Usually I do pretty good at keeping my positive pants on and maintaining a good perspective. I’m just feeling pretty down tonight.
I’ve always known my son was different. Super smart. Very emotional. Never slept as a baby. Difficult to soothe. Epic Meltdowns.
We did PCIT for 9 months when he was 3-4, and have been in talk it out therapy pretty much ever since he was 5. We still see the same therapist every other week. The summer before second grade I finally got my husband on board and we had our son tested. Not surprisingly, ADHD combined. We started guanfacine 1mg at the beginning of 2nd grade year, and it was SO much better than 1st grade. My son is now in 3rd (has a 504 plan) and struggling with his emotions, impulses, etc. he is taking 3mg of guanfacine each day and has been for months. I could see it start to not have an effect on him a couple months ago, but my husband wasn’t ready to add another medicine. Well, after Thanksgiving he finally agreed. My sons Psychiatrist (we’ve been with him since his diagnosis), put him on a mood stabilizer - Trileptal. We stuck it out for almost 4 weeks. It was awful. I’ve never seen my son so tired, agitated, and angry as all get out. So we stopped that. So now we are back on the 3mg of guanfacine which really only dials back his energy level and no longer helps with impulse control, anger, executive functioning, etc. Ugh. Tonight I got kicked in the stomach, which is why I’m on here. I have a very demanding sales job, but I don’t need to work. I am considering either taking a leave, seeing if I can go part time or quitting all together. I love my job, but I love my son so much more and I don’t want to have all the distractions of my stressful sales job which he is always competing against for my attention. I just don’t think I’m putting in the effort where I should be. I don’t want to look back 2 years from now and wish I’d chosen a different path. Ugh. And where do we go next on meds? Psychiatrist is Leary of stimulants because he’s afraid it will make him angrier. Thoughts? Suggestions? What would you do?
Thanks for listening
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Doglady28
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Welcome to posting to the group. First of big hugs for all that you have already done for your son. Getting your husband on board is also a great thing.
All I can say is you are really close to helping him and I really feel like it is decreasing his impulsive behavior. I would recommend a stimulant ( Ritalin) that is short acting. Here is the thing, if it is the answer for him, you will really know within 30 min ( maybe 15 min) of him taking it. If it is the answer it will be amazing for everyone. If it makes a little difference it might just mean needing to increasing or decreasing. Then you will need to work on the timing of when he takes it and how often. There are extended release pills, which means it is 1 pill but slowly release a small dose 3x a day.
I will say, I was told that medication only helps %60 of behavior, so don't be surprised if ALL of the issues don't go away. But I promise you it will be night and day when you find the right medication. If not Ritalin there are a few other in the category.
As far as your work, I would try the medication then consider any changes.
I would also like to recommend listening to the Podcast " Parenting ADHD" there are many different specialist speaking about so many topics to help you (I really wish I had this when my son was younger!). If you are not listening to Podcast, download a Podcast App
(castbox, Podcast reader) then search for the title.
Please, please try to do things for yourself to help ( coffee with friends, movies out) anything to help you.
We would love to hear how things work out for you. Please let us know what you decide to do.
I also have a 9 year old how is ADHD / ODD combo. He takes abilify mood stabilizer and Straterra. We have been fighting your exact combo for the last 2 years. I have gone every which way to find something that works for him. He got to comfortable running over me as a parent and things became worse. He now lives with his dad and when he comes home to visit still gets back in that impulse / rage / defiant combo. Even though is 300 miles away (which is killing me) with his father I have come to realize I need to start from square one. I am starting therapy and learning about the behavior from the start. Have you tried other options for non-stimulants besides what he is on? Is the behavior just at home? My sons safe spot is school he normal does amazing.
Thanks for the reply. We’ve only done guanfacine the past year and a half. The trileptal was the first other thing we’ve tried. We had our regular therapy session tonight and she agreed with me to get back into the psychiatrist ASAP and not wait til our next appointment in 4 weeks. My son has better behavior at school than at home, but It’s always been that way for him - work really hard to keep it together at school and then let it all out at home. Not to say he is without fault at school. We’ve gotten calls from the principal, behavior specialist, and even had out if school suspension last year. This road isn’t easy that’s for sure. I pray that we find something that helps him. All the best for you and your son as well.
