Holding My Breath
It’s been two months since Travis was released from the hospital. While there they took him off his current mood stabilizer medications. They weren’t working, in fact he was struggling, worse than ever as far as I could tell.
One of the new medications the nurse practitioner at the hospital started him on was lithium. She asked me at the time if Travis had ever been prescribed lithium in the past. I said no. She asked me why not. I told her that I didn’t know.
They started Travis on lithium and Invega. We saw an improvement in his mood immediately. He reported that he was feeling better immediately.
He was started on the lowest dose. They increased it once at the hospital. The hospital had asked me for contact information for Travis’s psychiatrist and therapist. Because of that I thought the hospital had been in touch with them.
I talked to the Travis’s psychiatrist when he was released. I was surprised when he asked me if the hospital had changed his medications. Turns out they hadn’t reached out to Travis’s current team. Travis’s psychiatrist was not happy with any of the new medications they prescribed. Now we know why Travis has never tried them. His psychiatrist said that we would have to do regular bloodwork to make sure his lithium level stayed within the therapeutic guidelines, and to be sure it didn’t affect his kidney function.
Travis already has bloodwork done regularly. To keep an eye on his glucose and his red blood cell count. And there have been many times over the years that he has been on medications that required blood work to keep an eye on liver function. So why would this be any different?
It was mentioned to me that sometimes doctors move away from prescribing a certain medication because of the affect it had on previous patients. They have their go to prescriptions and get set in their ways.
As far as I’m concerned, I think that is why it is important to conduct a genetic test. We had been asking for this testing because of the difficulties finding the right medications for Travis. And the right doses. Travis is a big guy. In spite of this, I had noticed over the years that Travis seemed to be highly sensitive to medications and I argued that we start him on the lowest dose possible when trying new medications. I thought this may be due to his autism diagnosis.
But because he is a big guy, his doctors tend to want to start him on higher doses, the recommended dose for his size.
Have I mentioned in the past that doctors do not like to be questioned, especially by someone with no medical training?
I wasn’t getting anywhere trying to get a member of Travis’s team to perform the genetic testing. His primary care physician had put in an order, but we never heard anything. Parents were mentioning on the various Facebook groups that I follow how helpful the testing was for their child.
So when the nurse practitioner at the hospital asked if Travis had the genetic testing done, I said no, but I had been trying to get it approved. I told her that I was considering using an online company and paying for it out of pocket. She told me that if it was performed during a hospital stay Medicaid would cover it.
Have you heard of this test? During my research I came upon an article written by Kathleen Smith, PhD. LPC at www.psycom.net, titled, “Pharmacogenomics: How Does DNA Testing for Medication Work?”
Per Smith, “Pharmacogenomics, or the study of how genetics affect your body’s response to medications, is a relatively new and exciting field of science. Scientists are learning more each day about how genetic testing can be used to select the best medication for patients. Genetic testing can help a doctor determine whether a medication will be effective for a patient and provide dosing guidance. It can also help alert clinicians to medications that might be potentially harmful to patients.
Genetic testing has become increasingly popular among doctors who prescribe psychiatric medication, in particular antidepressants. Finding the right mental health medication can sometimes be a slow process full of unpleasant side effects. Roughly 40% of people who take an antidepressant will stop taking the medication within the first three months because of side effects or because they believe the medication is ineffective. People who take antidepressants often complain of unpleasant side effects like nausea, sexual dysfunction, headaches, drowsiness, dry mouth, and increased anxiety. When a person experiences side effects, it is easy for them to become discouraged and assume that no medication will help their condition.
Medication Side Effects
Side effects sometimes occur because people metabolize medications differently depending on their genetic code. For example, some people might metabolize an antidepressant more slowly, and a higher concentration of the medication in their body can cause unpleasant side effects. People who metabolize a medication very quickly might have fewer side effects but might need more of the medication to effectively treat depressive symptoms. Therefore, doctors are increasingly recommending genetic testing for depression medications to find the proper dosage and the right medication which may result in fewer side effects.
How Does Genetic Testing Work?
