Genetic testing for right Meds? - CHADD's ADHD Pare...

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Genetic testing for right Meds?

SurvivorFan profile image
SurvivorFan

Hello,

Curious if anyone has gone down the route of doing genetic testing to see what meds work best for their child? My son currently is on Ritalin ER in am and then an immediate release at 3pm. This seems to be working pretty well for him but we think he needs to probably be on something else also to help with his anxiety. This started before starting any stimulant so can rule that out. He has pretty severe social anxiety and bedtime is rough. There is also some sprinkling of odd fears (bugs, going to different room by himself, ect.) Terrified to be in his bedroom even with his brother in there with him. He will have nightmares frequently when in his room. And yes have tried ALL the things. Special lights, sleep stories, weighted blankets, weighted lovies, door open with hall light on, soft music, melatonin...The fast acting ritalin seems to be totally out of his system by 6pm.

Anywho, we have a follow up soon with his neurologist to see about adding on something to help. When trying to research it seems an anti depressant might be the way to go but also have seen things like clonidine or guanfacine? I would like to avoid a long guessing game and see if others have really seen benefit from doing the genetic testing for meds.

16 Replies

Thanks for sharing your situation with us. While I can't comment on the medi ation testing I can say we have had great success on guanfacine with Ritalin. He take 2 extended release to make it though the day and at bed time he takes the guanfacine as a 24 hour dose.

You didn't say the age of your child.. just curious.

One of the positive effects of guanfacine is help with sleep.

If your child is under the age of 10-12 I wonder if you try to " get energy our before bed so he is tired if this will help.

One last thing, have you worked with a Psychiatrist? They are very skilled in dealing with medication. We have had great success with this type of Specialiat.

Best of luck

Thanks for reply! My son is 6. Just about every night when short acting ritalin seems to be out of his system (6pm) he gets high energy so plays quite a bit during this time. Him and his younger brother love to dance so often they do "dance parties" in the living room to dance/club techno music 😆 He has some quite cartoon time after this with the last snack/meal of the night. You would think this would tire him out. Does your son also have anxiety? When we see his neurologist I plan on asking for a referral for a child psychiatrist. From what I hear its going to be a long wait to see someone so would like to atleast try to get a start on something before he goes off to kindergarten. His current teacher is wonderful and understands what his baseline is now so would be great to get her feedback while we can.

Thanks for the reply. I think all children with ADHD have some form of Anxiety. I just think of it what impacts his life the most. For us it is focus and impulse control. Honestly, we did not see success until working with an amazing child psychiatrist, who knew what medications would help him the most. They specialize in medications and they know it is trial and error. I was so worried about him remembering all the different medications we tried. But when I asked him how much he

remembers he said nothing.

When we saw his thearpist in the past we discussed anixeity and we both agreed it is connected to the ADHD and minor.

The tired our son is the better he sleeps and yes he has a lot of energy as we are all winding down. But we let him go outside or run on the treadmill even if it is 9pm.

Our kids "run" differently than Neurotypical kids.

Good luck finding what works.

I hope we can be connected to a knowledgeable psychiatrist that can get us on the right path. Thanks again!

Yes! We searched for over a year with our daughter’s psychiatrist for the right medication combination for our young teen daughter who has adhd and social anxiety disorder. I highly recommend working with a child psychiatrist. They are the most knowledgeable in this area.

He gave her the Genomind genetic test and it opened up his view to what would work for her. She had been having bad symptoms with everything we tried. He ended up prescribing a SNRI rather than an SSRI. Cymbalta proved to be the best for her (after it was well into her system 6-8 weeks).

After getting that right he changed her adhd medicine from Focalin (which didn’t seem to do anything) to Vyvanse. For her, this combination worked well and it all started with the genetics test so I definitely recommend it! He did have to split her SNRI dose because she needed quite a high dose but all at once it was still a bit harder for her to tolerate. She takes half in the morning and half before bed along with Efolate to help with the uptake.

Bedtime meltdowns improved. Anxiety overall felt like a blanket had been thrown over it. We held our breath. She was much more steady! He also prescribed Trazodone for sleep because we had exhausted the long list of things to try and nothing had worked (cool room / melatonin / magnesium / no screens / lavender / neurobiofeedback / sleep study / relaxation apps).

I hope this helps!

Thank you for your reply! I'm so glad to hear that the genomind testing helped your family out. I think its amazing this is available. It can be so overwhelming trying to research all the different meds and combos. He is doing so much better at school and home being on the ritalin and I dont want to take steps backwards choosing the wrong med for the anxiety. I have a niece who also does trazodone at night and has worked wonders for her. We recently did sleep study and then tonsil/adenoid removal due to apnea. Was really hoping that would solve some of the issues but have not seem much of an improvemnt.

