Looking for some advice as I am feeling lost and well just defeated that we are hitting another wall/falling off the cliff again med wise.My son is 8 with Adhd and anxiety/mood disorder. We have had a lot of success with parent training BUT when meds seem to get out of whack/stop working it gets difficult again. I felt before we could always figure out "oh he just needs a tweak of the stimulant or a tweak of his anti depressant." Now I feel so lost at what to do. He is so frigging sweet, helpful, kind and smart when he is regulated and then when not regulated..loud, obnoxious, irritable, defiant. It feels like things work for a few months then we need more tweaking.
Now, this time the tweaks don't seem to be working. We recently added on Strattera 10mg for a week and did fine. He has been on 18mg for 3 says and this afternoon told his para and case manager he was going to punch her in the face and to F off. He has NEVER used this language at home and never at school. He was upset that he couldn't check out a certain book and then it escalated. They were great and supportive about getting him back regulated but we all agree this is out of character for him. We did also recently bump up his afternoon stimulant but that's been over a week and no big anger outbursts like this.
Sorry for the long post I'm just lost at where to go with this. The reason we added the Strattera and made the increase in stimulant is because he has been having a tough time spending more than 2 or 3 hours in the general classroom this year. He has been refusing to do work at school at times and then running/throwing fits when they make a plan to work through these times.
I'm terrified they are going to suggest he go to a different school because they just can't accommodate him. We love this school and he really does have great support there.
I just don't understand why things seem to be working so well for 3 or 4 months then not. Has anyone else experienced this? He says he is not sad, doesn't feel like there are to many kids in his class, likes his classmates and teachers just doesn't want to do what the class is doing. They give options for him to choose and more challenging work if he wants as he whips through the worksheets the rest of the class gets. He also says he is not bored. Part of me knows it's meds because of the dysregulation we are seeing but also he has probably figured out that if he behaves badly they will take him out of the classroom. Ugh!!
Lastly, is it possible that 3 days on the 18mg strattera could cause this big outburst? I know it's technically a low dose. I don't know if I should give it tomorrow or not.
Thanks for any advice especially on if you have experienced having to make frequent tweaks in meds. We do work with a child psychiatrist who manages his medication.
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SurvivorFan
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Thanks for the post, we are happy we are on this ride together.
Our son is 17 years old and seems to be in a great place now, but boy did we have very challenging times while he was younger.
I guess I would say.. for us it was really a 3 legged stool… educational plan ( things we needed were in this to support school needs), Thearpy( this was so helpful to have a psychologist to help him deal with his behaviors that I dressed in the sessions) and medication.
I will say looking back I was in such a live to get through each day and I wished I had listened more to his personal needs. For us sports was the reason he went to school. Now he gets that he has to do well in school to live his dream.
We insisted he have medication for school and also tutoring and sports. Our son even now says he doesn’t feel a huge difference when he takes his medication. But he has always known he doesn’t get in as much trouble when he takes it.
Go with your gut and tell the doctors when things are rough. Try to find the “carrot” that helps him outside of school so he has a balance.
I wished someone had told me life now is not what it will be when he is older, maturity does so much to help them.
Hope this helps. Hope you find the right tools to support him.
Thanks for your reply. We definitely have a ton of support through the school and out along with a great IEP plan. And when meds are working things are honestly pretty great.
I am just trying to figure out why meds seem to work well for a few months then not again. I wish he loved sports but is just not into it. Have tried many many different things.
I definitely follow my gut and let his doctor know when things are sliding right away. We are lucky she is very responsive. He metabolizes things so quickly and then throw in the generalized and social anxiety on top of it makes it so hard to nail down sometimes what's not working.
It makes me feel terrible to say I wish time would speed up sometimes so we could get to the maturity part of all this. My husband says he was the same way when he was young/had severe adhd. Still struggles with some things but he found his passion and is very successful in his career! My son is very smart and kind. I just wish he didn't have to fight this "other side" so much.
It us funny how this all works. When I was in your shoes, I felt the same way. We would say, " our son will make a great adult", but this kid stuff stuck.
Hi - you mentioned that he metabolizes meds quickly. Please ask the Dr if there is a patch available for any of his meds (or similar meds).
I had to try a patch with my 13 yr old son in late August. This was accidental due to the ADHD pill shortage and the fact that my 12 yr old daughter was on the Daytrana patch (but she wore it on weekdays only). So out of desperation I had him try it when I was not able to get his pills. They were on the same basic medication, just different delivery methods and different doses. He found it worked great because for the first time his meds didn't start wearing off before school ended. This was due to his fast metabolism with oral meds - but his skin can't pull medication out of a patch faster.