Genetic testing is designed to be easy and painless. To complete the test, a laboratory collects a small sample of blood or saliva from the patient. The sample is usually sent to a pharmacogenomic testing laboratory to be analyzed. This lab sequences the DNA and analyzes any variations or changes in specific genes that are associated with how you respond to a particular medication. Testing for a specific kind of medication only has to be done once, but you may require additional pharmacogenomic testing if your doctor wants to evaluate you for another type of medication.
Psychiatric Medications Available for Pharmacogenomic Testing
Because the field is still in its infancy, there is not pharmacogenomic testing available for every medication. But genetic testing is available for many of the medications that treat psychiatric conditions including anxiety, depression, bipolar disorder, schizophrenia, panic disorder, obsessive compulsive disorder (OCD), and post-traumatic stress disorder (PTSD). Here are just a few of the many psychiatric medications currently available for testing:
alprazolam (Xanax)
aripiprazole (Abilify)
brexpiprazole (Rexulti)
bupropion (Wellbutrin)
citalopram (Celexa)
clonazepam (Klonopin)
duloxetine (Cymbalta)
escitalopram (Lexapro)
fluoxetine (Prozac)
fluvoxamine (Luvox)
lorazepam (Ativan)
paroxetine (Paxil)
quetiapine (Seroquel)
risperidone (Risperdal)
sertraline (Zoloft)
venlafaxine (Effexor)
It is important to note that genetic testing is not always completely accurate. Because the field is still new, there are only a few studies supporting the claim that patients who undergo genetic testing for medication will have more positive outcomes than patients who do not.
There also are limitations to what genetic testing can tell you about how your body will metabolize a medication. There is not one pharmacogenomic test that will provide information about all medications so you may need more than one test if you are taking multiple meds. And, some medications can’t be tested using this method (i.e. aspirin and other over-the-counter pain relievers).
Sometimes genes have a strong influence over how the medication works, and sometimes other factors are more influential. These factors can include gender, age, nutrition, smoking history, and pregnancy.
Your other medical conditions and any medications you take—both prescription and over-the-counter—can also affect how medications are metabolized. Your doctor may take all of these factors into consideration when they prescribe medication and when they consider whether to recommend you for genetic testing.”
The hospital lab did the test. The results were not in by the time Travis was released. It took a few weeks and some diligence on my part to get the results.
Travis’s report is 33 pages long. I am not a doctor or a scientist. But I think I get the gist of the report. The medications are listed. Then there is a column with the heading “Standard Precautions” and a heading “Caution”. It was amazing to me how many medications lined up under the caution heading for Travis. Including most of the ones that he had tried in the past.
Later in the report it listed medications by name and gave recommendations. I took a look at the medications list, looking for the ones that Travis has been prescribed. For example, Strattera fell under the caution heading for Travis. Under a column called “Finding” it says Intermediate Metabolizer. One allele showing normal function and one showing little or no function.
Based on his genetic makeup the recommendation states, “Intermediate metabolizers of this medication may present with higher plasma concentrations of the active medication, thus an increased risk of side effects. Consider reducing the dose; monitor the patient’s response to guide dosing.”
Consider reducing the dose. Hmmm. I thought he needed a lower dose because of his sensitivities, which I believed to be related to his autism diagnosis. And maybe it still is, because his genes likely have something to do with the diagnosis.
Several of the medications he has tried said the same thing in the columns. Caution, same description under “Finding” and the same recommendation.
Travis had been prescribed Dexedrine very early on. Under “Finding” it says poor function. Two decreased function alleles. The recommendation states, “Individuals with poor function of this gene may present with increased risk of pharmacotherapy failure. Be alert to lack of efficacy.
Many of the medications that Travis had been prescribed fell into this same category.
Abilify fell into the category that recommended reducing the dose. Travis was having some success with this medication until he started receiving it as an injection. My theory is that the injection raised the average level in his system. He was hit or miss taking the pills, which I believe kept his dosage lower overall.
I couldn’t find lithium or Invega anywhere on the report.
Alleles are defined as one of two or more alternative forms of genes that arise by mutation and are found at the same place on a chromosome. The term allele denotes the variant of a given gene. In genetics it is normal for genes to show deviations or diversity - all alleles together make up a set of genetic information that defines a gene.
