Thanks for sharing your knowledge of medications and experience of your daughter. I am pleased you have a physician who appears fully engaged with helping your daughter. No doubt, those side effects of medications are one of the down side of medications. We recognized that in the development of the algorithm. As a result, we not only recommend non-psychotropic medication interventions such as exercise, nutrition and sleep as the first step in the algorithm. In the article accompanying the algorithm, the “experts  recommended  that  clinicians  first  use  non-pharmacological  interventions,  including  functional behavior analysis, behavioral management,  and  environmental  modifications,  before  pharmacotherapy. Such comprehensive psychosocial  interventions  have  the  potential  to  reduce  stress,  improve  adaptive  functions,  and  provide  meaningful  participation  in  school  and  work-related  activities”. Once these approaches are used, the physician can then adhere with the steps on the algorithm. This will reduce side effects by offering one medication at a time and maintaining a favorable benefit risk ratio.

That is a clinical question. For adults, we recommended that at least prenatal alcohol exposure should be present to qualify. In children, we recommended that a formal diagnosis be completed

Clinically, doctors would prefer to have a formal diagnosis to justify treatment (including applying the algorithm), so efforts should be made to get the right diagnosis. In desperate situations where waiting for a diagnosis will result in harm, the benefits of trying the algorithm could be clinically argued surpass the risk.

Individuals diagnosed with a disorder may embrace it as an identity and have problems switching to a new diagnosis when new information is received, especially as adults. The same can be said of physicians as well. Physicians can get attracted to the ‘best’ explanation of the patient’s presentation. The key is to develop a good relationship with the doctor and present a strategy that starts with acknowledging that you are all doing your best. The next step in the strategy includes suggesting to the doctor that the change in diagnosis is based on solid facts and for the good of the patient, the family and for the doctor as well.

Yes but only if it is safe and as long as the principles of enhancing functioning are followed. There is evidence that adequate and appropriate support for individuals enhances functioning. Therefore, weaning off medications will depend on the levels of support and functioning of the adult. We should discourage the mistaken belief that, “As the individual ages, the problems disappear.”

The principles to adopt are: Adopt a collaborative approach with physicians and all caregivers. Ensure the child is stable and functioning. If the child is not stable and functioning, you need to determine what are the risks of having the side effects compared to having the benefits of too many medications. Next, identify the goals that will inform the anticipated changes in medications. If a decision is made to reduce and/or stop some of the medications, the physician may want to identify the clusters of the algorithm from the past clinical picture (symptoms that the patient has displayed). The physician should also determine the resources available to the caregivers. Choose the clusters that impair functioning the most for the patient, and continue the medications recommended under those clusters. For instance, keep the stimulants like Concerta if the hyperactive cluster was identified as the most impairing. Then decide what cluster least was impairing to functioning, or what medication is not on the algorithm, and start a process of reduction and discontinuation. Your physician should closely monitor the process and the medications should be reduced slowly. Re-evaluate the decision to reduce/remove medications if reducing a medication worsens the clinical picture (overall symptoms). Remember that the overall goal of medication management is that the list of benefits from all medications outweigh the resulting and inevitable side effects. This process may take a long time and therefore patience, close monitoring, and active documentation of objective changes are very necessary.

Doctors are familiar with strategies to change medications. Sometimes this can include stopping all medications to start the right medication. At times doctors can try what is called a “crossover,” which is when a current medication is reduced in stages at the same time as a new medication is being introduced, until the original medication can finally be discontinued. With a “crossover” strategy, the patient will take both medications, and once stability has been achieved with the new medication, the physician will remove and discontinue the unwanted medication. The physician will consider this strategy while being aware of the properties of the medication and the required goal of treatment.

It is important when “working backwards” or reducing current medications to determine which is the most function-impairing cluster(s), and consequently what medications are indicated for the cluster(s). If the symptoms presented by the patient currently, or in the past, fall under a certain cluster, the next step is to determine the level of impairment from that cluster, as well as whether that cluster should be considered as a major target for treatment. With help from the caregivers, the physician should decide which cluster is major (most impairing) and which is minor.  Medications that are recommended on the algorithm for the most impairing cluster should be the last to be discontinued. Medications that are not on the algorithm should then be removed. Next, medications that are on the algorithm for minor clusters should be removed. Discontinuing medications should follow the same principles as introducing medications: improved functioning is the target and goal, consider the balance of benefits and risks (side effects), and start with a low dose and increase slowly.

The timeline for effectiveness will last the same for 1 or 2 mg, except if the benefit of 2 mg is so effective that it will extend beyond the time limit expected for 1 mg to work. As well, sometimes the residual effects of the medication accumulates over time, and not just end at the end of the effectiveness timelines (otherwise called the “half-life” of the medication/drug).

If your daughter had visits that are more frequent with your physician, then the physician would be able to change the medication and determine if the cause of the agitation, aggression, and moodiness is from the Fluoxetine. One thing to note is that the increase in Fluoxetine  will likely cause agitation and moodiness for only about three to five days, and then revert back to the benefits she had prior to the change. Risperidone and Abilify can both reduce agitation, but there is individual variation, where a medication will work in one person but not on another. I think this may be the case here, where a medication may not be effective for your daughter simply due to individual variation. However, it is unlikely that Fluoxetine would be causing such problems when it seemed to have worked at 20mg. Another possibility to explore with your pharmacist is whether the Fluoxetine may be causing an increased level of Abilify in your child’s system and lead to side effects (this is called an “extrapyramidal effect”). If your daughter is experiencing a side effect called “akathisia,” then there is a specific type of treatment to follow.

