End of my rope

[adoptivemom]

Hi!

I have been on here for a while and really appreciate all of your posts and comments. I have read so many threads and learned so much from all of you! And to be honest, this journey is lonely and I don't have any IRL friends who get it. There is a lot of comfort in not being alone.

My son is 8 with ADHD, anxiety/depression, PTSD and mood issues. He struggles with anger, self control, attention, and executive function (among others). Like many here we have tried all kinds of medications.

The stimulant meds (Ritalin, Adderall generics) didn't really help all that much but when they wore off it was absolutely horrible. The rebound effect left him banging his head, screaming, crying, scratching and uncontrollable for over an hour.

So we moved to the non-stimulants. Strattera (atomoxetine) takes 6 weeks to build up to efficacy, and as we hung in there for those weeks he got worse and worse. Mostly afternoons he was so irritated and acted out. His behavior kept escalating - cursing, lying, defying teachers, and just so angry. It got to the point where he was talking about suicide - and I said enough! We got him off of that and are now taking a break from new meds.

His "normal" medication routine is ariprizole and clonidine at night, which he's been on for 1.5 years (he sleeps well!) and fluoxetine in the morning (30mg) which we added in July. The fluoxetine was immensely helpful in the beginning - he was so calm and happy! I was relieved and optimistic. I should have left it alone there, but the school wanted him to focus and step up his academics (he's a grade level behind) so I started back on the ADHD med path. It's been awful.

So, my current plan is to get the genetic testing done. The cost is still cheaper than what I've spent this year on "med check" appointments with the Dr and medications that don't work for him (but we paid a lot for!).

My QUESTION is ; who had done the genetic testing? Was it actually helpful? Which one did you do? genesight? genomind? A different one? Any feedback would be really helpful!! I am adding some nutritional supplements - and want the genetic test to let me know about the MTHFR gene as well.

I feel so overwhelmed trying to navigate all of this. Those of you who have found a good combination of meds and are seeing progress for your kids have given me hope to keep trying. We are also in the process of getting some more therapy. We saw a great Dr and had a behavior coach before we moved a year ago, but have not found someone here. The school PhD behavior specialist will be meeting with our son soon, and will us feedback, suggestions and referrals that I hope will help us at home. We have a good routine and schedule and I am trying to be firm and consistent. I am sure there is a lot of room to improve but would love a little peace and a season of stability and serenity.

Thank you for reading. I appreciate it!!

[Imakecutebabies]

So sorry he's struggling so much with the medication journey. I haven't done the genetic testing but this post from awhile ago popped up:

healthunlocked.com/adhd-par...

[adoptivemom in reply to Imakecutebabies]

Thank you! I looked at that thread before. It helped me decide to ask for the test. My Dr is working on it-so it'll be a few weeks I'm sure.

[arrh121]

We did the genesight testing, which said a little bit about our son’s (8yo, complex ADHD and some behavioral issues) sensitivity to different medications and helped a little bit with deciding on the right dose with his psychiatrist, though it wasn’t a game-changer by any means.

We ultimately found a combo of guanfacine ER and atomoxetine were best for our son (stimulants didn’t work for him). He is doing much better now though still has plenty of challenges.

[adoptivemom in reply to arrh121]

Thank you. Guanfacine is one I'd like to try with my son. I'm glad the test helped you a little. I'd be hypo even just rule out some or maybe have help with dosing? My pediatrician has been pretty cooperative but it's feels like a puzzle that gets more complicated as I go along! I'm glad you've found something that helps. I am not expecting a miracle but would love to be able to relax a bit while he's at school. It's egg shells all of the time.

