Tl;dr - ADHD moms - can you chime in as to what made you decide for/against medicating your little one? Were you and your partner both on the same page about medicating? If not, how did you reconcile these differences?
My story: DS (turned 5 in Oct) has always been tough. Impulsive, difficulty regulating his emotions, HIGH energy, etc. His impulsive behaviors have been a problem at daycare for a while now (and almost got him kicked out). Injuring himself and others, not maliciously, but because he just doesn't think things through. Pushing over a chair when he's frustrated. He has difficulty concentrating on the boring things, but shows hyperfocus in areas of interest. This all led to a neuropsych eval (Nov 2017), that ended in an ADHD-combined diagnosis. As DS was only newly 4 at the time of diagnosis, we were not open to medicating. Daycare has been helpful in offering sensory breaks, letting him stand or wiggle while completing work, offering small rewards for completing difficult tasks, etc. But everything we try has only offered very short term improvement.
Just yesterday, DS had another rough day, resulting in us needing to sign an incident report. While putting him to bed, we were talking a little more about his day (I find our discussions are better one-on-one at bedtime, instead of dinner or the drive home. He can focus more without the distractions of his sister/food in front of him/etc) He was almost crying and said "he's the only friend in his class that has bad days every single day" and he feels badly because "good days just don't work out for him, even when he tries" (his words).
So what we've been doing just isn't working and it's breaking my heart that he feels so badly and is aware how much he's struggling.
I'm at the point where I want to try meds. I originally hoped we could hold off until we were in school and it was interfering with his grades. But I feel like we're doing him a disservice by not medicating at this point. I'm trying to see it as a tool that will help him in conjunction with our other behavior modifications. DH is not quite on board, but doesn't have any other suggestions at this point either. We suspect DH has ADHD as well, but he seems to figure that he's been able to work through the challenges on his own without meds, so DS should too. Also, due to his line of work, he's encountered many kids that have been over medicated. So his main argument to not medicate is that he doesn't want DS to be a zombie. Which, (in case it needs to be said) I don't either.
Our pedi would be prescribing, her preferred med to start with at this age for his impulsivity are Guanfacine/Intuniv. We have an appointment scheduled to discuss starting the meds/addressing DH's concerns.
What questions would you ask at this appointment? Possible side effects? (Low blood pressure? Loss of appetite?) Growth Concerns (he's pretty short, but 50%ile for weight) What should we expect to see if the meds aren't a good fit/dosage?
Post by hopecounts on Feb 20, 2019 14:16:06 GMT -5
My daughters Ped Psych said safety issues were a huge reason to medicate and the only reason he will prescribe before age 6.
It sounds like your son may be in that category where the safety concerns make medicating a necessity.
We started meds at 6 because her impulsivity got worse and was causing safety concerns and interfering with learning and social skills.
Medication has turned her life around, she enjoys school, doesn’t hurt friends accidentally (impulsive jumping or running and banging into them was a big issue) so she is so much happier.
She is on clonidine a non-stimulant that worked best on her impulsivity
We had to try 3 meds and numerous doses to get it right but once we did it was amazing
DS was clearly struggling and it was obvious he couldn't keep himself in control-he was a danger to himself and others. He still has his moments, but his meds make him a much more enjoyable person all around. He has his bad days (like yesterday) but there was tremendous growth academically (he wasn't behind, but he literally could not focus) and socially.
DS is on Guanfacine XR and Adderall XR, we started on Focalin. Focalin zoned him out. Focalin decreased his appetite, now his appetite on the Guanfacine and Adderall is back to pre-med days.
XH and I had no conversation about medicate vs. don't medicate. We were on the same page.
In order to see if meds are working, you need to give it at least 6 weeks. The Guanfacine takes time to build up in their system. We were told to expect 21 days for the build up. We actually went to 2mg today because we are seeing no difference in the impulsive behaviors.
