Monday, July 14, 2008

Meds, Meds & More Meds

Right after I met with Sam's Neuropsychologist about the results of his exam, I pulled into the pick-up line at Natick Montessori. Waiting for Tommy and Will to be brought to the car, the directress, Karen, who knew me well, took one look at me and said, "pull over!" I was clearly a mess. "What the heck is wrong?," she said in a concerned voice. Not only had Dr. Hentoff told me that Sam had ADHD, but he told me I should medicate him. Medicate him? The most I had ever given him was an antibiotic for an ear infection. Medicate my baby? Was he out of his mind? I was seriously distressed, and broke into inaudible sobs, as I tried to tell her what was wrong. I was so lucky she was the first person I saw - reasonable, knowledgeable and compassionate, she talked me through it, and I was able to calm down enough to pick up my children.

In the days that followed, I talked to the Head of Sam's school, our Pediatrician, and did some thorough research via the Internet. I talked to a few other parents whose children had ADHD. One friend whose child has a severe reading disability said to me, "if I could give him a pill in the morning to make this easier, you'd have to chain me down not to do it." I was so frightened it would change who he was, his identity. He's a genius, and his identity was pretty much wrapped up in that. What if it made him stupid or too tired to think? What if he wasn't Sam anymore? Yet, the disorder was causing trouble in school, and had always caused me much exhaustion at home.

In the end, my husband and I agreed to try giving him a psycho-stimulant drug in addition to some behavior mod & feedback methods. We started a med trial initiated by our Pediatrician, who gave him a small dose of Concerta. Nothing happened. The Dr. upped the dose a bit. Miraculous! He was like a new kid - in a good way. His impulse control was completely in check and his focus was significantly improved. And he was everything wonderful he had ever been before. This was in 4th grade; he is now going into 11th grade, and all we have had to do is adjust the dose as he grows.

Little did I know that Sam's med trial should have been entered the Guinness Book Of World Records as the easiest med trial ever. One drug, one dosage adjustment, and we were done! And with such fabulous results and no side effects. After the med trials we have suffered with Tommy and Will it is now unimaginable to me. It was luck, dumb luck.

Every parent of an emotionally challenged child has to, at some point, make the decision as to whether or not they want to medicate their child. There are a plethora of them available, and Dr.'s don't seem shy about prescribing them. There are also a plethora of opinions available to help you make you decision. And after having three kids on very different medications and having three very different med trials, here is my two cents.
  • your med trial could be long and difficult, and this is hard on everyone involved

  • make sure you have tried enough alternative treatments - don't turn to meds first

  • meds that worked one day may not the next, as your child grows or his metabolism changes

  • there can be side effects that outweigh the good

  • keep an ongoing table of medications, dosages, dates taken and reactions. Keep it updated. Save all med bottles or labels of meds your child has tried, but did not succeed on, for backup reference. The ones that are working will be easy to find in your medicine cabinet.

  • what's good for the goose is not always good for the gander - one kid in the family may have success with a drug and the other can react badly

  • some meds might not work alone, but work wonderfully as part of a "cocktail" - this requires a lot of testing and tweaking

  • people will judge you for giving your child medications (most of these people do not have children who need medication). You have to decide that the possibility of stabilizing your child is more important to you than their opinions are.

  • always try new meds over vacations, or at least, on weekends (or considering keeping him home from school) in case things blow up

  • When trying something new, ask your Dr. for free samples. In case it does not work, at least you have not spent (often your highest tier) co-pay on it.

  • make sure the school knows what meds your child is on

  • slow and steady wins the race - one Dr. we had poured too many meds on Tommy at once, and it was a disaster

  • children who are in the habit of taking their meds when they are young are much more likely to be med compliant adults
We came to the decision to treat Tommy with bipolar medications after he had had over a year of intense alternative therapies. He had had Occupational Therapy (OT) several times a week, as well as Behavior Therapy (BT). He had been through a Behavioral Ophthalmology program, had had his diet changed and supplements added. One day the OT, BT and I finally looked at each other and said "it's time to see a Psychiatrist and discuss medications." I am certain that I was more amendable to this because Sam's med trial had been so easy and so successful. Besides, it did not mean we gave up the other therapies; medications were a supplement to what we were already doing to ease his symptoms.