Thank you for this suggestion, I will definitely bring this up to his doctor. He metabolizes quickly and 2 Focalin XR only last him until late afternoon. Then it feels like it's leaving his system to fast so we get the awful wear off period and then full on base line symptoms return. If a patch could work more evenly that could really make a difference.
have you ever tried Guanfacine? This med, eased things for me and improved my experience with stimulants. But don’t forget that ADHD is always there, so outbursts every now and then are always possibilities… meds cannot solve everything!
Hi! Yes, he also takes Guanfacine in the am and late afternoon. We do notice it helps in some regard, especially for sleep. We have tried clonidine but had bad reaction. We are trying the Strattera now and it seems this is not going to be an option either due to aggression from it. Definitely get meds don't solve everything but there is such a difference from when meds are working to when they are not being effective anymore.
I had a similar experience when my child was younger and I opted to do a test called "Genomind". It was (and still is) offered through the pediatrician. A cotton swab sample of DNA will be taken from the child's saliva inside his cheek and sent in for testing. The lab will test the specific sample against all kinds of medications and will give you a report of what medicine works best given the metabolic type your child portrays. This has helped A LOT. We did not have to go through trial and error anymore and tried the medicine that was recommended based on how the body breaks it down and it worked.
Hi SurvivivorFan, My son tried Strattera when he was younger and after a while of being on it, a few months, he became very agitated and started having sudden bursts of agression. Thought I would just put that out there that Strattera was not a good fit for my son, this side effect was difficult to pin on the medication, becasuse he was on it for a while and all seemed fine.
Thank you for your reply and your right its so hard to pin point exactly what med/if it's med sometimes. I read some more reviews from others who have tried it and they reported the would feel OK during the morning but come afternoon they would feel extremely agitated like they could blow up on the next person who spoke to them. We took him off of it and the big mood swings have stopped.
Also, in case anyone else is following this thread- Taking him off the Strattera stopped the big aggression outbursts. We were still left with the underlying irritability/moodiness/refusal which was why we started the Strattera to begin with.On Thanksgiving he made it 10min before my husband had to take him home due to him being so obnoxious/rude. My brother told me his co worker, also with a son with severe adhd,figured out that due to having to go to a different pharmacy each month to find his medication he was having same exact behavior issues. For several months I have had to do the same- go to a new pharmacy/pills look different/different manufacturer. So, thankfully I had some old short acting methylphenidate saved up. Yesterday and today I have not given the Focalin XR and what do you know..My happy, kind and helpful child is back. All irritability gone! More energy? Yes, but I will gladly take that!
I am an adult taking a generic version of Strattera.
Unlike stimulants, it takes time for Strattera to build up to a therapeutic level in the body. It's unlikely (based on what I've read the average experience is worth Strattera) that it would have much effect after only 3 days. But then I read over my notes from my own experience when I started on this medication, and I did experience some changes within the first few days.
So, while unlikely, it's possible. My experience leveled out within two weeks. (For some people, it can take several weeks.)
Totally get it. He had actually been on it for about 2 weeks total. We started out at 10mg for 10 days. For whatever reason my son is really sensitive medication wise. For example, when we tried to increase his Celexa by 10mg. After 4 days his behavior was extremely concerning. Talking and moving nonstop and completely out of control. When we went back down to previous dose that went away. All I can go by is that his behavior went very uncharacteristic again with the increase in strattera. Teachers/us have never heard him swear or threaten violence ever. I can't risk him getting expelled to wait it out and hope it gets better not worse. And from what the Dr said 18mg would most likely not even be therapeutic level for him. Its frustrating for sure because I would love to get him on less stimulant per day. Guanfacine helps some but is not enough.
I am glad we tried it though and don't want to deter anyone else from trying it just wanted to share our experience. Everybody reacts differently!
Also to add, my husband also with adhd tried Strattera. It worked so well for him but the 3rd week in his side effects were so bad he had to stop. He said his brain felt like a piece of Swiss cheese and he couldn't hold onto a thought. Like a thick fog. Was unable to be productive at work at all. He also had goose bumps all the time.
One last suggestion.. our psychiatrist recommended Wellbutrin, instead of a stimulant. We struggled to get medication and she had us switch. We have been surprised that it has worked well with Guanfacine. Best to you
Thank you for the suggestion. I will definitely keep it in mind to discuss at our next appointment. We did talk about the 24hr guanfacine a while back but decided since he metabolizes so fast it was best to keep it am and late afternoon. If he does not get that 4pm dose he is up until 3am. With it, he is asleep by 8:30 so I don't really want to experiment with that lol
Strattera can have very different effects for different people.
