Starting the frustration roller coas... - CHADD's ADHD Pare...

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Starting the frustration roller coaster ride

sms3941 profile image
30 Replies

So it begins. I have been silently watching so many posts and replies from this site over the past six months. I am finally here to post my first question as I am still processing what happened today at school. Today marks the first day my five year old in junior kindergarten was sent to the principals office and I got the dreaded phone call. We have been struggling with self control and aggressive behavior with other children, mostly in the school environment. My son was diagnosed with ADHD one year ago and has been taking methylphenidate for almost one year. At first I saw positive improvement with behavioral and focus. Over the past few months I have steadily seeing a decline in behavior and the medication does not seem to be working at all. We have tried short acting, extended release, different dosage etc. I just scheduled an appointment with the pediatrician tomorrow. Thinking of changing to a different medication that might work better. Anyone out there had good then bad results with methylphenidate and have any suggestions as to what we should try next. I do understand everyone reacts differently to all medications. Just looking for experiences. I should also note we have a meeting scheduled with the school social worker and school psychiatrist this week as well. I know there are so many of you out there that Have done this roller coaster ride but it’s really starting to take an emotional toll on me and our family. I appreciate any insight.

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30 Replies
geemamom profile image
geemamom

my boy also 5 in k just recently started meds [also was agressive/dangerous at school] so i can offer any helpful comments on that.

just read your post an wanted to send you a virtual hug. good luck.

sms3941 profile image
sms3941 in reply to geemamom

Thank you!

sms3941 profile image
sms3941 in reply to geemamom

If you don’t mind me asking, was your child aggressive and dangerous to himself or others? Are you working with a psychiatrist also? What meds are you using now? Sorry for all the questions 😃

Onthemove1971 profile image
Onthemove1971

Sms3941- Welcome to this journey and yes the downward roller coaster is very hard. Please know that what goes down comes up, it will get better.

I was wondering is the school psychiatrist going to prescribe medication? I really think it would be best to be dealing with a child psychiatric who can work on the dose and type of medication correct for your child. Our son he takes 2 types of medication- Ritilan(am) and Intivi (ritilan and Intivi in the afteroon) and we just increased the dose after a downward spiral. We ar on our way up now and wish I could determine what make him go down.

Best of luck know we are here for you, please reach out when you need us.

Take care, big hug.

sms3941 profile image
sms3941 in reply to Onthemove1971

Right now the ritalin is Perscribed by his pediatrician. The meeting I have this week with the school psychiatrist and social worker is just the initial meeting to discuss the challenges we’ve been having with the behavior at school. I would imagine it is the start of many more meetings to come.

Onthemove1971 profile image
Onthemove1971 in reply to sms3941

I would be surprised it's a school psychiatrist not a school psychologist.. there is a big difference. At least here in CA the school system is responsible for help children with Mental Health services, I have never heard of a psychiatrist in the schools. That is wonderful if you are getting that level of help. That person can give you advice about medication.

Sorry you are going through this..

Take care.

sms3941 profile image
sms3941 in reply to Onthemove1971

I apologize, you are correct I miss spoke it is the school psychologist not a psychiatrist.

Onthemove1971 profile image
Onthemove1971 in reply to sms3941

No worries... it is wonderful you are getting the help.

So I would highly recommend that his pediatrician refer hi I'm to a psychiatrist. They specialize in helping with medication and most are very knowledgeable about dose, type and time frame for the medication.

I wanted a lot of time not seeing one becuase I was fearful of having to work with another person, but ours help us so much.

Best of luck.

sms3941 profile image
sms3941 in reply to Onthemove1971

We actually have not been giving the meds during the day. He does a 5 mg tablet short acting in the morning then a 10 mg extended release to last through the day. I found that the extended release isn’t as effective as the short term release and 20 mg was way too much.

Oh gosh, yes! We are in the middle of adjusting medication. The fast acting Ritalin was hard, worked but we needed more and not as "jagged". We're starting concerta xr. btw today has been "trying". right now we are crying doing math and reading. Yesterday we had a small victory. I might lose my mind today, but I hold on to the small victory yesterday. HUG

sms3941 profile image
sms3941 in reply to

Did you try the ritalin extended release? Just wondering why you switched medications?

in reply to sms3941

We are starting concerta xr on Wednesday which is the extended release Ritalin. We also went up a dose, so I'm interested to see how that works as opposed to the short acting Ritalin which is what we started with. She did show improvement with the short acting Ritalin, but not enough to REALLY notice a difference. She is also on 7mg of ability at night because she also is diagnosed with a mood disorder. I intend to stick with trying the medications until we find one that works for her, although this is frustrating, her pediatric psychiatric nurse practitioner and her therapists (all three of them) and I believe this is the best course for her. Feel free to contact me anytime! Happy to share our experience, we all need to support each other!

