A brief summary: my son is 6.5, diagnosed with ADHD and Anxiety at 5. We started stimulant meds and spent the last 18 months iterating on every possible type (Ritalin, Adderall, Concerta, Ritalin LA, Ritalin CD, Guanfacine, Clonidine, Hydroxyzine, Celexa (SSRI), Effexor (SNRI) and multiple doses within.
He was held back in pre-K and started K this fall. 6 weeks in, he was asked to leave his private school for lack of focus/listening/behavior. We enrolled him in public school, and while the first two weeks went well (we took him off of Concerta and his SSRI around this time and switched to Guanfacine, which was initially wonderful), things are now even worse in terms of mood/emotional regulation/behavior.
Our latest meds iteration took him off of Guanfacine (thought it was causing the aggressive behavior) and has him taking Effexor (SNRI for Anxiety) and Clonidine (to help with sleep).
He’s hitting classmates, fighting with his brother, screaming and crying over the smallest things, having meltdowns (refused to go to his class for 20 minutes because he was upset I wouldn’t let him wear snowboots), etc. I feel like we can barely leave our house.
We have a therapist working with him weekly, a child psychiatrist specializing in ADHD, did a Neuropsych evaluation, and are in process with a 504 and IEP.
I feel alone, embarrassed by his behavior, confused, and stuck. Where do we go from here? Are there other medications, therapies, or ideas you could share? Does this sound familiar to anyone?
Many thanks to this community for the feedback and guidance. I love having all of you as a sounding board.
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JJMom16
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It sounds very familiar. I actually follow you on here because our situations sound pretty similar. We've written each other before.
Thank you for sharing your journey. We've done all of those things too and I can say that you're doing all of the right things. He is very blessed to have you as a parent. Definitely.
Perhaps checking out Occupational Therapy. We have been doing that because of his handwriting and his emotional dysregulation. It is supposed to work with that. So that's something you can check out.
Just sending you positive thoughts because I've seen an improvement and I never thought I would.
Reach out anytime. I'm here to listen and help when I can.
Thank you, Saguaro22 . I will look out for your posts! We haven't done OT, but school will evaluate for it. I will look into something private. We suspect he has a sensory issue with noise, and the school flagged handwriting, as well. I appreciate your support!
Occupational therapy to address sensory defensiveness (we have auditory and tactile se nsory processing issues) also helped us. Vyvanse (20 mg daily) and Guanfacine (1 mg twice daily) combo therapy as well. You are doing amazing and it's the brain not having what it needs, like a diabetic seizure, it should not be embarrassing (but is). You are brave and must know you are getting medical treatment for your child. You should be very proud of yourself and we are rooting for you.
It can be so difficult when our kids are little and we’re trying to figure out how to support them, but wow, you are doing so, so much! If you are near a large university hospital, a developmental behavioral pediatrician (healthychildren.org/English... would be a great person to see who can better direct you to therapies that might be useful. Oftentimes when our littles are anxious it is due to a delay/skill deficit. A speech eval could determine if there are pragmatic language deficits (social behavior/understanding) and an OT eval might determine if sensory issues, retained reflexes, or other motor or emotional regulation issues may be contributing.
Has your psychiatrist ordered genesight testing to help narrow medication choices? It might be useful. Through that testing we inadvertently discovered that our son metabolizes less than 30% of the folate he ingests. That’s a rare discovery, but adding broad spectrum vitamins made a huge difference for him. For some people, the testing really helps narrow med choices which can be helpful.
Generally, I would say that we discovered that the more routine we could build into the day, the better for anxiety. Could the school use a picture schedule (not just for your son, but for the class) and give advanced warning before transitions? We also found focusing on the positives (using a marble jar for rewarding expected behaviors) was key because our son encountered so much “correction” everywhere else. Triple P parenting has a nice online program on positive parenting for differently wired kids.
Consider checking out Tilt Parenting too. As your little one gets older you will meet other parents with similarly wired kids whether in the community or in the waiting room at a therapy provider. Just starting school is so tough though because it’s hardest to find your tribe and not compare. Tilt parenting is a great book and website for that.