In a study with five individuals with FASD, use of cannabinoids (specifically cannabidiol –CBD) was associated with reduction in disruptive behavior. This was not a controlled study and so it is thin evidence but seems intuitive to assume it should help. First, it was shown that CBD helped in autism for the same indication.

It is a little too early yet to recommend specifics due to insufficient research evidence on CBD.

Dr. Ana Hanlon-Dearman – Pediatrician – Manitoba

Dr. Hasu Rajani – Pediatrician – Alberta

Dr. Rod Densmore – Family Physician – British Columbia

Dr. Mansfield Mela – Forensic Psychiatrist – Saskatchewan

You can share the below link, or a copy of the article, with any clinicians who are working with your family member. The article is “open-access” which means it can be downloaded and read by anyone without a subscription to the research journal.

The article is published online at this website: https://jptcp.com/index.php/jptcp/article/view/681

The reference for the article is: Mela, M., Hanlon-Dearman, A., Ahmed, A. G., Rich, S., Densmore, R., Reid, D., … & Loock, C. (2020). Treatment algorithm for the use of psychopharmacological agents in individuals prenatally exposed to alcohol and/or with diagnosis of fetal alcohol spectrum disorder (FASD). Journal of Population Therapeutics and Clinical Pharmacology, 27(3), e1-e13.

We invite feedback from clinicians on how effectively the algorithm worked with their patients, clinicians can complete a survey here: /algorithm/

Apart from a possible side effect of weight gain that can be problematic, it is a good medication for most people. It is better as an antidepressant, but it can help anxiety and taking it improves sleep.

Clonidine and Straterra are the possible options that both help with hyperactivity and sleep. Clonidine is listed in the algorithm under the hyperarousal cluster. On the other hand, melatonin is quite natural and it is a good option to help with sleep. Melatonin is not listed in the algorithm because we do not have a sleep cluster. However, melatonin is recommended in the published article accompanying the algorithm.

I expect it would be helpful to reduce impulsivity in the hyperactive cluster. If cognitive inflexibility is thought to contribute to the hypersexuality, then Risperidone, Olanzapine and Abilify are the recommended treatment options. Occasionally, hormonal interventions may be needed to address hypersexuality. Finally, of course, never neglect the important role of non-medication approaches to address symptoms. This will include understanding the origin of the hypersexual behavior and thought.

Apart from the medications listed under the cognitive inflexibility cluster on the algorithm, there are multiple psychological and social approaches. One intervention that may be helpful for cognitive inflexibility is Cognitive remediation therapy. There is not much research on interventions that target cognitive inflexibility specifically, but interventions that target overall executive functioning may be helpful. These interventions include physical activity (the FAST Club as described in Orr et al., 2018, https://doi.org/10.1123/apaq.2017-0137) and the Alert Program (as described in Wells et al., 2012, https://doi.org/10.5014/ajot.2012.002691). Some other options (for which we do not currently have research evidence but may likely be helpful) include mentalization, use of games, direct experiments, environmental support, distractions, cognitive control training, cognitive restructuring, and/or cognitive flexibility training.

Concerta should have been sufficient to help. Apart from adjusting the dose of Concerta, I will suggest some additional strategies for managing impulsivity: 1) Target self-esteem, use journaling, talking with a trusted person, mindfulness, and 2) If there is agitation and aggression, consider treating the cognitive inflexibility cluster.

It is possible that he could benefit from medications under either the emotional regulation cluster, or the cognitive inflexibility cluster, but first the cluster that is most impairing needs to be identified. Your doctor should be able to identify which cluster is causing more problems. If the doctor is not able to identify the more impairing cluster, then they will judge which of the two recommended medications for the two clusters is better to prescribe first. This judgement will be based on the chemical properties of each medication. It is not recommended to start two medications at the same time, because you will not be able to decipher which one was effective/ineffective.

Yes. There are at least two medication choices for each of the first and second line recommendations. The exception is the cognitive flexibility cluster, which has only Risperidone  as the recommended medication. Please work with your clinician to determine which medication is best for an individual patient. Physicians know that medications can come from different subgroups or classes and will choose accordingly.

If a patient has symptoms representing all four clusters, a clinician should systematically address them. By choosing the most impairing cluster, you make caring for someone with FASD easier, and you may unintentionally alleviate the symptoms that fall under the other clusters (waiting to be treated). Introducing one medication at a time is recommended to reduce potentially harmful side effects, understand the body’s response to each and manage drug-to-drug interactions.

First, thanks for sharing a success story. Our first principle is do not change anything if a patient is functioning adequately (i.e., “if it aint broke, don’t fix it”). The number of clusters to address depends on the clinical features/symptoms the client presents with. Once a target clusters is identified, clinicians should work systematically to eliminate the negative effect of that cluster and therefore improve function. There are four clusters in the algorithm, and we hope that feedback on the algorithm will help us to refine the clusters and the medications recommended (if needed).

Yes, if the clusters are prominent and deserve individual treatment.