Back to Square 1

[Game44]

Well, I guess all good things must come to an end...

Feeling pretty frustrated here. Our son, now 8 years old, was doing very well on stimulants. First concerta but then made the switch to biphentin. However he did not gain any weight in a year and was losing more weight towards the end of the year on being on stimulants. So 1 year later, we are back to square 1.

We tried making the switch to just intuniv and it allowed him to sleep better and gain some weight!!! But very little impulse control. Then we added back in 10 mg biphentin and definitely an improvement but not back to where we were. So now up to 15 mg biphentin and 2 mg intuniv. Still not back to the same control as we were prior to stopping and restarting. And it’s starting to have affect his appetite and sleep again. I really didn’t want to add melatonin back in but I think we have to. I’m allowed to increase his dose to 20 mg biphentin before we see the doctor again but don’t see how it will help when it’s already starting to affect sleep and appetite on the lower dose. I’m feeling like this is a losing battle. He has started to get in trouble at school again. Something that hasn’t happened all year. He is very whiny. He’s back to being “scared” and wanting someone to be with him so he’s not alone. Hard to get ready in the morning or out the door for hockey. Very uncooperative and basically the same as when we started this journey 1 year ago. We can’t get in to see psych until meds are under control and there are a lot of restrictions because of Covid. I just feel hopeless. I think I need to work on consequences for behavior. Anyone have any suggestions? Like if he doesn’t clean his room? Or it takes 12 reminders before he gets in the shower? or won’t go to hockey without us threatening to take toys away... or won’t stop making annoying voices very loudly and disruptively when playing... or when he sings loudly when he wakes up in the morning so that it wakes everyone else up...

[Onthemove1971]

We are so glad you are posting this message. I am not sure if you are working with a psychiatrist? They specialize in helping you manage medication. What you are describing is what life is like when the medication is not right. There are extended release medication, short acting and 24 hour medications. All this is recommended by our psychiatrist. Our son takes a 24 hour Initiv at bed time. This helps with sleep but also covers him all day. He takes Ritilin ER ( extended release) when he wakes up. He also has a booster dose for homework and sports in the early afternoon.

We also really really push protein at every meal. We have him drink a protein shake in addition.

Our son also goes to thearpy to help deal with emotions and issues he has.

I am sorry you are struggling, it may feel like square one, but in truth you know when he is his best and now you are trying to get that. Sleep is so important, have you talked to his doctor about him not sleeping? Or getting to help with skeep?

Take care,

[Game44 in reply to Onthemove1971]

Thank you for your comforting message. We are not working with a psychiatrist yet. I would like to but we’ve been told at this point that the meds need to be working in order for someone to work with him. We were referred to his paediatrician by his family doctor. The paediatrician specializes in diagnosing and treating ADHD. We are in contact once a week and I can send her messages through a private health messaging system. I sent her a message this morning. Our next in person appointment is on the 23rd as we will be away for the week. The biphentin and the intuniv are extended release.

Good reminder about protein. We try to push it. He does like most meats and Greek yogurt. I could start making him protein shakes. At supper he is “tired of the taste” of anything we eat. I don’t think he’s full. He just doesn’t want anymore of what we are eating.

We’ll keep at it and hope for better days. Any resource recommendations for positive and negative consequences? I feel like I have no idea what I am doing anymore without threats.

Thank you again for your response.

[Onthemove1971 in reply to Game44]

Hope to always be helpful. The reason to be with a psychiatrist is they are medical doctors who know how to treat with medication that only they would know. They also know about newer medications. But is sound like you are getting good feedback when needed. We use the Initiv at bed time. Then we use the stimulant at 7am and 3pm. He has always been on a high dose, but we have not increased, we just moved the dose and extended it.

Whatever your son craves or loves use that as a "snack" as long as it has protein. Peanut butter and Nutella smoothie are his favorite.

As far as consequences.. I punish forward. So if he is using video games and I tell him 5 min. And if he does not get off. There is no argument, just NONE the next day, I lock it up. If he doesn't do his chores then at the end of the day NO video games. I don't argue or . fight, I stay calm and use the next opportunity to punish.

I was also told that medical only corrects %60 of behavior.

Bug hugs are all the stress and what you are going through.

I really enjoy " Parenting ADHD" podcast with Penny William's, her son is older. But she has guests that covet certain topics. I know she has one about consequences.

Good luck! I know you worry.. but you are doing a great job..

[Game44 in reply to Onthemove1971]

Thank you for the good advice! His paediatrician called tonight. We are going to move the intuniv to the evening and see if that helps. And try 20 mg biphentin in the morning. She said he might have to back down to 1 mg for the intuniv. She’s going to call again tomorrow night.

