If you or someone you know is playing medicine roulette, please read and share this post. Knowledge is power & if it hadn’t been for another SPED momma, I would have never know this test existed!
I’ve mentioned before that we’ve been playing medicine roulette with QMonster. It hasn’t been easy and we have found more medications that do NOT work than actually do. It has been a frustrating process. In fact, in my opinion, Q’s hospital stay was a direct result of a medication change gone wrong. At Q’s school, one of his sped teachers mentioned that her son has similar issues to Q and they had a GeneSight test done to help them figure out why his medications were not working.
I mentioned the test to Q’s dr. at the time and he acknowledged the test but said that his office doesn’t do the testing. He would have to find us a place to do the test. He didn’t seem overly enthused about the test so I let it go and didn’t push the issue. I wasn’t really sure what the test was or why it was important so I think that is why I let it go. Months go by, medication changes, hospital stays happen, changing doctors happen, etc. At this point, I am frustrated. I am tired of new medications with no results so the first thing I did, when speaking with the new Dr., was mention the GeneSight test. Y’all we got the test done THAT FREAKING DAY. The day I requested it, it was done, in her office, BY ME. It was literally a simple throat swab that I did on Q and stuck the swabs in an envelope. No big deal. She sent them off and that was that. POOF! Now, I will say, the test isn’t covered by my insurance (and from what I read, it isn’t covered by most. though they offer a “scholarship” if you cannot afford to pay for the test.) and we ended up paying $300 out of pocket.We had the results back by our next appointment.
The GeneSight test, from what I gather, has different components which test for different types of medications. Given Q’s diagnosis, we requested for the test to look at Psychotropic & ADHD medications. You guys, science is AMAZING. Basically, they use some sort of “science magic” to compare your genetic makeup to the drug’s makeup and see if there are any known gene-drug interactions. From a simple throat swab, we got back 13 pages of information taking all sorts of medications and sorting them, by medication type, into a green/yellow/red type breakdown for us. Green means good. Yellow means proceed with caution. Red is worth examining a little further before prescribing. Here is a super cool thing about the test….if the medication falls into the yellow or red color, the test details out WHY they put the specific medication into that color. For example, medication A that Q reacted so strongly to when we were weaning him off (and ultimately ended up in the hospital for 11 days) is in the “red” because “1. Serum level may be too high, lower doses may be required. 2. Use of this drug may increase risk of side effects. 3. FDA label identifies a potential gene-drug interaction for this medication.” You guys! Had we know that back in August, we would have NEVER given that medication to Q. I truly believe, had we had this information then, Q’s hospital stay would have been 100% avoided. Now, I will say, I was told this test is a loose guideline and not to be taken as the end all be all, so I’ll throw that disclaimer out there for you too.
We looked at all of Q’s medications and guess what….they were ALL either in the yellow or red columns. DING DING DING. No wonder they are not working! I am so thankful for this test. This test confirmed what I felt in my momma gut to be true. I am now able to take this packet of information and educate myself on the “green” medications and decided which steps I’d like for us to try next. I am so happy to report that we are weaning Q off of his “red” medication now (and when we are confident, we will move on to weaning him off the yellow medications). We are not attempting to replace it, at this time, until we get a baseline and get him off of this medication fully. We do not want to repeat the same mistake as last time. We also learned that several medications will interact with ADHD medications, based on a certain enzyme in his body. This is KEY information that doctors need to know when prescribing my child medications.
I feel strongly that this test needs to be done BEFORE these dangerous medications are given to anyone but especially children. I am mad at myself for not pushing for this test sooner. I would encourage anyone in a similar situation to ask about this test. If your doctor isn’t 100% on board, go to http://www.Genesight.com and find a provider who will do the testing for you.
I am in no way affiliated with GeneSight nor do I get any sort of compensation for spreading the word about their services. I truly feel like this test is a game changer for moms in positions like me. Like I said, knowledge is power. A lot of people, myself included, have no idea this type of science is available. If you’d like for me to give you more details about our results, the process, etc. please feel free to use the contact form. I’m happy to share whatever information I have! So, there ya go….
Anyone else blown away by science these days?