Travis’s psychiatrist was not happy about the new prescribed medications. But he did agree to renew once initially, until we saw the effect on Travis’s blood work. He wanted Travis to get blood work done the first week of June. We had already checked his lithium level once since he was released from the hospital and the psychiatrist increased the dose because it still wasn’t showing in the therapeutic range. Travis agreed to the higher dose because he felt like it wasn’t working as well as it did in the beginning.
We had the blood work done the morning of a scheduled Zoom meeting with the psychiatrist. I was holding my breath waiting for the results.
Travis had his annual physical with his primary care physician early in May. I told him that we still hadn’t heard from the psychiatrist he had referred Travis to. I told him that it was extremely important for Travis to see a psychiatrist from the same medical group as the rest of his team. I told him that we needed to have a plan in place in the event Travis’s blood work came back with concerns. Because I was going to fight to keep him on his current medications.
The problem is Travis’s current psychiatrist is an outlier on the philosophy of Travis’s care. He is willing to take Travis off a medication that works for his mental well-being if it is having a negative effect on his physical well-being. Which makes total sense if you can easily find a different medication that works equally well.
That has not been the case for Travis. My argument is that we need him to be mentally stable. It will not matter what his glucose number is tomorrow if he dies by suicide today. We understand that he may not live to be eighty. We want to focus on the quality of his life over the quantity.
Our family lives this with Travis 24/7. We were watching him deteriorate as the doctors kept focusing on the physical health. He was donating blood monthly and taking a chemo pill to try to lower his red blood cell count. The chemo made him nauseous and worsened his sleep insomnia. If he’s not sleeping, he’s not using his Bipap. Which meant he wasn’t getting the support to help with the oxygen level. It’s a crazy cycle.
The doctors wanted to add a prescription for sleep and a prescription for the nausea. I said no. The blood donations didn’t lower the red blood cell count. The chemo wasn’t working. They wanted to increase the dose. Even though Travis was already exhibiting side effects.
This is not focusing on the quality of his life. At the next meeting with the hematologist, I said that Travis was no longer doing the monthly blood donation and he was no longer taking the chemo pill.
I think I got my point across with the primary care physician because we did receive a call to make an intake appointment with a psychiatrist from the same medical group. And the call from the social worker that gave me a to do list, I wrote about this in my blog, “Hoping for the Best”.
I know what you’re thinking. How did Travis’s blood work look? His red blood cell count was in the range. On the very highest end of the range, but in the range. Lower than it’s been in years. His A1C was 7.3. Higher than the doctor likes, but down from 11.8 a year ago. It was 7.5 in March.
His kidney and liver function were normal. The new medications are not having a negative effect. Travis’s lithium range was in the therapeutic range, on the low side. His psychiatrist actually said that he could increase the dose if Travis wanted him to. Travis said no, he didn’t want to mess with it because he was feeling pretty good.
At the end of the meeting Travis’s psychiatrist said that he was retiring from caring for his Foothills Gateway patients in August. Thank goodness we have an intake appointment with the new psychiatrist in July.
Travis has been using his Bipap more regularly. Travis said that he can feel when his medications are wearing off, so he has been extremely compliant with taking them. The best news is that Travis actually feels the difference.
Will feeling better mentally lead to making some gains in his physical health? We’re hoping so.
The moral to this story is that fighting to get him a bed in a psychiatric hospital was the right move. If we hadn’t done that he wouldn’t be on his current cocktail of medications. I don’t want to think about where he, and so we, might be otherwise. I’m trying not to go to the place where I think too bad we were not successful on our countless previous attempts. He may have been better sooner, saving him a bunch of pain.
Trying not to think if there were more psychiatric beds out there, it’s possible tons of people could be feeling better.
At the same time, I need to temper my excitement. Because we have had honeymoon periods in the past. I’m focusing on not worrying about the future. Living in the present.
We got the blood work results. Travis’s psychiatrist ordered the refills of his medications. I exhaled. Now I need to remember to breathe, just breathe.
“Anxiety happens when you think you have to figure out everything all at once. Breathe. You’re strong. You got this. Take it day by day.” - Karen Salmansomn
“I literally have to remind myself all the time, that being afraid of things going wrong isn’t the way to make things go right.” - Healthyplace.com