I like the way you explained punish forward. I need to work on being consistent and staying calm. Some days I have all the patience in the world and the next it’s a very short fuse!

I will look for that podcast. Thank you.

[Leons]

i m so sorry to hear your son struggles. my 13 years old son just started typhus journey old meds and it does not look pretty, he seems more impulsive and even aggressive. the therapist advised to ask for a genetic test to see what meds he may not be compatible with before hand so to avoid too many switches, his dr said that a genetic test is not possible... i am doing some research on that. the best pto you and your son.

[Onthemove1971 in reply to Leons]

There are previous messages on this site about it. Good luck

[Game44 in reply to Leons]

Bert of luck to you.

[momwifedaughtersis]

Hi, wanted to send virtual support. My son is 8yo also and has some of the same behaviors... “annoying voices very loudly and disruptively when playing” —- Exactly! It’s so frustrating :-(. My therapist said to tell him “I understand sometimes you need to make noises like that/you need to move your body around/whatever but you’re disputing our family time. You can make those noises in your room but not here.” I also tend to get overstimulated by lots of noise so sometimes I appeal to his empathetic side (“all the noise is just too much for me, can you please keep it down or go in another room.”) I hear you on the threats and consequences. It’s exhausting. I think I heard in a lecture from Charles Barkley that adhd brains don’t learn from their mistakes the way typical brains do. I find myself constantly questioning whether I’m punishing him for things out of his control. I try to focus on a couple things (chores, being respectful, no hitting) and let other things go as much as I can stand. But oh it’s just so hard. And did I already say exhausting... my son has insomnia issues also. Hang in there <3

[Game44 in reply to momwifedaughtersis]

Hello! Sounds like our sons are very similar and we are virtually in the same boat. Thanks for your support and advice.

[Harnessinghope]

Whew. I am in the same whiny or loud voices, stomping and challenges getting her moving place with my 9 year old. Unfortunately, I live in a condo with a family downstairs. It is embarrassing, exhausting and such a challenge. I also think we will soon be back to the drawing board or at least need an increase in her meds. She sings loudly to herself in her classes and seems pre-occupied. Oddly enough, she is hearing everything that is said.

I plan to stay the course in continuing limit-setting on challenging behaviors, pursue the medication increase, continue adding in those positive reinforcers to assist and keep praying that I can see improvement.

Your family is doing wonderfully. I am hoping that you are able to get in to see the psychiatrist soon, can identify the positive reinforcers that will help on your journey, perhaps a parenting system like 1,2,3 Magic or Love and Logic may assist and keep moving forward.

You and your family are in my prayers!

[Game44 in reply to Harnessinghope]

Thank you for support and words of encouragement. My son woke us up with piano playing this morning - thank goodness we are not in a condo! Thanks for the parenting system suggestions. I have heard of both but never really committed to anything. It’s time I do that! All the best to you as you continue on your journey. You hang in there too!

[Harnessinghope in reply to Game44]

The true blessing of this site is not feeling alone. Sometimes, I just feel like I am the only one doing this.

[Canadianmum]

Have you tried an amphetamine based stimulant like Vyvanse? We switched from Biphentin to Vyvanse with great results, my daughter also takes it in combo with Intuniv.

[Game44 in reply to Canadianmum]

I had replied to this message earlier but it didn’t go in the right spot, so I pasted it again.

We started with concerta, then biphentin, then vyvanse and then went back to biphentin. All three had good behavior control but affected his appetite and sleep. I’m not sure we gave vyvanse a fair try since we only tried it for 2 weeks and it was very expensive. When we went back to biphentin things went off the rails and then tried just intuniv and added biphentin back in slowly, now up to 20 mg in the morning. And 2 mg of intuniv at night. His sleep was terrible last night and I feel like his appetite is suppressed again. Did your daughter have problems with appetite and sleep on biphentin as well? If so, did that change with vyvanse or what were the major improvements?

Doctor now wants us to try risperidone. I don’t think I am comfortable with that.

[lovieandbean in reply to Game44]

I have a daughter who sounds very similar. We have tried so many medications. We always come back to Adderall. Only recently have we even been able to go to the Adderall XR with a booster short-acting Adderall in the afternoon to help with the rebound . It isn't perfect, but much better than with Concerta or anything else for that matter (I literally have a spreadsheet with medications AND manufacturers). If I had it to do all over- which I am sure I will when she has another growth spurt, I would take very detailed notes regarding behavior and medication. My memory always betrays me when we are in the doctor's office.

[Game44 in reply to lovieandbean]

It sure is challenging isn’t it! Thanks for sharing. We are back to just biphentin 30 mg. Behaviour and mood are more stable but he’s losing weight again...