**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.  Just this month (11/08) we learned that Cody's underlying condition is "mitochondrial disease - complex 1."  We found this out after a muscle biopsy.  It doesn't change much, but it does tell us why he has uncontrolled seizures and autism.  I begged our neuro for a muscle biopsy 2 years ago and he said we didn't need one.  Finally in Seattle our neuro agreed that it would be good to do.  As it turns out, it told us everything about Cody's illness.  So insist on those tests if you feel they might reveal some information! 

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 3-6 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.   In rare cases, you can email your neuro directly and develop an email relationship.  That is ideal as there is no middle man.  If you are allowed this privilege, be sure not to flood the neuro with smaller issues by email - save those emails for big deals like critical seizure days, school note requests, etc.  Part of what makes that email relationship work is when your neuro feels he can trust that you won't bombard him.  As for how to get his email address, just as him or her for it.  They may likely say no - but they might also say yes!

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.  I bring my camera to every neuro appt. to show the neuro what seizures currently look like.  I also video behaviors like eye poking because often the Dr's don't really understand what you mean.  I kept telling Cody's eye Dr. "he eye pokes REALLY bad!"  But he kept insisting that Cody wouldn't do any damage because it would hurt too much and he'd withdraw his finger before he'd do damage.  Then he SAW the eye poking and immediately changed his thinking - stating that Cody could easily blind himself because he was doing it so aggresively. 

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???!!!  There is also financial assistance at your Children's hospital and everyone should apply.  Usually Children's Hospitals are very lenient with criteria for "frequent flyers" to the hospital like seizure kids.  Once you get that financial assistance, your prescriptions are covered, OT, PT, Dr. appts, etc.  Your insurance is billed still, but you are relieved of those co-pays.  So there are 2 ways to get financial assistance from a hospital:  a Catastrophic Fund, or Financial Assistance.

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.  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 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. 

Once your child hits the public school system, he or she will be given an IEP which is an "individual education plan" that special needs children receive.  It basically means that your child's unique disability requires an "individual" plan just for him or her.  You'll go to meetings and the teachers will show you the IEP they came up with.  These first IEP's are usually vague and have very few goals.  You can have unlimited goals on your child's IEP - as you venture into this new world of IEP's - go to wrightslaw.com online and read up on what a good IEP looks like.  If you think your child requires a 1:1 aide - speak up BEFORE that 1st meeting.  It is an act of God to get that 1:1 aide, but it is worth it.  Ask for monthly data on how your child is doing with regard to his or her IEP goals.  Once you have a few months of data, look at the progress - is it "meaningful" progress?  the schools are responsible for our children making "meaningful progress."  If it looks like poor progress or regression, ask for a meeting to share your concerns and work together to ensure meaningful progress.  You have a right to observe your child in class - ask for that.  And chances are, you'll want to start a home program in addition to that school program.  We began private ABA, speech, and OT therapies in addition to what the school provided.  It is expensive, but with children as impacted as Cody (or most kids with i.s.) they need high numbers of therapy hours to maximize their potential.  You know your child best - the question I always asked myself is "can I settle for Cody doing "ok" in school?"  I decided that I didn't want to waste 1 minute of his 3rd or 4th year of life - those critical years of development for the brain.  So we supplemented with home therapies.  Having a strong home program will help you advocate for your child at school too - you will become an expert on how your child learns, how much progress is possible, and how long it should take to reach certain goals on his IEP.  That way you'll know if your child isn't making meaningful progress at school, but he or she is at home, there is an issue.  Again, wrightslaw.com is your best friend for all things related to the public school system. 

One of my great regrets is not starting a strong home therapy program for Cody from day 1.  Seeing how much progress he is capable of - makes me regret not giving him those intensive hours of therapy from the start.  In Early Interviention, he showed up once a week for speech, OT, PT and maybe a 1 hour class - and I figured that was fine.  After all, he didn't seem to be able to accomplish much anyway.  And no one told me any different.  If I had begun ABA and Floortime therapies plus private speech and OT back then - I can't imagine where Cody could be now.  But I waited until he was 3 to start a home program with intensive hours - and I could kick myself.  Once he began ABA and I realized he can imitate, match, use sign language - I realized I'd been short changing him his whole life.  Course hindsight is 20/20.  I think in those early years you're in such shock - and you're so consumed just with the seizures and medical issues - that the idea of "therapy" is kind of too much.  But those early years are when the brain is still doing so much developing....that is the time to get that home therapy going strong.  For Cody (and for lots of kids with seizures) an ABA program works well (as long as it can be fluidly structured and delivered with a Floortime approach.)  You can read up on both online.  You'll need an ABA specialist who will meet your child and develop a program (expensive - can be up to $90 an hour but insurance sometimes covers 1/2.)  Then you hire a separate ABA therapist who comes into the home and executes the program - They charge $20-$25 an hour.  We started with 2 hours twice a week.  The consultant checks in once a month or so and makes any program revisions needed.  As for Floortime, if you're local, Rosemary White's OT program specializes in training parents in Floortime.  But you can also buy Greenspans books on the subject and learn a ton that way too.  Right now Cody gets about 12 hours a week of a private program involving ABA therapy, OT and Speech therapy.  This is in addition to the hours per week he's at school.  This may seem like a LOT of 'work' for a 4 year old, but if you have good therapists, the 'work' feels more like play.  Special care must be taken to make the 'work' full of high rewards (swinging, favorite toys and snacks) as well as trips outside, to interesting places, etc.  ABA can be done ANYWHERE.  It is simply the concept of embedding instruction into every opportunity.  As for communication, we began with PECS (picture exchange communication system) and added sign language.  Cody now knows about 12 signs and LOVES signing.  He is also going to start soon with a communication device called a "Go Talk." 