[Crazyboymomma]

Hi. I’m so sorry you’re going through it all. I know the exhaustion and defeat so well. I feel like my son (12) has been on a million different combinations. My biggest piece of advice would be a child psychiatrist, if you don’t already have one. We have a fabulous ped who was willing and mostly able to manage my son’s meds, but it just got to be too much. They all have to be so finely tuned! I was lucky to find a great child psych via a referral and he DID mention the genesight testing. Our amazing ped mentioned it too. Attomexotine has helped my son, but only as an add-on. He takes Azstarys. He also takes fluoxetine which has been huge! I say go for the genetic testing, and get a referral for a child psych if you don’t already see one! They are so good with the meds! Best of luck. ❤️

[adoptivemom in reply to Crazyboymomma]

Thank you! We had a child psychiatrist before we moved who helped us get to the baseline meds he currently takes. We did a lot to trial and error with her too before we moved. I'm not convinced his current meds are the best but it doesn't seem to be hurting so I haven't messed with them- but haven't found a child psychiatrist here yet. I will look into that too. I'm frustrated with this whole process. So many failed attempts-I hate making him a guinea pig!!

[Crazyboymomma in reply to adoptivemom]

The fact that I always feel like my son is a guinea pig is what kills me the most. I think that’s where the genesight would be great. You should have an established psychiatrist to interpret the results, they will be the best at it. Good luck. It’s so hard when you move! 🫤

[adoptivemom in reply to Crazyboymomma]

I totally agree. It's somewhat reassuring to know I'm not alone. I just want to find a combination that will help my son. He's so resilient and willing to try new meds - I just hope the bad experiences are forgotten as he gets older. He has so much potential and I recognize he's not willfully ignoring instructions, it's just such a challenge. My heart hurts for him and I try to remember that compassion when he's driving me batty! Thank you again for your reply! It means a lot! 🥰

[Mamamichl]

hello! My partner, me and our daughter have all had the gene didn’t test. It was amazing for my partner, who had anger issues like you are describing. He learned all of the stimulant meds except vyvanse would have moderate side effects. He also takes a dextroamphetamine mid day. It has been helpful for me, though the med hat works for me is stratera a non stimulant.

We have been having trouble getting my daughter’s doctor to prescribe her medications because the doc is old school thinking. The first med she tried before the test ended up as moderate reactions and she started having tics. Basically he gene sight test will only tell you if you will have base side effects on a med. it won’t tell you which med will work for your kids ADHD symptoms. Though it’s been quite helpful for us, it just gives help where to start.

[adoptivemom in reply to Mamamichl]

Thanks so much! I am up for any help from the test. We've done trial and error and found some things but I'm hoping it'll help us find one that he will actually respond well to. I appreciate your feedback and sharing your experience!!

[eva2022]

Hi, there. My son is 8 as well with ADHD and ASD.

We had genetic testing done. It didn't help us except to make sure that we weren't missing an additional diagnosis and the knowledge that my husband has the same genetic mutation as my son.

Our biggest help has come from being able to see a developmental pediatrician. They have two additional years of training in neurodevelopment disorders.

I'm sending you encouragement. I also find this community to be so helpful because none of my friends have neurodiverse children.

[adoptivemom in reply to eva2022]

Thank you! I really appreciate that! I should look to see if there are any developmental pediatricians in our area. Good suggestion! I also suspect my son is on the autism spectrum but we have not had him tested. I appreciate the encouragement and that others genuinely care and understand!!🥰

[MinnMom]

My son is 14 with ADHD and ASD (and perhaps PDA profile within ASK). I'm not sure what specific genetic testing we had done for our son, but his results showed that 1) his metabolism is normal which means that "standard" dosing should be effective for him, and 2) there weren't any meds that were ruled out as not being effective for him. He's currently on adderall XR, adderall immediate release, fluoxitine, and clonidine at night. We increased his adderall dose quite a bit earlier in the spring since he was reporting that he couldn't focus as school. But he lost 13 lbs in 6 months, so we scaled that way back. I honestly don't know how much meds are helping or not. We've been seeing a pediatric psychiatric nurse practitioner for 4'ish years. I got an outside review by another pediatric psychiatrist perhaps a year ago which felt good just to get a fresh set of eyes on what we were doing.