Medication management
There is no NRXN1-specific treatment or cure, unfortunately. Because people with NRXN1 deletions are affected in many different ways, treatment needs to be tailored to each person’s unique symptoms. We’re working closely with our son’s neurodevelopmental pediatrician to find the right combination of meds to target his specific symptoms, and a lot of this process is really trial and error. It can feel overwhelming at times! You want to help your loved one, and you certainly don’t want to be making anything worse.
Check out the informational handouts for evidence-based treatment guides from major pediatrics, psychiatry, and neurology organizations pertaining to some of the more common neurodevelopmental and neuropsychiatric diagnoses associated with NRXN1: autism spectrum disorder, anxiety disorders (including OCD), ADHD, and Tourette syndrome/chronic tic disorder.
There are several considerations to keep in mind when embarking on a pharmacologic treatment plan for your child, which I’ve outlined below. It will be important to coordinate care between your child’s providers in order to implement an effective plan. Ideally, one doctor should be prescribing all medication so that your child can more effectively be monitored for behavior changes, side effects, and possible drug interactions.
Considerations for medication management:
Evidence of efficacy. Does research support the use of a specific drug or other treatment for this specific diagnosis/symptom? Not all research is created equal. Case studies or small non-randomized studies are much less convincing than large, randomized control trials with a control (placebo) group. The best evidence is meta-analyses of multiple control trials. Sometimes doctors will prescribe certain medications “off-label,” especially for children since there are often not enough studies with a pediatric population. In addition to looking at what the evidence says about efficacy in general, it’s important to keep a good record of any changes seen in your child. These records might include a behavior log or standardized behavioral checklists given to both parents and teachers.
Route of administration. Many medications need to be swallowed whole, and this can be an issue for our kids with sensory differences and learning challenges. Consider whether the medication can be administered in liquid form and, if so, will your child be willing to tolerate the taste? Some extended-release medicines, such as those targeting ADHD, are tiny beads that can be taken out of capsules and sprinkled on a preferred food. Others come in a transdermal patch, which is worn directly on the skin and is absorbed over time.
Side effects. Everyone responds to medication differently and it can be difficult to predict side effects until a child has actually tried a medication. It’s important to know and understand the possible risks and side effects so you can be attuned to any physical or behavioral changes in your child. This is particularly important for kids who have difficulty communicating how they feel. Sometimes the benefits of a medication outweigh the side effects; this should be an ongoing conversation with your child’s prescribing doctor. It’s important to not stop any medication without the advice of the doctor, even if there are side effects, because sometimes there are severe withdrawal problems when a med is stopped cold turkey.
Titration. Many psychiatric medications involve a titration schedule (slow increases in dosing) as well as a taper schedule (small decreases in dosing instead of a sudden stop). It’s important to be patient when introducing a new medication because benefits may not be seen for several weeks. It can be challenging to keep with a medication without seeing an immediate effect, but for many meds the effect will not be noticeable at first.
Contraindications. Some children have health conditions that would preclude the use of certain classes of medication. It’s important for your child’s doctor to know about all of your child’s health conditions in order to know whether or not a medication is safe.
Drug interactions. What other meds is your child already taking? Make sure his or her doctor has an up to date list, and also let them know if you start or stop anything new. Lots of medications, both over the counter and prescription, interact with each other and should not be taken at the same time.
Targeting multiple symptoms simultaneously. Many children with NRXN1 have more than one symptom or neuropsychiatric diagnosis, which might influence which medication(s) are the most effective. For instance, a child with chronic tic disorder as well as ADHD might see an exacerbation of tics with standard stimulant medications that target ADHD so might do better starting with an alpha agonist (i.e., clonidine or guanfacine).
Most importantly, always consult with your child’s doctor before starting or stopping any medication or other treatment. I’m a parent, not a doctor! Please also refer to the medication informational handouts that I’ve uploaded for more information.