Regarding the IEP and 504, consider looking up your state’s parent resource center: (parentcenterhub.org/find-yo... They often have info sessions covering the basics and can even refer you to advocates who really help lighten your load. A Day in Our Shoes is another great site for info on the topic.
Thank you, Aspen797 . We did do a speech evaluation, and he has a mild deficit (5 points off their scale.) I will look into OT. We do have a picture schedule at home and at school.
Our psychiatrist doesn't use the Genomind or Genesight tests. He doesn't think they're accurate. I find this odd. I've considered switching providers. We did do a very comprehensive CBC through a Naturopath, and are using the Hardy Nutritionals vitamins. I may go back to the Naturopath for updated bloodwork as it's been 18 months.
if he doesn’t process folate that’s a big red flag for MTHFR. Have you done genetic testing? Read the book Bad Genes and find a doctor who runs all of the right tests! You CAN treat ADHD without pharmaceuticals. Also, how is he sleeping? It all begins and ends with GOOD sleep. Don’t stop until you find the answers you need. Try a sleep clinic? Hang in there!
You can check my other posts about broad spectrum micronutrients. I’ve been where you are. Psychiatrist recommended them and was a game changer for my son. I know you feel alone and embarrassed, but you’re not. Know that we have been or are where you are now. Wishing you the best!!
Thank you, Cjkchamp . We are using Hardy Nutritionals. How did you determine the proper dose? I haven't seen a big difference, but we may not be using enough per day.
Oh nice. Just remember to work with your psychiatrist since your child is on medications. Medications should be reduced as micronutrients work. We started off at one pills twice per day. Then increased to two pills twice per day, then two pills three times per day (this was when we started noticing positive changes with our son). From there we increased to three pills, and ultimately to four pills three times per day. Is it a lot. Yes it is! However, my son is doing exceedingly well now compared to having been moved to a self-contained classroom at a totally different school when he was a first grader. His emotional regulation made all the difference. It now makes his ADHD much more manageable without the opposition and the aggression getting in the way. Meds were decreased to zero for our son within about three months (started in February and ended in May - if I remember right). I would love to hear updates from you and hope the Hardy DEN end up making an impact!!
Thank you, Cjkchamp . Our psychiatrist also isn't recommending these; I've had to research and implement on my own. He's strictly doing prescriptions.
I'm with you, I can manage hyper, but can't handle opposition and aggression! I will try moving up from 4/day to 6/day and see if we see any difference.
You’re not alone. You’re a great parent taking all the right steps. It’s not easy and I agree there are moments of feeling shame and embarrassment for both the parent and child.
I wish I had some answers for you, but unfortunately I don’t. But I do want to tell you that you are a great parent. You haven’t found the correct combination (of whatever that turns out be. Whether the correct Rx, therapy-which could also mean finding that ‘just right’ therapist that fits his needs, and or whatever). As he ages, and starts to put it all together, maybe the realization of just how lucky is to have you on his side will help him?
I can only imagine how frustrated, defeated and exhausted you must feel. But for someone who struggled horribly for 47 years before getting diagnosed, I say ‘God Bless You!’ for all that you’ve done. I know that once you put this round of mental, emotional and physical exhaustion behind you or in it’s proper place, that you will no doubt get up again each morning and keep trying to do the best by your son. My (a lot of on this website?) quality of life would have been tremendously better just having parents/advocates help in my life.
Realize that no matter how little you may see directly, how your efforts to help your child has worked, the benefits are much more than you know. In no way am I minimizing your… journey(?), but it brings a pleasant feeling to know that there are parents like you. By doing all you can to help your son, you are also making the world a better place.
I thing I've learned with my son, especially when he has that age, is to pick your battles. I'm not sure what the situation was as to why you didn't want him to wear snow boots, but sometimes I just have to let my control over what he does go and just pick my battles. My son is very strong willed. If he wanted to wear snow boots to school in 90 degree weather, fine whatever. It's not the end of the world. And also giving choices is a good way to get them to do what you want as well. Give him 2 choices, both of which you approve of. Red shoes, or blue shoes? Dinosaur stuffy or teddy bear? Hopefully this helps
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