When you're at the appointment:
-What are the pros/cons to stimulants vs non-stimulants? -What are the side effects that we need to look out for? -If the generic isn't working, will you be willing to assist with getting the name brand covered by insurance (if this is an option)? -If you can get your hands on it, get a list of covered medications from your prescription insurance provider. I brought this and it was incredibly helpful to the doctor-they were sympathetic to the costs of medication. -What else do I need to be looking at to help my child be successfuL?
I have been incredibly open with DS about why he's taking medication. We had this conversation again this morning when he realized he has 3 pills instead of 2; the medication helps slow his brain down so he can make good choices. He is learning to control and evaluate his choices before the impulsivity kicks in. We talked about while he's taking his medicine, there are a number of people working to help teach him how to make good choices so that some day he may not have to be on all of the medication. He knows that medication may always be a fact of life and struggles with being "different" (he knows he has a harder time calming down than others, he gets in trouble more, and so on), but I also have talked with him about the fact that with his brain running SO fast, he's able to do a lot of things others his age can't (like do an absurd amount of math in his head, etc.).
If you get down the road and you're having these conversations, Dav Pilkey, the author of Captain Underpants and Dogman, was diagnosed with ADHD and dyslexia as a child. DS loves the fact that an author is "just like him" (DS doesn't have dyslexia though) and sees how successful he has become.
DD (7) was recently diagnosed with inattentive type. We started Vyvanse about a month ago and saw an almost immediate, positive impact. We're still figuring out the proper dosing. We started at the lowest possible dose and give it at least a week to evaluate whether it's working. Her mains issue are focus and inattention, which affect all areas of her life. She is so much happier and confident now that she's not so lost in her own head all the time. Her school work has greatly improved, she can focus on tasks at home, and she can better engage with her peers. We were especially surprised by the social aspects and didn't realize much she was struggling. It was impacting all of her relationships.
We were both against medication, but I came around before H did. I recognized how many things we were already doing to help her with little success. H was very against medication. We both have ADHD tendencies and probably should have been diagnosed as kids. His attitude was that she didn't need medication because we both managed just fine.
As he learned more, he became more open-minded. Meeting with the pediatrician helped (we had already met with her teacher and school psychologist). The pedi said several things that helped change his mind: 1. The best outcomes come from a combination of medication and behavioral interventions and said that we've already done many behavioral interventions without much improvement. 2. In her experience, leaving girls with ADHD untreated always leads to secondary mental health issues like low self-esteem, depression, and anxiety. and 3. She kept reiterating that this has always been there and will always be there, whether we choose to medicate or not. She normalized it a lot and said there was little risk in trying medication and then stopping if we didn't believe it was worth it. We're both glad that we decided to try medication, because it became clear just how much she was struggling without it.
There are side effects that suck, but we've been able to mostly counteract them with some adjustments. Her appetite is non-existent when she's on meds and she's lost weight. We push big breakfasts, lots of water, and high protein snacks. She has had sleep issues, significantly worse with a new or increased dose. The insomnia improved after about a week, but it's still really important to keep good sleep hygiene. She also crashes in the evening when the meds wear off. It's hard to tell if this is from the meds, or from not eating and drinking as much as she needs throughout the day. Probably both.
For us, the benefits are worth the side effects. Hopefully this continues. It was a really hard decision for us to make, but I'm glad we did.
arch01, (I just realized who you are since your tag is different than the name. I rememeber some of your past posts about your DS and think our boys sound similar!) Thanks for the input. DS and I just read his first Captain Underpants book over the course of a few nights at bedtime. He loved it - good to know about the author. That will be helpful to bring up when he starts asking more questions about why he's acting differently than friends.
You mentioned Guanfacine, which is what the pedi wants to try. You mentioned needing the 3 weeks build up in the system. So is this a medicine that needs to be taken continually to have the desired effect? I ask because I'm in an ADHD parenting FB group that had been mentioned here on GBCN. It seems that so many of the parents choose not to medicate over the weekend/vacations. I would think the Guanfacine would be more effective if given continually vs start/stop depending on the day. Do you skip days/weeks or give continuously?