sms3941 profile image
sms3941 in reply to

What symptoms were occurring to have a mood disorder diagnosis, just curious as I’ve been thinking this for some time.

shellyn04 profile image
shellyn04 in reply to sms3941

hi sms! my son is 12 and started meds at 5. wish i had better news but is a constantant roller coaster. they get bigger and they change so meds need to be changed often. i remember being on a certain med for almost 2 years and i was amazed!! we started out getting guidance from our pediatrian but my son was a bit more complicated and needed someone that reeeally new all the meds. we currently work with a Psychiatrist. he has been fabulous. but not all are ;) my son also takes 3 diff meds a day. he takes mydayis. long acting. takes celexa for anxiety and it helps with side affects from the others. and trazadone for sleep. we also could not do the XR's. just like you, we found they didn't work as good as the short acting. at one point, we literally gave my son his stimulant 4 times a day. every 3.5 hrs. the problem with that for us was if i didn't catch it at the right time, he would have side affects from it fading out. we also have an IEP at school. we need it for extra help with the work. my son constantly struggles to keep up with the others. he was never really a danger to himself or others, but i could see it was going in that direction. not on purpose but impulsive and poor decision making. :( and yes, mine got expelled one day from KINDERGARTEN!! i was soo angry!! after they continued to tell me we would work together. so YOU have to push for help with your child!! the schools (or at least the ones in our area) won't really give you advice. you just have to keep pushing and getting ideas from this site is smart too. many have already gone through it :) you sound like a GREAT mom!! there will be tough days... but they are sooo worth it :):) HUGS!

abilify, not ability. lol

Outdoors30 profile image
Outdoors30

Hi, I have been diagnosed with ADHD for 30 years now, when I was in 5th grade. Before that, I was failing most elementary grades and was known to be in the principal's office a few times. I am also a parent now of kids with ADHD. Over the years I have been on a few types of medication. Ritalin, Concerta, Adderall, and most recently Vyvanse.

Medication is a tricky thing as there are many types out there and can act differently depending on the circumstances. My suggestion is that you keep in mind that not all physicians are created equal when it comes to their level of knowledge on ADHD and that's not a bad thing, just a by-product of the several types of illnesses and disabilities that are out there and require consistent education to stay on top of it all. I would suggest finding a counseling group in your area that specializes in ADHD. Let them work with your son on behaviors and alternative ideas when he gets angry or upset. We all get as mad as he does sometimes, but we have found ways to work with our executive functions in our brains to not act on them or step away from the situation, at least most of the time.

Couple items on meds that I know, Concerta dosages also have to consider child's weight. Other meds like Vyvanse do not. Vyvanse is currently the most prescribed to children with ADHD. We were just at the International ADHD conference and there are a lot of things out there and new items on the way. I would suggest researching some ADHD meds on your own and how they are released and when that may help you to ask questions or provide details to your physician that they may not be aware of. Good luck

sms3941 profile image
sms3941 in reply to Outdoors30

Thank you so much for this information, very helpful. The medication is definitely a roller coaster ride. He does while I am sure acting Ridellan but not the extended release and definitely has the crash at the end of the day. I will do more research on medications. Thank you.

Cassandre12 profile image
Cassandre12

Hi I read you posted and just wanted to send my love,this journey will make us and our quirky children worldly rounded great people 🤞

Take care of yourself x

sms3941 profile image
sms3941 in reply to Cassandre12

I agree, thank you so much.

Shamasamdrew profile image
Shamasamdrew

First and foremost, it is hard. I get it and you are reminding me of our family’s journey. Kindergarten and pre K were challenging for sure. When you meet with the school psychologist and the social worker, first listen and then come up with a plan to deal with your child’s challenges. Read, read, read! Books and boards and anything you can get your hands on as they are helpful for you to be able to contribute to the meeting. I like to listen, but also be active in the planning. Checking with your doctor regarding the meds is a good idea. Maybe just a dosage change? Finally, I wish for peace for you on your journey. My son is 12 now and it has gotten better. Every year brings maturity and change that will hopefully be for the better.

sms3941 profile image
sms3941 in reply to Shamasamdrew

Thank you so much for your response. I think I have read so much I feel like an expert, LOL my husband tells me I should’ve been a doctor. We have tried dosage changes with Ritalin however I did not like what I saw in the change. Whether it was the difference in short acting versus long acting or maybe time to try a new medication all together. Thanks again for your support.

