Phenobarbitol - Cody was given this in the hospital before infantile spasms were diagnosed.  This drug is often used first with other seizure types, but is non-effective on infantile spasms. 

ACTH - a steroid that is injected into the muscle in the thigh.  This drug is horrid - but is the first line of treatment for infantile spasms.  You inject it twice a day for about 6 weeks usually.  Cody puffed up like a puffer fish which is very common.  He also had a voracious appetite.  He was restless, sleepless, grumpy, and ultimately it did nothing for us.  However, it helps countless children and is absolutely worth trying despite it's massive side effects. 

Depakote - This drug takes a while to determine effectiveness and to titrate it to get the right amount in the bloodstream.  Blood levels are taken regularly and they dictate whether to increase or decrease dosage.  Your neurologist will decide what your child's best blood level should be based on weight.  It was over a month till we got the right blood leves consistently.  The main side effect we experienced is  sedation, often called "dope-akote."  Cody had to have regular liver panels because this drug is esp. hard on that organ.

Pyroxidine (B6) - Sometimes (infrequently) infantile spasms are caused by a B6 deficiency so a good neuro will do a trial of a high level of B6 to rule that out.  No real side effects, just tastes horrible!  But you can compound it (as you can any drug) at a compounding pharmacy and they will add a flavored syrup to help with the bitter taste. 

Zonegran - Fast working, front line drug for infantile spasms.  Cody lost his appetite greatly on this drug, a common side effect.  Other than that, zonegran was a pretty easy to tolerate drug for us.  It, like all AED's, made him very hyperactive and sleepless.

Vigabatrin - non FDA approved in the U.S. but is a first line treatment (along with ACTH) everywhere else in the world.  Didn't do a thing for us, but has helped many.  The biggest side effect is 30% chance of periforal vision damage but Cody seemed to escape that.  We figured that was a small price to pay compared to what the seizures were doing to his brain.  This was a pretty friendly drug for us - no big side effects.  Had to order it from www.mastersmarketing.com online or from Caligore Pharmacy in New York City.  It's WAY cheaper online but a tad more undependable reg. when you'll receive it or whether it will be held in customs.  Caligore can overnight it to you if you get in a pinch.

Keppra - Very friendly drug - we didn't experience any side effects to speak of. 

Clobazam - this is in the family of benzodiazapines (tranquilizing drugs.)  This drug was really tough for us.  It made Cody move NON STOP.  Usually benzo drugs are very sedating, but Cody had a paradoxical reaction and was hyper hyper hyper.    It also made his mouth uncoordinated at first - he had trouble wrapping his lips around a spoon even.  But that lessened over time.  Also caused a bit of strydor (congested lungs) at higher dose.  We stayed at a low dose (2.5 mg). 

Klonopoin - also a benzodiazapine drug.  Clobazam and Klonopin are first line drugs for startle seizures, which is what Cody developed after growing out of infantile spasms.  Made him very hyper and restless. 

Ketogenic diet - the main side effect for Cody was reflux - horrible reflux - but he suffered from that going into it.  Constipation is also a big issue, but our dietician put him in Digestive Gold by Enzymedica (a digestive enzyme) and it helped a lot - so did magnesium supplements.  The diet didn't provide seizure control after 4 months so we weaned him off of it.  For me, the diet was a complete nightmare.  Unlike most kids who aren't hungry once they go into ketosis, Cody was ravenous the whole 4 months.  He awoke screaming every night from hunger.  Every meal was a nightmare. 

Tranxene - also a benzodiazapine drug.  Works well as a band aid drug for particularly bad seizure days.  When Cody's having a rough spell, I give him 1 a day for a week or so.  Also helps transition as you increase or decrease drugs.   We didn't notice any side effects from this drug.

Trileptol - this is what he's on right now.  This is the ONLY seizure drug that has helped him sleep instead of keeping him up all night.  He takes it twice a day - once before nap time and once at bed time and is asleep within an hour.  That part is  a huge blessing for us.  It has also helped reduce the number of severe seizures he has.  He was turning blue from lack of oxygen and we haven't seen one of those in months. 

Lamictal - Cody is on this drug right now as well.  This makes Cody super manic.  It makes him hyper happy but also hyper frenzied.  It's also exacerbated his negative behaviors (eye poking, biting, etc.)  It has also hurt his sleep at night. 

Diastat (rectal valium) - this is used as a rescue med.  We use it when Cody's having big seizures and they start to cluster (4 or more very close together.) 

Miralax & Fleet Child Enema - Anti Seizure Meds make kids constipated.  I'll never forget calling our pediatrician at 3 in the morning while Cody shrieked in pain in the background.  I said, "he's so constipated and it's so painful I think he's going to pass out!"  She said there wasn't anything we could do but wait.  When he finally was able to have a bowel movement it tore his little rectum because it was so hard.  Since going to a gastroenterologist regularly, we don't even mess around or let things get to that point.  Pediatricians just aren't the ones to go to for gastro or bowel issues.  Cody is on a regular laxative but in the past we have given him a few enemas rather than have him scream in pain and injure himself having a bowel movement. 

Children's DHA - fish oil for kids.  Tastes great - is shaped like little round balls and they are chewable.  Cody loves them and it gives him that precious brain-food.  Made by Nordic Naturals.

Animal Parade chewable multi vitamin/mineral supplement.  Made by Natures Plus.  These are vegetarian and hypo allergenic. 

Rhino Calcium chewables.  Made by Nutrition Now.  These are yummy and way easier to get down him than breaking up calcium capsules into his food!

Juice + -- I'm not a salesman for this company.  I have Cody take them because too many vegetables give him gas and he has huge gastro issues.  When he takes the veggie chewables I feel like he's getting those important "greens."  They also come in powdered form that you can pour into applesauce or bananas.

I've also tried nutritional therapy, chiropractic, cranio-sacral massage, music therapy, naturopathy, reflexology, and the Wilbarger brushing protocol. 

I'm ordering a bed from www.pediacraft.com that is specially made for people with seizures.  Check it out - it zips your child in so they can't wander at night.  It also has seizure pads.  It's pricey ($4,000'ish?) but your insurance may cover it.

We had a Pony Gait Trainer for Cody (see photo gallery.)  He began to walk shortly after we got it - it didn't do much for him.

AFO's - Cody has had a variety of foot braces.  He pronates on the inside of his foot as many delayed kids do.  There is a company called Hatchback (www.hatchbacksfootwear.com) that's located in Vancouver, Wa. that makes shoes specially designed for AFO's.  They are pricey ($60'ish) but it's better than having to buy regular shoes in 2 sizes too big!

Cody often wears Snuggle Wraps (www.snugglewraps.com) which are elbow restraints.  They are normally used for cleft palate or eye surgeries in kids.  But they work really well in kids with negative behaviors like eye poking, self induced vomiting, etc.  We use them in the car and whenever we need Cody to be alone for a short time.

Weighted pillows.  Rather than buying these, I got some fabric and sowed it together and just filled the pillows with pinto beans and/or rice or lavendar.  They make great calming aides - I lay them on top of his lap while he eats, swings, sits or I'll lay them on his back when he's trying to get to sleep.

Shawna