-What are the pros/cons to stimulants vs non-stimulants? -What are the side effects that we need to look out for? -If the generic isn't working, will you be willing to assist with getting the name brand covered by insurance (if this is an option)? -If you can get your hands on it, get a list of covered medications from your prescription insurance provider. I brought this and it was incredibly helpful to the doctor-they were sympathetic to the costs of medication. -What else do I need to be looking at to help my child be successfuL?
I have been incredibly open with DS about why he's taking medication. We had this conversation again this morning when he realized he has 3 pills instead of 2; the medication helps slow his brain down so he can make good choices. He is learning to control and evaluate his choices before the impulsivity kicks in. We talked about while he's taking his medicine, there are a number of people working to help teach him how to make good choices so that some day he may not have to be on all of the medication. He knows that medication may always be a fact of life and struggles with being "different" (he knows he has a harder time calming down than others, he gets in trouble more, and so on), but I also have talked with him about the fact that with his brain running SO fast, he's able to do a lot of things others his age can't (like do an absurd amount of math in his head, etc.).
If you get down the road and you're having these conversations, Dav Pilkey, the author of Captain Underpants and Dogman, was diagnosed with ADHD and dyslexia as a child. DS loves the fact that an author is "just like him" (DS doesn't have dyslexia though) and sees how successful he has become.
These questions are great. Our pedi gave us a list of her 6-9 preferred drugs. She preferred the long acting medications. Our insurance only covered 2 of the meds on her list. I have a follow up appointment scheduled to check-in and I will ask her about more options. Vyvanse seems okay, but the insomnia and lack of appetite are challenging. I'm under the impression these are pretty common for most ADHD medications.
We are also very open with DD. Being new to all of this, I appreciate your anecdotes and book/author recommendations. We need more resources, so thank you.
My kid does not have ADHD, but anxiety, and is medicated. Like you, she has always been different. Even at 2-3 years old she was different, now I realize she was anxious. I hope you don't care that I'm responding, but I figure the decision to medicate a kid is still a similar decision, no matter the diagnoses.
Her anxiety appears in frustration, anger, outbursts, temper-tantrums, high emotions, negativity towards herself, etc. She also is a very scared kid and felt like people were following her, etc. At age 7 we started weekly counseling sessions. This helped marginally, but after a year of counseling we opted for a med eval. My DH and I were not on the same page, that's one of the reasons we waited a year. It got to the point where her anxiety was interfering with her life, and our family life. Her behavior was a constant disruption, we were all fighting, she was becoming aggressive, etc. Medicating her was 100% the right decision to do. Within a month she was a different kid. She is still anxious, but she has more good days than bad days and her behavior has far improved. Just last week we upped her meds because her anxiety was creeping up and some bad behaviors (for her physical aggression) was coming back. But it is still no where near what it was like last year without meds.
I wish you the best of luck. It is not an easy decision.
kdubs923, haha yeah, I changed my display name since the divorce due to some search capabilities. Sorry for any confusion!
Guanfacine does have to be taken continually because of the build up in the system. The Adderall doesn't, but DS isn't at a point where he could take breaks. He is so out of control off meds it's insane. My memory is a bit fuzzy right now, but it may be a stimulant vs non-stimulant thing.
zarapipe, DS also has anxiety and it presents in anger, outbursts and frustration. Counseling didn't get us much of anywhere, but now we're being referred back to EC through the school for some more intense behavior therapy. We'll see what happens. It's interesting because we have had 2 or 3 incidents since school has been back in session from winter break, but apparently they are seeing that as a problem and "not grade level appropriate". I'm all for the additional intervention because I will take what I can get-but I'm curious to see if something more intense helps with the emotional regulation. We've at least made progress and he isn't hitting kids anymore when he gets anxious...
So glad things are working out better for T zarapipe ! You're right - deciding to medicate is difficult, regardless of what you're trying to treat. Extra feedback is always welcome
These questions are great. Our pedi gave us a list of her 6-9 preferred drugs. She preferred the long acting medications. Our insurance only covered 2 of the meds on her list. I have a follow up appointment scheduled to check-in and I will ask her about more options. Vyvanse seems okay, but the insomnia and lack of appetite are challenging. I'm under the impression these are pretty common for most ADHD medications.