MunchkinMommy537 profile image
MunchkinMommy537

My son started showing signs of ADHD in PreK and we had him evaluated. From there he’s been on 10 different combinations of medication (he’s in first grade now). I highly recommend finding a pediatric psychiatrist to help get the medications right. Our pediatrician is wonderful, but she knew very little about mental health issues, and after trying a couple of different things she wasn’t comfortable trying other things. It’s going to be a roller coaster ride his whole life, I’m sorry to say. But if you can find the right combination of medications you can get some reprieve from the chaos. Just remember that every child is different, and what works for some people won’t work for others. Good luck.

anirush profile image
anirush

When you meet at the school if you don't already have a 504 or an IEPI would get one started. You can put in modifications to help your child in the classroom.

Stimulant sometimes cause anger. You may have to move him to a non stimulant like Vyvanse or straterra. A child psychiatrist also has more experience dealing with ADHD than a pediatrician. We started with our pediatrician and then moved to a psychiatrist when things got tough.

Janice_H profile image
Janice_H

Hi there, first...take a deep breath. We have all been in a similar situation as you. Please make time to find a psychiatrist (not a pediatrician) who is more familiar with medications for treating children with ADHD. It takes many different medications to find the right one. They all have side effects - aggression is one of them unfortunately. You can offset the behavior issues by seeking a behavior therapist. They are very helpful in teaching you how to de-escalate problematic behaviors.

I am glad that you have seeked those on this website for assistance. We are here to give you support and encouragement so that you do not feel alone and frustrated.

Mmagusin profile image
Mmagusin

With stimulants, I often feel like we’ve traded impulsivity & inattentiveness for aggression. I try to remember before the meds if he was aggressive. The answer is yes, but it really comes out when he comes down from medication. I believe this is withdrawals. We use Dexmethylfenidate xr during school but may switch to fast release because it’s just not working. I suspect his body is not metabolizing the capsule as designed. Although his dose is high, 20 mg, I think he’s not getting the medicine. I suggest that because we’ve tried 10 mg of fast release & note a huge behavior difference. I wonder if the release is just too little or inconsistent. Maybe that’s what is happening with you plus your dose might be too low for his weight. Go to a psychiatrist who can help you try different things. Don’t give up.

Nikita2 profile image
Nikita2

Hi and welcome!! My 7 yr old son was diagnosed with ADHD this past April at the end of 1st grade. He was hyper at school and aggressive at hone. We started him on 10 mg methylphenidate, then ramped it up to 18 mg Concerta. I would highly recommend Concerta since 5mg is released the first hour (great for the morning routine) and then the rest slowly releases to keeps him going through the day. Once school was under control, we focus on behavior at home so he started on 1mg Guanfacine and was ramped up to 2mg. This stays in his system 24/7 and helps even out his temperament and calms his down. The combo has been working great for us so far but I think there is still something else going on.

We are getting a neuropsychological exam done in a few weeks to confirm our diagnosis. His therapist and med mgmt doctor believe our son may be depressed or anxious and the aggression is stemming from that in which case we would need to switch medication. I didn’t want to start medicating on guesses so for us this is the next step to make sure we are on the right path.

I recommend getting the book Reaching for a new Potential by Oren Mason. It’s a great easy read and reference to medications and also addresses other possible therapies. It was recommended to me by my pharmacist and I refer to it a lot.

sms3941 profile image
sms3941 in reply to Nikita2

Thank you so much for all of this information. We just left the pediatrician and have him an appointment with a child psychiatrist this week. Looking forward to some possible other answers.

Applecrisp profile image
Applecrisp

I agree that medication is probably the best thing to handle aggression impulsivity with his peers, but I want to echo the recommendation for a regular psychological counselor. Our son is eight and has only tried Adderall, so I don’t have a lot of medication advice. But as your son gets older I highly recommend a strong relationship with the counselor. Besides just learning to control themselves and not hit or grab other kids, these kids need to develop a whole new way to interact and enjoy friendships with other kids. Our son’s counselor has gotten him to change his attitude about so many things, and ways that we couldn’t convince him to budge on. He doesn’t argue with us anymore, he cooperates at meal times, he tries the time management tricks she gives him, and he tries to cooperate more socially. He still rather chase other kids around, Wrestle, or grab things from other kids when he wants to, but he’s building the basis for better interactions with people. Counseling isn’t cheap, but along with medication and it seems to cover a lot more.

sms3941 profile image
sms3941 in reply to Applecrisp

Thank you for the advice. I have set up our first appointment with the psychiatrist for this week. Hoping that will take us down the correct path.

Concerned-parent profile image
Concerned-parent

Yes Ma'am I sincerely feel what you are going through. My 6yr old have problems day after day at school with touching others, Talking, picking up small items and putting them in his backpack having outburst towards the teachers he just started this school in August and have been suspended 2 times and they calls me 50 times a day literally now they are threatening to place him in alternative schools they are trying to get around placing him on iep or 504 because they simply don't want him there He is not medicated at this time but I am considering a natural medication

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