I highly recommend you look into broad spectrum micronutrients. They were recommended by my son’s psychiatrist and they worked wonders for our son who was having some of the same issues you describe. There are two companies, Hardy Nutritionals and True Hope. I selected Hardy. My son has been stable for the last nine months and off all medications for the last seven months. Definitely worth investigating!!
Hello. Thank you for sharing your information regarding broad spectrum nutrients. Would you mind me asking what ones you are using? I recently started to explore this. Thank you.
Have you slept near your child or had an audio monitor in their room? Does he sleep through the night quietly? We discovered that guanfacine above 1mg interfered with REM sleep and led to some really outrageous behavior. When we dropped back to 1mg and added a low dose stimulant, things improved dramatically. With regard to aggression and stimulants, amphetamine based stimulants are more likely to cause this sort of side effect (but not in all kids). Methylphenidate based stimulants are less likely to, and dexmethlyphenidates are (supposedly) the least likely to cause side effects. Meds aren't the answer to everything, but can help. It sounds like you are doing a great job with positive behavioral interventions too. Hugs. Sometimes it's just difficult, especially at puberty onset.
Thank you for your insight. I do think it is time for us to try some sort of stimulant. I’m not against meds, as I have seen how helpful they can be. My son has been exceptionally tired as of late and I know how much harder things are for him when he’s tired. Perhaps like you said - maybe a low dose stimulant and back off a bit on the guanfacine. Calling our psychiatrist today
These are the journal articles I found that noted the paradoxical effect on REM but only with elevated doses of guanfacine: Rugino, T.A. Effect on Primary Sleep Disorders when children with ADHD are administered guanfacine extended release. J. Atten. Disord. 2018, 22, 14–24. Central effects of guanfacine and clonidine during wakefulness and sleep in healthy subjects. Spiegel R, et al. Br J Clin Pharmacol. 1980.
Thank you so very much! I will read this after work today. Our psychiatrist feels the guanfacine is no longer going to work and will be letting me know his recommendation later today. Stay tuned. My poor kid. Slept 11 hours last night and still fell asleep in the car ride to school.
My wife and I have felt strongly for months now that our ADHD 11 year-old was not taking the best medications for him. There were a few reasons for that.
So, we planned to start from scratch over the Christmas holidays. We found a new (recommended) Psychiatrist before the school break and after a review, he agreed with us. So, he gave us a formula for tapering our son completely off of all medication over a safe period of time. I emailed him daily on the changes in our son during this process. Then, we spent a few days without any meds while waiting for a new medication called "Jornay" to come in to our rural pharmacy. That period of time without any medication was a character-builder for sure.
Jornay is basically an extended release capsule you take once a day that delivers Ritalin. He has always responded to Ritalin. A few days ago, he began this one 20mg capsule daily and done ok, but with school beginning today, I think that this dose potentially will increase. I talked to the principal and the school nurse this morning after dropping him off, and they are ready. As I said earlier, the Psychiatrist has been reviewing emailed summaries from me and is guiding us daily. We will see.
As for you quiting work, my wife and I went through that about a year ago. We decided that I would retire and take the lead managing the level of care we wanted for him. Proper rest and exercise along with adequate television and video game restrictions are his life now.
Also, the last several months he has slept on a roll-away bed in our bedroom almost every night, and I don't allow myself to sleep until he starts to deep-breathe. A mild winter has made exercise outside tolerable here in the south as well. Sometimes "enacting these" isn't too pleasant, but we feel that this works best for him.
Getting him as close as possible to a life as a productive adult is priority one for our family. This along with living by Proverbs 3-5,6 keeps us going full steam.
I love this response! Thank you. I’ve never heard of Jornay but will keep that on my radar as I navigate these waters. It is of great importance to us also that the end result of all of this is that my son become a happy, well adjusted, law abiding member of society. He deserves it, and so we must always do everything possible to help him succeed - as you are doing for your son. I texted with the psychiatrist this morning and he is reviewing my sons chart to make A recommendation for a new med. I should have an answer later today. Please keep in touch as you sound like you are doing a wonderful job with your son and I could learn a thing or two from you!