This is when I found out just how lucky we were with Sam. In comparison, Tommy's med trials have been nasty little hair balls. Bipolar with comorbidities is a completely different beast. He suffered some bad side effects before we found the right "cocktail." And this is a "cocktail" that requires constant monitoring and adjustment as he grows and changes developmentally. Not to mention it took almost 2 years to hit a homer. His gait and balance have been affected, his vision has gone blurry and sometimes doubles and he has become nauseous many times. Some meds that are supposed to help his bipolar symptoms by stabilizing his moods have made him more angry and violent. Some have made him tired and hungry, and he has gained weight (often the biggest complaint about bipolar anti-psychotic medications).

You, of course, have to trust you Doctor, and even if you think you trust him, medication trials are good way to find out what kind of doctor he really is. Our first psychiatrist was much too over zealous in trying new meds and increasing the dosages, causing Tommy a good deal of suffering because of bad side effects. He also did stupid things like prescribe him an antidepressant, without first stabilizing his mood cycles. Apparently, as we found out, this can cause a bipolar person to go into a very mixed state of euphoria and violence. This was the day I got the frantic phone call from the school reporting that Tommy was picking up metal folding chairs and hurling them at people while screaming obscenities. Yes, I left right away to go pick him up.

We soon found a much better Psychiatrist, who lowered Tommy's meds and got us started from a lower point from which to build. He always makes sure we take the time to slowly increase the dose and give each med a full chance to build up in the system before moving on. He is big into baby steps. He is also very talented and insightful about mixing meds, something our first Dr. was terrible at.

Tommy is on, or has tried, a total of 14 medications: Trileptal, Tegretol, Zonegran, Lamictal, Topamax, Depakote, Abilify, Celexa, Lithium, Rispredal, Zyprexa, Seroquel, Neurontin, and Wellbutrin. Phew. Many meds, many different doses and combinations, but we finally have a cocktail that works, at least for now. What worked? Well, we never saw the effects of Tegretol, as it gave him a rash. Lithium and Abilify do not work without using Trileptal as a base drug and Rispredal is like the cherry on top. Tommy had exaggerated symptoms of irritability, anger and violence on Zonegran, Lamictal, Topamax, Depakote, Zyprexa, and Seroquel. There was a lot of throwing up on Neurontin. And Celexa was the one he was on when he instigated the famed "hurling of the metal chairs" incident. But, if his mood cycles had been stabilized this may not have happened. And it is not to say that if we tried Depakote again, for example, that it would not work fabulously now, two years later. Meds can also take a dive when difficult cycles arise. For example, Tommy has a very hard time with seasonal changes (many bipolar people do), especially the arrival of spring. You can always be certain that at least one of his meds will need adjusting as the crocus start to bloom.

Will has been another story all together. We have tried medications to control his anxiety and his ADHD. Our former Dr. (the one we dumped) told us that because Concerta had worked so well for Sam, that we were almost sure to get a good reaction in Will. Wrong. In fact, we have tried five different ADHD meds for Will and none of them has worked. They either did nothing at all or made him angry and irritable. The psycho-stimulant drugs we have tried are Concerta, FocalinXR, Adderall and plain old Ritalin. In addition, he had a rare and serious behavioral side effect to one, Strattera, which is the only non-stimulant ADHD drug we have tried. Since then, we have given up on medicating him for ADHD and have focused on OT, BT, Cranial Sacral treatments, and we may try Acupuncture. He has been on two medications for anxiety - Zoloft and Paxil. He has been successful on Paxil. He may respond better to ADHD meds when he is older, who knows? The point is you can never shut to door, no matter how unpleasant your experiences have been when it comes to medicating a child.

2 comments:

Howard said...

Today's New Times has audio clips of stories from individuals with bipolar. In particular, an 11 year girl speaks about trying 32 different medications. Hear her story here: http://www.nytimes.com/interactive/2008/07/16/health/healthguide/TE_BIPOLAR_CLIPS.html?th&emc=th#

David Smith said...

Too much medication for a simple man. I saw that he takes Zoloft and isn't so good. This antidepressant drug cause side effects like insomnia, diarrhea or even suicidal thoughts?
Do you think to talk with a lawyer about all this situation?