Pile of straw

This is the first of what may be a series of posts on Julie Tittler's experience with an experimental medication for her son's ADHD.

What do you do when all the approved options for treating a condition don't work? When failure isn't an option because it means death or disability to the point of being non-functional? What do you do, when the care recipient is a child? You never give up hope. You perpetually grasp at straws.

This past week, my family had to take a deep breath and step into the unknown. My son has exceptionally severe ADHD, hyperactive and inattentive. Both criteria are off the scales. It is such a severe case of ADHD that without medication, he can't even feed himself because he's off like a flash mentally and physically. He can't concentrate long enough to eat, no less do any type of academics. We've been able to help his super hyperactivity with medication adequately. He's still hyper, but it's much more manageable.

What we can't get a handle on is his inattention. It's not like a little bit of daydreaming. Without medication for inattentiveness, he literally can't focus on anything for longer than 30-90 seconds, even things he finds interesting. I know. I've timed it. There are a number of medications on the market for treating this: Ritalin, Adderall, Strattera, Dexedrine, etc. Unfortunately, we have been through every single class of medication approved for use in pediatrics on the market. He reacts horribly to every single one. Extreme mood swings, rages, tics to the point of not being able to see. It's a wholly untenable situation.

After a two month trial for the very last medicine we could try failed, I decided to speak with his psychiatrist. She is one of the best pediatric psychiatrists in the world. She knows her stuff. She said that the behavioral problems he was having were a direct side-effect of this last medication and it needed to be stopped immediately. There was only one other thing to try. A medication named Namenda used for treating moderate to severe Alzheimer's which is showing great promise in treating ADHD, bipolar, and autism. There has been limited testing for this use in adults, and very little testing of this product in pediatric cases. She said she had seen it successfully used in pediatric cases, with few side effects.

I'm an engineer. My husband is a lawyer but has a science background as well. We researched the heck out of this medication, read testimonials, looked at clinical data from the FDA, grasped at any piece of information out there. We decided it is worth the risk. It's either try this medication, or put him on one of the ADHD medications which do help cognition and massively medicate him for the anger and mood swings caused by the medication. How many chemicals do I really want to pump into a nine-year-old at one time right when hormones will be starting to emerge? We decided to try the experimental medication.

Although my husband and I had made the decision, at nine years old my son is old enough to know what is going on and to have a say in his own treatment. It is his body and mind, after all. He'd have to be conscious of side-effects to look out for, particularly some rare side-effects which could be scary (hallucinations, labored breathing, extreme drowsiness). We need his buy-in. We explained to him what we were suggesting. We asked him about his behavior at school, which he's always very forthcoming about. He's also very insightful about what sets him off. He knows his behaviors aren't normal, and takes some solace in the fact that much of it (not all of it) isn't in his control. He decided that his behavior isn't acceptable; that it is causing problems socially and academically for him. He agreed wholeheartedly that he'd rather try the experimental medication than not treat the ADHD. Much to our surprise, he told us that he finds it annoying, and scary too, when he's so hyper and can't pay attention; that it's like he's in a speeding car as a passenger and he has no control.

This won't be an easy process. We have to purge his system of the previous failed medication for a week, and then slowly ramp up the new medication over a two week period. What was once a drug cocktail taken one time daily, has now gone back to different medications at different times a day. A careful log of mood, behavior, sleeping patterns, eating patterns, and attention duration will have to be kept so we can see if it's helping or if he's suffering side-effects. It's a lot to juggle when there is more than one caregiver in the house, different people doing different things depending on our work and family schedules.

That's what our flagship product, Curi, helps streamline. I can't get it done fast enough.