I totally have to live by that life scripture Prov. 3:5-6. This has been the biggest challenge of my Christian walk, first getting the diagnosis Sept 2015 of ADHD combined with ODD/OCD for our then 7 year old son and 6 months later his dad decides he's leaving. Now that brought on a whole new onset of issues as we moved back home to GA and his dad stayed in FL where were living for the past 4 years. We were given Contempla XR ODT from his neurologist and we loved it but insurance will not cover it (don't get me started on that soapbox or we'll be here all day) so I was paying out of pocket because I saw how well it was working. Then when moving to GA his new doctor who specializes in ADHD with combined disorders prescribed Vyvanse as he thought it would be better because we were still experiencing so many meltdowns and he couldn't control his emotions and would get somewhat violent and want to hit things (including mommy). I haven't been crazy about the Vyvanse as he still has rages and along with all the pain of our situation we both struggle to control our emotions. I have had my own share of meltdowns and we have held each other for long periods of time just crying and apologizing. My son is very smart and has a huge heart, but when he is frustrated, angry or something isn't going his way, he completely loses it. I struggle with consistency and want so bad to be able to get on a consistent routine for him. (It is highly likely I have adult ADHD and hope to find out soon). I am looking into getting the Goally which I saw someone suggest as well. I am looking to see if his doctor might consider the other medications to help with the intense mood swings and anger issues. We do 3 mg of melatonin each evening, but it doesn't really help. I am with you as I am sure we all are, we just want to see our children survive and thrive in adulthood and have the confidence and ability to do so. Let's all continue to pray for each other as we travel this journey with our children we love so dearly, but, who most will never understand if they haven't experienced or been through parenting a child with ADHD. I get tired of all of the negativity so I am thankful for a safe place to come and read others' issues who can relate and see all the positive and encouraging words. We need each other! I wish there was a local support group for us, but I haven't seen one in my area here in GA.
I read your note and I absolutely hate what you are going through, and I have prayed extensively for you and your son. It sounds like you are with family now, and family always provides a good shoulder. My family and I live in a rural town and don't have access to a support group either. I would imagine support groups would be most helpful.
As you well know, God doesn't guarantee Christians a life without pains and struggles. I have been through many, many really tough challenges during my life. But, He does guarantee us that He is there for us in our time of need if we only allow Him. I have personally experienced answered prayers that have absolutely been miracles. They simply couldn't be explained otherwise.
The hardest lesson I have ever learned in my time on earth is to shift the burden from me to God. I still struggle there. I am not saying I do nothing and expect Him to do it all, I am saying I can do all things through Christ which strengtheneth me (Philippians 4:13).
I remember a few years back I was sitting with my wife at a baseball game at our high school and I was going through a tough time with a health issue. I was really feeling sorry for myself, and a very wise man was watching me across the way and came over and sat next to me. He looked at me and said, "You know, there is always someone worse off than you". He then got up and walked back to his seat aided by his cane. I will never forget that.
My ADHD son Christopher asked me one day while riding in the car if he would always "be like this". I then asked him if he could walk, see, hear...…..and so on. Of course he answered yes to all of those things, and I reminded him that we are truly blessed. He never has asked a question like that again.
I sit in on his classes at middle school a lot. One day after a class was over, he got up from his seat with a smile and walked to me and hugged me tight in front of his classmates. He said, "I did good, didn't I". It's those moments that carry you through the rough ones.
I will let you know what doc says. I will be interested to hear what direction he will go in. It’s obvious the intuniv alone isn’t working anymore, and that mood stabilizer was plain awful. Thank you for letting me know what you’ve seen work. It will be helpful to me as we start to try new meds.
I am picking up our script for Concerta today. The intuniv has been ceased. Thank goodness! My kid is doing so much better already. Of course he’s not medicated right now, so there’s that - but at least he’s not sleeping all the time. I just hope the concerta doesn’t come with awful side effects.
My 8yo takes a combo of FocalinXR 25mg (he's a high metabolizer) in the AM and 1mg Intuniv at dinnertime. This has allowed us to stop giving him melatonin at night to help him sleep, but the dose is low enough that he gets the benefits of it without the excessive drowsiness. Both Concerta and Focalin alone had our son wired to the gills at night as if all the energy the meds controlled during the day was just pent up and released when they wore off.
