Seizure medications
Routine medical care for adolescents with severe disabilities
Tomorrow I have an appointment with a local M.D. who has a unique practice that combines alternative and traditional medicine. I am feeling fine, but am in search of a different type of doctor to assist us with Quincy.
Adolescents with severe disabilities fall into a funny place when it comes to routine medical care. We have our specialists, like our pediatric neurologist, who are brilliant in their areas of specialty. And, we have a pediatrician that I find is most suited for well-baby visits, immunizations (which is an issue between us), and ear infections. It has become clear to me that Quincy is a bit more complicated than what most pediatricians deal with and they really aren’t the foremost authority on what she needs. I have spoken to my gynecologist about Quincy and she is willing to take her on as a patient, but again, I think she will mostly be useful with women issues that is stuff I ’m not quite ready to face.
I need a doctor that understands the basic, yet unique, health needs of a child who sits in a wheelchair, is unable to do any unassisted weight-bearing, and requires total care for all her needs. Because children, particularly teens like Quincy, who have these challenges have very different needs for every day health. I need to understand more about her nutritional needs and I am interested in the alternative medicine because it is generally less invasive. Lord knows Quincy takes enough pills and has had enough invasive procedures to last a lifetime, so I don’t need another doctor who wants to poke and prod and prescribe more medication.
I hope my interview disguised as an appointment goes well. Because I, too, need a doctor who understands the issues I face on a day-to-day basis. I need someone who can advise me on my health and who won’t simply tell me to get more rest or find some help. I need someone who understands that my life is what it is and to take that into consideration when treating me. I have done this type of interview before and have not yet found what I am after. I will keep my fingers crossed that maybe this new doctor will fit our needs.
Seizure medication: unfortunate side effects and ineffective control
I mentioned a while ago that we were starting Quincy on a new seizure medication. Her seizure control wasn’t as good as we’d liked and she doesn’t have much room left to move on her Keppra or her Depakote. So, we began the slow process of introducing a new medication. Unfortunately, this didn’t work as we had hoped. Initially the seizure control improved, although in our experience that is a pretty typical initial result for any new medication, but as we continued to increase her to a therapeutic level she began experiencing frustrating side effects. She began sleeping far too much, she completely lost her appetite and began refusing to eat, and we battled constant constipation. I believe the constipation was more a result of her being too lethargic for her body to even function properly.
So, we are now in the slow process of weaning her off this medication. It will take seven weeks to safely take her off this drug. We are three weeks into the process and we finally have our Quincy back. She is alert and happy, has a healthy appetite and her body is functioning regularly. So, looks like we made a good decision.
The only scary part is that as we wean her down and keep her other meds at their current level, we risk an increase in seizures. So far we haven’t had much trouble with this but we have to keep our fingers crossed.
I am off to Salt Lake City for two more days of vaccine safety meetings with the Center for Disease Control. I apologize for not writing more…I have been travelling quite a bit lately for this important work and when I’m home it seems I only have time to catch up with my family and my sleep before heading out again. Hopefully by mid-March my life will slow down a little.
Weighing the risks of seizure medications against their benefits
Often when I write I think about current issues that we face raising Quincy. It occurred to me last night that we have been raising Quincy for almost 14 years and that much of what we know today is based on our experiences over the past 14 years. On many issues we still rely on our experience from long ago to help guide our current decisions.
One of our biggest challenges over the years is our constant, frustrating struggle with seizure medication. Seizure disorders are fickle bitch to manage. When Quincy was first diagnosed we expected our doctors to prescribe the magic medication to fix the problem. You learn very quickly that there isn’t a simple solution. Seizures look different from individual to individual. They manifest themselves differently, they occur in different lobes of the brain, they change as the child grows and matures. What worked yesterday may not work today and what works tomorrow may not work next year.
Seizure medication is problematic. Some are sedatives and cause drowsiness…in Quincy’s case drowsiness tends to be a trigger for seizures so these kind of meds actually cause her more harm than good. Some have potentially serious side effects on the child’s internal organs, like their kidneys and liver, so even if they are effective you really don’t want to use them for too long. Some can effect a child’s equilibrium, some can disrupt sleep, some can affect their appetite…the list is long and scary. Parents have to constantly weight the benefit of the drug against its potential side effects.
Even after you’ve found a drug or drug combination that controls seizures and doesn’t have any serious side effects on your child, you have to deal with the fact that often seizure meds stop working. This is true. What worked well for a year or two or six may just slowly lose it’s effectiveness. We refer to it as “breaking through”. The seizures find a way to break through the meds and then you have to start again.
There is a little good news…over the past 14 years there have been some new seizure medications brought to the market that have much fewer side effects and get at seizures in new ways. We have had pretty decent success with some of these new medications (Keppra, for example) and it has allowed us to avoid some of the scarier options. However, part of Quincy’s med cocktail still contains Depakote and we hope we can remove it someday. But, so far her control is pretty good and so we are willing to leave Depakote on-board for the gain of fairly decent seizure control.
If you are caught up in this very confusing world of seizure medications take heart, you are not alone. I have learned a great deal from other families who are in the same tough position we are in…what works on one child probably won’t work on yours, but just knowing that the kinds of struggles and decisions we face are the same for others brings comfort. Keep doing your homework and talking to your doctors…we are always finding new things to try and if it’s better for Quincy then it’s worth the effort on our part to make changes.
The challenge of seizure control
Controlling seizures is one of the most difficult, complicated hurdles we face with Quincy. There is no magic formula…it is a dynamic, ever-changing situation. There seems to be little rhyme or reason as to why she will have excellent control for stretches of time and then it all just goes to Hell. There are some factors that are obvious, like whether or not she is fighting an illness or if she has had a tremendous period of growth and simply needs a higher dosage than before. But, for those simple factors there is a multitude of factors that cannot be measured. For one, Quincy takes a cocktail of seizure medications. So you have to try to figure out which one might need to be increased. Also, you need to consider how do the meds work on their own and how do they work in combination with the others? And then we walk a fine line between wanting to keep her meds at a level that will control seizures but not so high as to have her be sleepy and drugged-out. Some of her meds can’t be increased to a higher dosage without being toxic so if they are no longer effective then we must go through a very extended process of weaning her off while slowly bringing on-board a new medication that may or may not work. I think her pediatric neurologist once referred to seizure control as voodoo and he couldn’t have been more correct. Quincy has been on almost every seizure med out there and some that aren’t even out there but that we’ve had to purchase from other countries. I mention this because up until a few weeks ago Quincy was having a great stretch of seizure control. When she has these stretches she is alert, active and attentive. But then we lost it and the seizures returned. They wipe her out physically and then her struggles begin. So today we begin a dosage increase with one of her new meds and hope that it will do the job, that it won’t over-medicate her, that she won’t suffer side effects and that our voodoo science will produce the magic formula that gives her the relief that she needs. If not, we will tweak the formula another way…always striving to unlock Quincy from the seizures that control her so she can have a bright, clear mind and a healthy, happy life.
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National Vaccine Information Center (NVIC)
