  I kept thinking "oh, he has infantile spasms" as if it were a disease in an of itself.  It is a symptom. 

Don't settle for anyone but the best neurologist in the area.  I took the first one offered to me at the hospital where we stayed for a week in the beginning.  She was NOT good.  We are on our 4th neuro and I finally got the best.  Get a pediatric neurologist who is *also* an epileptologist (one who specializes in epilepsy.)  The downside of having the best, is that they are typically hugely difficult to reach.  I thought he and I would be in contact 1 a week since our case was so critical.  Wrong.  Neuro's manage their patients thru their nurses or assistants.  You rarely, if ever, talk to your neuro outside of your appointments in their office which are typically once every 3 months.  Most good neuros have a months long waiting list.  As soon as your child is diagnosed, get on a cancellation list immediately and call once a week to see if there have been any cancellations.  Squeaky wheel gets the grease.  When you have an established relationship with the neuro you've settled on, it will probably be frustrating relaying your complex questions and updates thru their assistants.  I faxed my questions & comments to that assistant and she delivered it the neuro so he could see MY wording, MY details - instead of trusting that she would commicate it all perfectly FOR me.  Just get their fax number, fax your sheet, and leave a message for the asst. telling her to please forward your fax to the Dr.  

Get a digital camera that you can email videos with.  Explaining what a seizure looks like is not good enough.  Video the activity and email it to your neuro.  If they won't divulge his address, they will at least give you a generic department email address to send it to. 

Children's Hospital in Seattle (and probably most Children's hospitals around the country) have a "catastrophic relief" fund.  This is for people who have children with either catastrophic diagnoses or who will be affected financially in a catastrophic way.  They calculate based on your income and your family size.  For instance, for a family of 4 who gross $100,000.00, once you hit the $8,000.00 mark in out of pocket medical bills, Children's will cover the rest for the remainder of the year.  And it's for the whole family so if you have another child who goes to Children's for anything, that is figured in.  I WISH I'd known this earlier.  WHY don't they tell you this at your appointments???!!! 

Sometime soon after your child is diagnosed, sign up for an evaluation with Early Intervention in your area.  Every city has some version of this.  It's a birth to three year old program that offers speech, physical, occupational and group therapies for children who are delayed.  It's through the local school district. Even if your child is still developing normally, get the appointment because it takes a month to get into the evaluation usually + another few weeks to get assigned therapists.  By two months into your childs diagnosis, he or she will most likely be exhibiting some signs of delay even if you don't notice them.  I was SURE when I got Cody evaluated that they'd tell me, "he's fine!"  But to my shock and horror, just months after being diagnosed he was already delayed.  I just hadn't known what to look for.

In those Early Intervention years - do NOT settle.  You are your child's voice and you know best what kind of therapies your child needs and how often.  By the time I was gutsy enough to say "I want more Occupational therapy" Cody was almost 3 and we were on our way to public schools. One good friend in the "system" sat me down and said "you need to be more of an advocate for your son."  "What?!?  I LOVE my son!  I work tirelessly for him," I said.  But she was right.  I was afraid of "the system" - I was afraid the school wouldn't like me.  That I'd be considered a militant mom.  I learned far too late that calling every day is okay.  Asking when someone will get back to you to answer your question is okay.  Telling teachers, therapists, case workers, that "that doesn't work for me" is my job.  Push push push.  You have to in this world to get remotely close to what your child needs.  If they don't hear from you, you will get lost in the system.  Same is true in the world of hospitals.  Call call call - get on cancellation lists.  Bug your neuro for his email address.  Go over people's heads to get heard.  Squeaky wheel gets the grease. 

Children with diagnoses like epilepsy (and most other disabling conditions) mean you get a disability write off on your taxes.  Check it out!  You can write off more than you think - it is a blessing given all the extra expenses it takes to care for a sick child.

Check out your local fitness clubs & community centers!  I didn't find out till a year after Cody was diagnosed that they have to offer childcare to special needs children just like normal children.  We joined the local community center and a couple of days a week, they watch Cody for 2 hours (providing a nursing assistant to go one on one with him) while I can work out, swim, take a class, etc.  It provides critical time for myself...that is so rare when you have a child with seizures.  The ones that are most apt to provide this service will be run through "parks and recreation" departments. 

Many children with seizures and/or infantile spasms often have lots of autistic characteristics.  Not all of them are autistic - and often there is so much overlap it's un-diagnoseable.  But make an appt. with the neurodevelopmental pediatrician at your local Children's Hospital and get an evaluation.  This is the quickest way to get a diagnosis and (to be honest) whether your child is autistic or not -- he or she may *look* autistic and therefore with a diagnosis will qualify for a WORLD of extra therapies in E.I. as well as the public school system.  I have no idea whether Cody is actually "autistic" but I do know that autism therapies have done wonders for his behaviors.  I only regret waiting till he was 2.5 years old to get him evaluated. He could have been in these extra therapies much longer.  They've done him a world of good.

Most importantly - don't waste months and months being depressed over things that may never happen!  In the beginning, we were told Cody would probably never walk.  I grieved and grieved this bit of information.  I researched and imagined the walkers, wheelchairs, etc... we would need over the years.  I cried and cried over Cody not being able to play in our yard (we have over an acre of land with fun boy stuff like snakes, grasshoppers, frogs, etc.)  I realized he'd never be able to frolic in our yard like a little boy should.  And guess what?  He's WALKING.  And he's showing signs he may even talk!  ALL THAT TIME WASTED!  He plays in our yard every single day!  Oh the hours of tears I wish I could have back...the pain I felt that was needless.  There is NO formula for how a child will go thru i.s.  This disease is a mystery - even to doctors!  Even today, though I'm told Cody will always be delayed, I choose to think otherwise.  The Dr's were wrong before!  Maybe they're wrong about that!  The only thing you can know for sure - is that the most healing thing you can do for your child - above medicines, diets, Dr's, etc....is LOVE.  THAT is the best therapy!  Cody has surpassed every single prognosis we've ever gotten.  I wish I hadn't let all those Dr's (though probably well meaning) decide his future in my mind.  But it was easier to imagine a horrible future than to leave it a question mark.  At least imagining based on "statistics" makes us feel like we have some modicum of control.  But we don't.  Our little ones futures are a question mark.  Some kids make amazing recoveries.  Some kids wind up delayed for life.  Some kids fall in between.  But hoping for the stars for our babies is what keeps us going.  Getting caught up in guesses about the future will only depress you and keep you from being a hope filled parent.  I wish ONE person in this journey would have said, "Every child is different.  There is no formula.  Take it one day at a time."  All I was told were horrible statistics, the word "catastrophic" was hurled my way dozens of times, and "I'm sorry" was uttered more times than I can remember.  I choose to hope!