We are also very open with DD. Being new to all of this, I appreciate your anecdotes and book/author recommendations. We need more resources, so thank you.
Any time! If I come up with more, I will definitely post them. I have a list of kids books somewhere that we got from the developmental pedi. DS has responded very well to identifying the pros of his ADHD because he can get so frustrated with "not being normal" as he puts it. It has helped him when I explain things he can do that I can't to see the ADHD as a benefit, not a hindrance. The doctor explained it to him as his brain was a race car zooming in and out of traffic, not always looking while it changes lanes, so the medication helps his brain follow the speed limit and be more careful. XH has warned me though (he has ADD) to not let him use his medication as an excuse for poor behavior-he did this as a kid. That has been a conversation I have struggled with with DS. I've recently settled on the fact that no matter how small it is, he does have some control over his behavior, with or without meds. He was using the excuse of his medicine must not be working to try to get out of trouble. We just had that conversation last week for the first time.
arch01, Our pedi did a really good job of spinning it positively with DD. H and I recognize that we need to get over our own stigmas and treat this as just another part of her, not the root cause of everything. I feel like her teacher hyper focuses on it sometimes and attributes everything to the ADHD vs. just her personality.
Ah yes...the excuses. We're constantly pushing DD to drink enough water throughout the day. Her water bottle comes home full most of the time. Last week when I asked her why she didn't drink her water, she replied, "I was just too distracted by learning!" I laughed at the quick thinking, but told her that distraction can't be the excuse for everything. We have since added a rewards chart for finishing her water and (big shocker) she's drinking it more often.
Has anyone else been diagnosed as an adult after going through this with their child? Learning more about ADHD to help DD has been really eye-opening with regard to my own experience.
Post by hopecounts on Feb 20, 2019 18:17:31 GMT -5
Most non-stimulants need to be given continuously but they also usually don’t cause growth or appetite issues so there isn’t a real need to take a break.
With stimulant meds breaks can be good to allow kid to eat more and have a break from the stimulant if it impacts their eating.
Post by lolalolalola on Feb 20, 2019 18:22:43 GMT -5
DD has been on Concerta since she was 7. It was life changing for us. I never understood the anti-medication stance personally. As our pediatrician put it - would you ask someone who has bad eyesight to figure out strategies to get by, or would you give them glasses?
I could have written this. My son (Fall 2013 birthday) has had many of the same behaviors and daycare challenges. We had him evaluated in January to try to have any resources in place prior to Fall 2019 kindergarten. He was diagnosed with ADHD-combined and a learning disability and when we had him screened for OT he measured at 1% in fine motor.
We haven’t received our formal eval from the psychologists yet, but in our sit down they said current research indicates best practice isn’t to medicate until 50 lbs and my son isn’t quite there yet (I haven’t done any research on that recommendation yet). My husband and I aren’t on the same page, so it’s giving us some time to come to a decision.
All this to say, I am struggling right beside you. Whatever you decide to do, you are doing a great job advocating for your son.
Post by dcrunnergirl52 on Feb 20, 2019 18:36:21 GMT -5
DS1 has been on various meds for his ADHD-combined since he was 5.5 years old in kinder. The decision to medicate was easy when our dev pedi explained that we could do a year of various therapies to try too teach DS1 ways to control his impulsivity and not get the same results that we could see within 30-60 minutes of DS1 taking meds. And, the meds leave his system after 8-10 hours depending on the meds, and you can stop at anytime, so it's worth taking a shot.
We've had to play with his meds over the years, but initially, it only took about a week to find the right med/dose, and the change for our family and DS1 as an individual has been amazing. He's a better version of himself on meds. There is no question that it was the right decision. We do still do weekly OT therapy at school and home for his ADHD-related dysgraphia and he practices other skills (social skills, executive functioning, organization, etc.), ,but the change from that is slow.
