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New meds.

ADHDASDMama profile image
8 Replies

Hi all, We are about to start Concerta long-acting for my 6yo, ADHD and ASD. Does anyone have experience with this medication?Sleep and appetite. We have good sleep right now on Metadate but needed longer acting so switching. I can't remember the dose right now but the lowest I think.

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ADHDASDMama
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Hopesmommy profile image
Hopesmommy

my daughter very severe combination type ADHD, no one has ever mentioned ASD but recently when a Dr started asking me a number of questions I started to wonder myself about an ASD diagnosis…. But she just turned 11 on the 20Th. We have actually tried a ton of medications especially difficult at the beginning because she couldn’t swallow and she wouldn’t eat the beads in anything…. I didn’t try any meds until the end of kindergarten because I was so hesitant and honestly so scared. When i finally made the decision, we started with Adderall xr and her pediatrician was prescribing until we could wait a year and see a pediatric specialist…. We did notice a difference literally the first day but down the road I did try a few different liquids which are stimulant also and then I wanted to try non stimulant to see if it could get in her body and be able to help the same because with my daughter she was already underweight, the Adderall was affecting her weight too much to where ir was unhealthy even when not giving her meds on weekends and any days out of school. She ended up developing an eating disorder ARFID because she just stopped having an appetite, any time we would find one thing she liked, she would end up only eating that for so many days until then she stopped having an appetite for whatever food she was liking. It was really hard they tried meds to increase her appetite, etc. I always continue educating myself and when I heard of concerts I wanted to try it because it was summer break and I knew she was going to need meds for school. So I talked to the pediatric specialist who wasn’t really any help but she did agreee it was an option.. she started on 18 mg and toward the beginning they tried increasing the dose I think the next is 24mg , I noticed right away that it was too much. If there was any day that she didn’t have school but had a reason to need to focus I would give her the meds but she was just isolating and quiet so I said right away the 18 mg was enough. It did affect her appetite still but it’s gotten a lot better some days she is even able to eat lunch!! She could never do that before, and she doesn’t seem to get the irritability that she did when the adderall would wear off. The only thing is I believe it has to be swallowed because the capsule or whatever it’s called that holds the medication is some how a pump that releases different amounts throughout the day.

Honestly I’ve had enough negative experiences that we will stay with what works best, we don’t need to keep trying to find anything better at this point, I still don’t give it to her on weekends unless needed but she doesn’t seem to mind it like she did with the Adderall. I hope that helps, I am still always educating myself especially about special Ed and IEP’s if you need any help,, feel free to ask.

ADHDASDMama profile image
ADHDASDMama in reply to Hopesmommy

Thank you so much for all the info. We will start with 18mg, I want to keep it low and slow.

Klmamma profile image
Klmamma

We didn't have good luck with Concerta. It's the one medication that I did notice the kind of zombie thing. He would hyperfocus on things and not being able to stop himself. Like building Legos for 10 hours straight, but not happily doing it, more like obsessively doing it. He also had some sleep issues the third or fourth day. There's some questions surrounding the efficacy of the generics for Concerta and it was a constant issue.

Focalin has been the best for us paired with guanfacine. I wonder sometimes about ASD, but they always say no. I see it in my husband too. I will say that I have 3 friends who's ASD kids started a small dose of prozac and it was life changing. Two of these kids had AFRID and a few other anxiety issues and it helped immensely. One child was nonverbal ASD and began speaking a week after beginning. These kids do not have ADHD though, they do just have ASD.

ADHDASDMama profile image
ADHDASDMama in reply to Klmamma

thank you hon

Klmamma profile image
Klmamma in reply to ADHDASDMama

Ask the doctor first, but my son usually has issues sleeping the 3rd night of a med change or increase and we do give him benadryl that night. He requests it at this point. Doctor said it was OK as a one off type thing for this situation.

Whitecarnation profile image
Whitecarnation

Hi My son started Concerta in July. He is 19 and has experienced loss of appetite, mainly showing as not being able to eat as much, as he gets full.

I don’t think his sleep has been affected but has always had trouble waking up in the mornings and this hasn’t changed!!

Obviously, the age difference maybe a factor in what side-effects are experienced. The only other effect was headaches for the first week.

Knitting20projects profile image
Knitting20projects

Our son with ADHD + Level 1 ASD has done great on Concerta.

Elijah1 profile image
Elijah1

I works well for some children. If sleep is affected, give it 1-2 weeks to see if this goes away.

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