Advice for genetic testing to help find the right ADHD meds?

[BlueStripedMama]

Hi! My 10 yo has ADHD and we have struggled to find a medication that works for her. I am interested in how the gene testing works from people who have done it. A few specific questions: 1) how did you actually do it? (e.g., where did you get the test, where did you send it, etc); 2) how much did it cost; and 3) are you glad you did it? Did it help with med choices and adjustments? Thanks so much for sharing your experience!

[MOTORMOUTH_ADHD_ODD]

I didnt even know there was such a thing!!

[Mamamichl]

hi! I have done it for 3 people in my family (partner. Me and my daughter). My partner was the first one. It was so beneficial for him we did me and daughter. My partner was having extreme side effects from the ones he was taking. He is on a med that usually wasn’t prescribed by the doc but that was the only one that had little side effects for his genetics.

As for the details. We just asked our pcp/main doc. They generally have the kits available and can do it on a regular appointment. It is basically like a paternity test. It swabs the inside of the cheek. It almost costed me $5,600 until insurance covered it. It won’t tell you which med will work for the ADHD, but it tells you what meds will affect your liver/system negatively. It will say which ones will have adverse reactions to the system and how extreme the reactions are, but it won’t say what reaction you will get. So far, the reactions were the ones on the list that is with the medication.

It helped us with what meds to try first, though I’m on a med with mild adverse reactions and I am totally fine with it possibly giving me higher blood pressure because I have low blood pressure otherwise. You just have to weigh the situation. It’s nice to be able to make an educated guess rather than randomly picking. Most people do go through an average of 4.5 meds to find the right one for them. I think I went through 6. My daughter has tried 1 but we did the gene sight because she started getting tics on that one. Definitely don’t be afraid of the ones with side effects though. For me, I tried the ones without side effects and they didn’t help my adhd. The one that does help for me is a non stimulant.

Hope this helps. Feel feee to pm me. I can send you a pic of what it looks like too. Zen hugs 🫂

[BlueStripedMama in reply to Mamamichl]

Thank you so much for this insight -- it helps a lot to know where we might start and if you found it helpful!!

[Mamamichl in reply to BlueStripedMama]

It wasn’t as helpful for me, but it was great for my partner. What I like is it tests all mental health meds: anxiety, depression, psychosis, etc. I am trying to get my doctor to prescribe anxiety meds for my daughter, but she’s old school.

[Aspen797]

Our pediatrician ordered it. Genesight testing was not covered by our insurance—it costed about $300 out of pocket. It provided a lot of good info about medications that are most effective or to be avoided. It also provides info about your child’s ability to process nutrients and how quickly or slowly things pass through. With a bit more reading on each of these you get a lot more information that can help you keep your child healthy in the long run too.

[BlueStripedMama in reply to Aspen797]

This is so helpful, thank you! And $300 is so much more manageable than other numbers I have heard...