He hasn't had any major side effects. His weight gain slowed but he was in the 99% for height and weight when we started the meds. Now he's in the 97th for height and 89% for weight, which the dr said is actually healthier for him. He has had issues with falling asleep taking longer recently but it's manageable.
I could have written this. My son (Fall 2013 birthday) has had many of the same behaviors and daycare challenges. We had him evaluated in January to try to have any resources in place prior to Fall 2019 kindergarten. He was diagnosed with ADHD-combined and a learning disability and when we had him screened for OT he measured at 1% in fine motor.
We haven’t received our formal eval from the psychologists yet, but in our sit down they said current research indicates best practice isn’t to medicate until 50 lbs and my son isn’t quite there yet (I haven’t done any research on that recommendation yet). My husband and I aren’t on the same page, so it’s giving us some time to come to a decision.
All this to say, I am struggling right beside you. Whatever you decide to do, you are doing a great job advocating for your son.
Hugs to you as you navigate this road, too.
I'm going to ask about the 50lb thing when we meet. Thank you for mentioning it! DS is only about 43 lbs.
DD has been on Concerta since she was 7. It was life changing for us. I never understood the anti-medication stance personally. As our pediatrician put it - would you ask someone who has bad eyesight to figure out strategies to get by, or would you give them glasses?
Good luck!
I think you said this to me when I posted awhile back. It was helpful for putting things into perspective and I shared that example with H. We’re not anti-medication, but do tend to try non-medication options first. With this, I felt pretty confident we were doing everything we could for her already with little result. There are times when medications are necessary. This was one of them for us.
I have family that have chosen not to medicate her children who are clearly struggling. They’re so hell bent against medication, but are doing all kinds of other shit that doesn’t seem to be working.
Mine was diagnosed at end of 3rd grade. I met with teacher as did psychologist in the hope that 4th grade would go better (private school). It didn’t. I homeschooled for 5th & now 6th. I’ve decided to try medication this year and we met with a psychiatrist a few months back. I’m hoping we get her dosing & medication right before she returns to school (plan is next year for 7th). She is inattentive though & not having serious behavioral issues...it was just school and social problems primarily. She’s on Adderall XR. She also has anxiety & tics which the psychiatrist thought would resolve once the ADHD was treated and he was correct.
Post by Queen Mamadala on Feb 21, 2019 10:54:30 GMT -5
Not medicating was not an option for my son. We knew once he was diagnosed, we'd pursue medication. He was struggling in school and home life was a huge struggle. I knew he had ADHD-combined type (comorbid with ASD) from the time he was three. He was put on meds at 7.5 (he's 9 now). He's been on Concerta from the start and we noticed almost immediate improvement, though we've noticed some batches/rx seem to work better than others. It's not 100% consistent. If he misses a dose...oy. It's super obvious. Even his teacher noticed recently when he forgot to take it before leaving for school. There's such a huge difference when he's on medication. He does well in school, especially math and reading, and he's not so "on"/sensory-seeking and impulsive.
lucybrown, your post makes me reconsider our current decision to not get DS1 diagnosed. He’s excelling academically in school, but I’m 100% convinced he has ADHD. I feel like he’s doing a lot of compensating and he already recognizes himself as different than other kids. I wonder if we could turn his brain down just a bit, if he’d be able to relax and focus on relationships and building confidence.
As far as adults with ADHD, it’s VERY common for parents to see it in themselves after a child’s diagnosis. My diagnosis came first, but not until I was 36. This week, there’s a Women’s ADHD Palooza online. It’s free, but only for 24 hours after each session. I’ve listened every year and Learn/accept so much about myself! I highly recommend checking it out! adhdpalooza.com. It’s $99 (I think) if you want access to all of the sessions from earlier in the week. (Price goes up Saturday, I think.) How to ADHD on YouTube is also excellent.
arch01, that article brought tears to my eyes. I could have written it. In school, he works REALLY, REALLY hard to be perfect. But at church, where he can be himself, he is all of those things in the article.