I'm wondering if he's tired because 3mg is just too much? I bet if you kept with the guanfacine but just lowered the dose, you might end up with a good balance. Obvs I'm no doctor so my evidence is purely anecdotal but it may be worth a chat with your psychiatrist if Concerta alone makes it hard for him to sleep.
Best of luck with everything! You're an awesome Momma!
Thank you for your insight. So today is day 2 on 18mg Concerta. He is WIRED! From the time he gets it in the morning till bedtime. I’ve never seen him have so much energy. Its either making him worse, or he was really drugged on the intuniv. It’s just like looking at 2 totally different kids. Appetite is down some and he’s experiencing some stomach pain. His teacher said he had a good day at school yesterday though. I also agree that maybe a low dose intuniv would be helpful, however I don’t know if this stimulant is right for us. Man he is crazy on it! Bouncing on the sofa, running all around the house from 6am till 9pm yesterday. I imagine today will continue to be more of the same. Not sure what direction we will go next...
I should make note that my son is ADHD Combined Type, with behavior component (basically defiance, but not enough to classify as even mild ODD).
This was our experience on Concerta as well, at first. My mom was babysitting for us on an overnight the first weekend he was on it (he'd started taking it earlier that week), and she said it was like he was on speed for the first few hours - bouncing on her couch, talking a mile a minute, making stupid noises, zooming all over the place. She'd given it to him on an empty stomach, despite our warnings ("Well we were going to eat within 10 minutes, but 10 turned into 45!" 😩😩). We'd found earlier that week that if he took it in the AM on a full stomach, that it helped with the initial kick of the meds and he wasn't so tweaked out. Though it did, however, make it very hard for him to fall sleep at night. We added melatonin for that. We also experienced some appetite loss at first; this is normal until the body adjusts. We started him on 9mg, then 18, then 27, then 36 (which gave him tics so we went back to 27). It wasn't quite doing the job so we switched to the Focalin. It's dexmethylphenidate, which is the "cleaner" component of methylphenidate. BINGO. It's shorter-acting than the Concerta (8 hrs instead of 12), and with his fast metabolism he wasn't even making it through the school day before it wore off, so we were looking into a short-acting bumper dose for the afternoons. And with my son, we had the similar issue as w/the Concerta where it wasn't doing enough to regulate his anxiety/mild depression/impulse control (and he still wasn't sleeping well without Melatonin), so that's when we added the Intuniv (and subsequently quit the melatonin which isn't good to take for long periods anyway). It's not 100% perfect (but he's 8, what 8yo is perfect?), but it's as close to perfect as we can get medwise. We also just had our first therapy session (of many to come) yesterday to help with behavioral/emotional regulation.
All that to say - try making sure he has a full stomach before you give his meds. And if that doesn't help the crazy and stomachache, maybe talk to your shrink about switching to Focalin instead. (But still always give it with food! 😉)
Thank you for the detailed response. We too have the combined type with those oh so fun behavioral components. My son is eating prior to the meds, but definitely not a FULL stomach. He could really care less about eating most days (even before meds) so I’m going to have to find something he will really eat. I will ask him to help me find something that will work for him. Hopefully that will help with the crazy, cause man...he was WILD! Lol.
I would like to restart the intuniv, just at a lower dose like you are doing In the evenings. I think it would help. Keep you posted on our journey. I’m still feeling pretty bummed out and burnt out as of late, but I’m just trying to take it one day at a time. I’ve already made it this far Good job for you on being such a supportive parent. You rock!
Intuniv added to other ADHD medication has been a godsend for both of my grandsons. Why did your doctor suddenly stop it? That may be causing some of the problems. It will take awhile for Concerta to start to work.
I’m going to ask him to give it back to us in the evenings if my kid is still wired at night. There is no way with him being wired after it wears off that we will be able to accomplish anything - dinner, homework, etc.
I’m glad to hear your grandsons are doing so well. Truly wonderful!
Was your son on the immediate release guanfacine or extended release? You are supposed to taper on and off gradually—no more than 1mg every 5 days—hopefully that is what the psych is having you do :). One mg is the charm around here.
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