We did pharmacogenetic testing via Genomind at the request of our Dr. it was the best thing we could have done as it pinpointed how my son would react to different meds - we were able to put him on 10mg of Ritalin ER right away without any guesswork and he is doing well. Good luck!

We got my son tested through GeneSight at his pediatricians office. Then the psychiatrist said they mainly used the results to determine how quickly the person metabolizes medications. Adderall was supposed to be a good med for my son, and it was horrible for him. We ultimately found success with broad spectrum micronutrients recommended by the psychiatrist.

I’ve just started taking Ritalin ER. I started with 20mg and felt like it wasn’t working so Dr. bumped to 30. That actually ignited my feelings of anxiety.

That is something we should definetely keep in mind. He had some signs of anxiety last summer before starting the Ritalin but its hard to know what is just from him at this point and what could be due to the stimulant.

We did genetic testing on our daughter after trying numerous stimulants with side effects. We worked with our pediatrician for a couple of years then I decided to go to a child psychiatrist at the children's hospital and the psychiatrist suggested the testing. The results were confusing to me but the doctor said the results indicated that most stimulants would be ineffective for my daughter, however, of all the stimulants vyvanse might be somewhat effective. The testing actually suggested the nonstimulants to be most effective but we have not tried those because it takes 6+ weeks see if they work and if they dont, you have to slowly wean them off the nonstimulant. So, we tried the vyvanse and it has worked quite well with fewer side effects. We also added quafacine in the evenings for the big emotions over that she experiences when the vyvanse wears off. IMO the testing is one more piece of information that might help narrow down an effective medication but its not a definitive answer.

SurvivorFan profile image
SurvivorFan in reply to denak2

I'm sorry you guys all went through such a long road. Its all so tiring and all the while your hoping for things just to be easier for them in life..and the family. When we put ours on the ritalin ER it worked better during the day then the fast acting but he also had the big emotional crash around 4pm. We added on a short acting at 3pm that did help ease him off but its out of his body by 6pm so still have some melt downs after this time but not as bad.

My son did the Genesight testing at age 4 when he was first diagnosed with ADHA; he's now 7. The report categorizes each of the medications into a stoplight report (green = effective; yellow = somewhat effective; red = not effective) for the patient. At that time, we were on the fence about starting medications due to his young age and our desire to manage it with other interventions first.

The report for my son showed almost all medications in the red zone, and only 2 in the yellow. I was so confused, but our pediatrician explained that the medications are like puzzle pieces that either fit or do not fit well with the receptors in my child. At that time, none of the medications on the market would provide a good "fit" for him. So we decided to hold off for about a year before trying meds. When we did start, the pediatrician recommended Focalin XR (one of the 2 in the yellow zone), which we have increased the mg over time and added a mid-day booster. I think it's been working well for him, but we are considering exploring adding Guanfacine to help with self-regulation and impulsivity. I don't know if we just got lucky in that we have not played the guessing game with meds yet, or if there could be another option that would be more beneficial. Time will tell....

Not too long ago, I was made aware by our pediatrician that Genesight no longer offers the test panel for ADHD medications. And then, I received a bill in the mail from them saying that my insurance was billed and denied, and that I owed $6,200. The test had been administered over 2 years from the date of the letter and the carrier they billed is no longer covering us! I never paid the bill and have not received any more communication from Genesight.

I was extremely intrigued about this genetic testing early on, then puzzled by out personal results, and now I'm not sure I believe it's even worth doing.

Wow that is awful! Im sorry you had such a horrible experience. I was kind of wondering why if it was such a "game changer" its not talked about more. Seems to be good and bad experiences..

ADHD medications are currently prescribed in a trial and error manner. A child is given different medications until the right one is found. This approach although effective in the long run is not ideal for the child who may have to face various side effects from multiple drugs. Pharmacogenomic testing to find the ideal drug to manage ADHD symptoms is not a novel idea. However, its role and efficacy in ADHD managment is still being studied in multiple clinical trials. There are free services like centrial.org that helps patients find and take part in clinical trials near them. Sony Sherpa, MD

Thanks that helps a lot. For us it was not bad. When I recently asked our son, who is 14 years old if he remembered being on different medications he said nope..

The worse side effect he had was urinary incontinence. So we switched and found what works the best and have not made any changes for over 5 years.

We just kept positive and knew in the end we would be successful.

Good luck!

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