Post by expectantsteelerfan on Feb 28, 2019 14:07:35 GMT -5
ADHD makes so many parts of life harder for our kids. If medicating can help get them even closer to not as disadvantaged, I'm all for it. I feel like the medication makes some things easier so that they can actually learn to deal with the disadvantages the medication doesn't help with. DS is 9 an has been on Concerta since he was 6. We haven't had sleeping problems with it, but we do have appetite problems. We basically let him eat whatever he wants after 7 PM when the medicine has worn off. We could stop on weekends/vacations, but ds doesn't like how he feels when he stops, so we don't. We are going to try having him go on a lower dose over the summer (we tried it over Christmas, and the lower dose worked well, but wore off a lot sooner, so we're ok with that when he's not in school). Ds is also on Guanfacine (Intuniv) to help him deal with the 'come down' effect of the concerta. He was having major tantrums after school when it would wear off, and adding this in helps a lot. Previous posters were correct that it is a non-stimulant and does need to be taken every day to build up in the system and can't be skipped, but the side-effects are much less common than with stimulants. That being said, we need a stimulant to really help ds focus during the day.
Any time! If I come up with more, I will definitely post them. I have a list of kids books somewhere that we got from the developmental pedi. DS has responded very well to identifying the pros of his ADHD because he can get so frustrated with "not being normal" as he puts it. It has helped him when I explain things he can do that I can't to see the ADHD as a benefit, not a hindrance. The doctor explained it to him as his brain was a race car zooming in and out of traffic, not always looking while it changes lanes, so the medication helps his brain follow the speed limit and be more careful. XH has warned me though (he has ADD) to not let him use his medication as an excuse for poor behavior-he did this as a kid. That has been a conversation I have struggled with with DS. I've recently settled on the fact that no matter how small it is, he does have some control over his behavior, with or without meds. He was using the excuse of his medicine must not be working to try to get out of trouble. We just had that conversation last week for the first time.
kdubs923, glad it clicked with him and he swallowed the pill with no issues! Good luck, I hope you start seeing a difference. We had to up DS' pretty quickly and I am guessing we will go up another mg next week when we meet with the doctor. I at least feel like we are on the right track at the moment.
Post by MadamePresident on Mar 1, 2019 20:17:02 GMT -5
Every family is different, but what has helped by younger sisters dramatically was following the Feingold diet. What it does is avoid artificial fragrances, flavors, and preservatives. It was seriously the difference between my sisters being able to focus or not.
It is something you need to commit to for a few weeks before you discount it, but it helped my sister so much to be able to function without difficulty so much.
How's it going kdubs923? Hopefully you're seeing some improvement.
An update on us (I didn't want to start a new thread, but like getting feedback from others with more experience)
After 6-8 weeks on Vyvanse, we decided to try something different. 10mg wasn't quite enough for her and 20mg brought some negative side effects. DD had a major afternoon brain fog and was super moody. She was either zoned out or in her room, coloring in the dark, listening to the same song on repeat. For my normally upbeat, chatty 7 year old, this was a bit alarming. She also talked about her imaginary friends a lot, so I wonder if she was also having some hallucinations. We switched to Focalin XR a few days ago, hopefully this is the med for her.
We also just got her 2nd trimester report card and saw major improvement in all areas. Further proof that the decision to medicate was the right one for us.
lucybrown , that's fantastic that she has improved in all areas!!
Thanks! I'm really happy she is completing her work and not making as many careless mistakes.
This medication trial and error takes patience. OMG...so much patience. I don't think 10 mg of Focalin is working for her, but we have to give it another week or so before increasing. Now that she has been medicated and able to focus, the lack of focus seems so much harder to deal with, lol.
Does anyone have feedback on the short vs. long-acting meds? Our doctor tends to prefer the long-acting, but said some kids do better with the short-acting ones. If Focalin XR isn't giving us the results we want, I think the next step will be to do a shorter-acting Adderall, with an afternoon booster to get through homework & the evening routine. Do the shorter-acting ones eliminate some of the sleep issues?