No matter how delayed your child is, he or she CAN communicate!  Get them into speech therapy ASAP no matter how young.  The worst thing we can do is underestimate what our kids can do. 

When you learn more and more about your child - and have a strong home program - be sure to include an OT's support with your ABA program.  And be sure to get vision checked by a Dr. who is trained in vision therapy.  You'd be shocked at how much vision plays a part in progress - and how you may think your child's vision is fine - but when analyzed - you find out it's not.  Think holistically about your child - so many things play a part in their ability to progress:  vision, cranial/sacral issues, gut issues (digestion, constipation, gas), sleep (melatonin has been a lifesaver), compression vests, weighted blankets, movement, vibration....ask an OT to help you really think 'big picture' about how your child is functioning DURING 'work time' and during down time.  I just kind of sent Cody to school and figured people would tell me what to do to help him.  NOT.  YOU are your child's expert.  I guarantee you no one (other than you) is looking at the big picture. 

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.  I also got a handicap placard for my car because it is so laborious to get Cody in and out of places.  Just go to your local DMV and they'll give you the paperwork.  Be sure your child has a DDD caseworker (dept. of developmental disabilities.)  That is your first step toward potentially getting on a state waiver that will support you with respite care.  Getting on a waiver and getting respite care is nearly impossible but it CAN be done.  Email me privately if you want more info on this. 

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.  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 believe Cody is on the autism spectrum and getting a diagnosis was critical for us because these services can make all the difference in your child's life.  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.

If your child has a surgery or medical procedure that requries a hospital stay ~ do NOT be afraid to be explicit, specific, and a resounding gong the whole time.  Ask for what you need.  Don't WORRY so much about what they will think of you if you push too hard.  Who cares???  You are the expert on your child.  If you don't feel you are being heard, call the hospital social worker dept. and ask for an advocate WHILE you are still there.  Trust me, if your child is in a hospital room and you escalate your concern above the nurses, you will have someone in your room within 10 minutes.  The Hospital has a system set up so that parents can get help when they feel that Dr's or Nurses are not 'hearing you' or are not doing things the way you feel they should be done.  For instance, when Cody has his g-Tube placed, I wanted him on Codeine as a pain med because I KNEW it worked for him.  He has an adverse reaction to almost everything and I knew from the past the Codeine was calming and helped him sleep.  The hospital insisted that morphine is what they always use and that there was no 'record' in his file that morphine was a problem.  I requested Codeine again and they said 'morphine is used during the surgery and we will switch him to codeine once he is out.'  So once he was out of surgery, they kept using morphine.  I brought it up again and was told that 'codeine is not an i.v. drug and we need an i.v. drug at this point because he can't eat.'  I had no argument for that one.  As I predicted, the morphine made him go crazy and he threw up all night, was awake all night, and was in total duress.  At about 5am I did some research online and read that codeine can, in fact, be given by i.v.  So I had a Dr. paged at that hour and told him what I'd found.  I told him the morphine was making Cody crazy and I INSISTED on codeine.  He said he would 'order' it.  Five hours later, and shortly before we were about to be dischardged, they came up with a syringe of codeine and put it in his i.v.  So YES, Codeine could be given by I.V...and YES Cody should have had it all along.  Instead, he had a miserable 2 days going crazy in the hospital because no one would listen to me and because no one would explore whether codeine could be given by IV.  Once he got the codeine instead of the morphine, he fell asleep like a baby because (like I already knew) Codeine is the only pain medicine that WORKS for Cody.  Sigh.  I followed up this experience with a formal complaint to the hospital.  And I recieved back a very nice letter saying that they were sorry and that it was clearly not handled well on their part.  I learned then and there that I should have PUSHED AND PUSHED AND PUSHED during that hospital stay.  But instead, I kept worrying that they hated me for bugging them so much...

I wish I'd gotten in touch with a DAN Dr. sooner.  DAN stands for "defeat autism now" - it is a basic MD or ND who has special training in autistic issues.  A DAN dr. takes a "biomedical" approach - meaning helps you come up with a supplement program that nutritionally supports your child.  He had Cody's hair, blood, stool and urine tested and worked up a complete profile of what was missing.  He detected severe candida and literally weeks after we began an anti-fungal protocol, Cody's tummy issues were hugely improved.  Ideally, this approach dovetails well with your other Dr's.  I haven't seen much conflict with regard to Cody's care. 

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!