Confusion

[lopsidoodle]

My son was diagnosed with ADHD 1 year ago. He is 12. We tried stimulants with little effect and increased dosage and his mood was awful. Just lost all joy and never smiled. We then switched a few months ago to to a non stimulant Intuniv. He tried 1 mg then 2 and now is on 3. We see a therapist like most on this forum. I have no idea what to make of anything. He is like many at a loss for time and moved like a turtle. He does sport, has decent grades, socially could be better. Mood is so terrible...not sure if meds or puberty half the time. We have been making huge efforts but there is a lot of fighting in the home. It's tough. So confused I have no idea what to make of the medication. School says nothing, he seems clueless and honestly have no idea. Is it possible meds are not for him? How do you get your child to at some point take a bit of responsibility. He is not nice to us...he is so moody... it's exhausting we follow him around every step of the way.

[WYMom]

Well, my daughter is not in puberty yet but it's close. I have strong personal boundaries. I will not accept the kids treating me poorly. As we've excessively enforced emotional coping strategies I have every hope it helps. Time will tell. Puberty sucks with neurotypical kids so I can't imagine how it is for ADHD kids.

[Mamamichl in reply to WYMom]

As a kid with undiagnosed adhd until I was 38, puberty was an extremely emotional time. I did well academically, but socially I felt right with the special Ed kids, where I created the clique. I wish I had been taught emotional coping strategies.

[marinecyan]

Medication is not for everyone. Many of the symptoms of ADHD are driven by genetic mutations that reduce the body’s ability to absorb or utilize nutrients. We’ve taken a nutritional approach with my previously very moody, irritable son (10 yo) and have had a lot of success.

If you’re interested in exploring nutrient supplements for ADHD, there’s a great book called Finally Focused by James Greenblatt, MD. The other big factor for my son was the results of a genetic test through Genomind (it’s just a cheek swab) that indicated my son has a mutation in the gene that converts folate to its active form (methyl-folate). The results include information on many genes and also indicate which medications may or may not work for your child.

My son now takes a prescription methyl-folate multivitamin called EnLyte which has changed his baseline from irritable to happy. You can find over the counter multivitamins like Junior Nutrients (Pure Encapsulations) with methyl-folate.

[lopsidoodle in reply to marinecyan]

Very helpful I will explore genomed this weekend when I have some down time thank you !

[Mommyest2015]

I also paid for Genomind and it was very valuable to have the knowledge of which medication works/doesn't work for my daughter. They also have a sliding scale for payment if you can't afford it or it's not covered under insurance.

[MomofTwin in reply to Mommyest2015]

Hi- how do you go about obtaining Genomind? Searching the website everything seems geared towards medical providers. Do you need to go through a doctor to prescribe?

Our doctor is good but a bit old school.

How much did it cost?

On the website it mentions $399 but also contact your insurance provider.

[Mommyest2015 in reply to MomofTwin]

Our pediatrician had referred us to a therapist called Blackbird (they offer virtual appointments) and they gave me a script for the test kit. It comes in the mail and you swab your child's cheek and mail it back. I then filled out Genomind's patient assistance application since the test wasn't covered by insurance and I qualified to pay $150.

You can possibly get the test on your own, but the results are very scientific and having a therapist, provider or pediatrician go through the results with you is highly recommended.

[simplething]

Hi there,

My son is also 12 and was started on INTUNIV Extended Release about 18 months ago.

He responded so well to 1 mg however when the doctor started increasing the dosage as per the manufacturer's suggestion, he too became very moody. He commented that he felt like he was walking in a fog and not in control of himself. We brought him back to 1 mg and is so much better. Note too that the Extended Release is also easier to tolerate. It did take a few weeks for the drowsiness to pass. He takes it first thing in the morning.

Interestingly, my son forgot to take his Intuniv yesterday.....wow, what a different child. After only missing the one dose, he was like a winde up toy out of control!

You mentioned he is involved in sports, academically doing well and socially could be better. Sounds all similar to my son. His executive functioning is always something we are going to have to help with but even there, we have seen great improvement and most of his teachers say he is improving. Sleep is very important to help my son. I bought him a fit bit that I track his sleep with. All screens, computer games and no cell phones, tv or computer use at least 1 hr before bed has made a huge improvement. At 12, we can still control some of this...best to start early. Also, if you can talk to him and help him understand ADHD and how many people have it and cope with it it will help him and you not to feel so isolated.

[lopsidoodle in reply to simplething]

You are right about the sleep, it's make or break the day. Same here with executive functions...i cannot however say that i am seeing improvements it's hard to say, i mean maybe yes? Nothing major but i remember a skipped dose and there was a big difference. Do you stop taking meds during the holidays? Wonder how that goes. I know with stimulants you can stop for a break and forgot to ask my GP about Intuniv. I would not ant to go through the drowsy effect all over again that was tough for him. Thank you for your post!