It gave your husband brain fog and made it hard for him to retain information, but for me it relieved the brain fog I'd lived with my whole life and enabled me to retain information beyond just a few minutes.
With your son's reaction, it does sound like a wise choice to take him off of it. The guanfacine sounds like a much better treatment for him. I've read many times that Wellbutrin in combination with Guanfacine is an effective treatment for many people with ADHD, if stimulants aren't the right treatment option.
Have you discussed Qelbree with your son's doctor? It's a newer non-stimulant that was approved for use to treat children with ADHD within the last couple of years.
That is wonderful that it worked for you. He saw similar success in those first few weeks so we were pretty excited. It was a real bummer for him when the negative side effects kicked in and were more than he could "push" through.
I will definitely be asking about the Wellbutrin/guanfacine combo. My son does have a history of febrile seizures so worry a bit about the increased risk of being on Wellbutrin. I work in EEG/neurology so have seen the correlation through pt histories. We also have yet to try for him any of the the amphetamines.
Glad that you discovered that the Straterra was the issue. We tried Straterra as well and found we had to go extremely low and slow in increasing or had effects like you mentioned. It didn’t end up being a good fit in the end anyway.
I wanted to echo another poster that getting genesight or other psychotropic med genetic testing may be very helpful. Our son had some traits like yours when younger. Correcting for a genetically caused nutritional deficit made a huge, huge difference for us. The testing also helped pinpoint meds that he processes less or too effectively and made it easier to pinpoint or skip.
Does your son have sensory issues? Sometimes the environment can be overly stimulating. An OT can evaluate and give recommendations.
Can the school do an ABC chart ( iris.peabody.vanderbilt.edu... to try to figure out any commonalities in what is setting off the behavior or reinforcing it? The Behavior Code by Jessica Minahan is a great book that explores the interplay of refusal/oppositional behavior in school and its root in anxiety and avoiding things that are painful (sensory, social/pragmatic language, dysgraphia, learning disability, etc). There may be something in the environment that is stressing him that he can’t quite articulate but a ABC study would show. Hopefully it could provide info that would highlight better ways the staff can support him or skills that he can learn that will help him eventually help himself.
I just realized that the link I included was fuzzy on a point. The point of doing an ABC is to try to find what is motivating or reinforcing a behavior. Once you have some good guesses, the next step is to identify a socially acceptable replacement behavior *that meets the same needs of the child* in that situation or address the underlying cause (e.g., replace flickering halogen bulb, teach typing instead of forcing handwriting, allow movement breaks or heavy work, etc)
Thank you for the info and resource! I will dig more into it and hopefully be more prepared for our school meeting this coming week. I am curious to see if the better behavior we are seeing at home translates to school. I am guessing we will still have some refusals but hopefully with the underlying irritability/attitude seeming to be better he will be more accepting to redirecting and or taking some movement breaks to reset. He does have "jobs" written into his IEP (which he normally likes to do) but he had not been regulated enough to make that choice lately. Fingers crossed for some improvements for us this week. I sincerely appreciate everyone's feedback and experiences. When times are rough it can be so isolating and I think like we all know, unless you experience this road 24/7 like a parent/care giver does its hard to understand the stress, worry, and heart stabbing pain we feel for our kids.
Hi SurvivorFanI hear your frustration and can relate to the rebellious and combative behavior that occurs at times. We are still in the process of trying to find the perfect dose for my son. He is currently on 25 mg of Strattera and I have not really seen the improvement in behavior as his teachers still report that he is very difficult to keep engaged in class.
We have a physician's appointment on 2 weeks and I suspect that the dose will be increased. I too am frustrated. Sometime he is okay and then other times he is a different child. He can be loud, obnoxious and difficult to deal with at times . I have to remind myself regularly that this is not about my parent being less than ideal.
.I think your child could benefit from an increase in medication dosage as 10 mg is a really low dose.
All in all this whole experience is one in which you have to be able to take life one day at a time. Be kind to yourself. This is not about your parenting. Remember that children with ADHD usually take a bit of time to catch up in maturity so your expectations of them have to be realistic. You will say the same thing 50 times before they actually do it.
I'm sorry that your kiddo/family are going through a similar situation. Sometimes it can drive you crazy trying to put all the pieces together and figuring out what is causing xyz behavior this time around. And like you said, sometimes things are so good and we get a sweet, calm, regulated kid who we love being around and then BAM that switch flips.
I think for now we have settled down again med wise with the changes we made and have a regulated most of the time kid. But, there is some refusing of doing work still at school which is frustrating. We have a meeting coming up on Wednesday with his IEP team to try and come up with a plan. I have requested that my son is also present so that he can see us/teachers are on a team together and all understand the rules.
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