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Tenex / Intuiv - Regression?

#1

We started my son (7 yo in September) on Tenex 1 mg about 5 weeks ago to help with his impulsivity and body control. Although he was doing well the first 3-4 weeks based on what we saw at home as well as positive reports for his Speech, OT and Social Therapists, we have seen a noticible regression back to his pre-medicine charachterisitcs over the last 2 weeks. The school has confirmed this and last week his theraprists noticed it also.

Has anyone else experienced this? Along with his lack of ability to control his impulsivity, he has become more verbally tempermental.

It took us almost 18 months to decide to give the meds a try after trying to utilize therapy alone.

It makes me so sad and worried about what is happening at school with him socially and what impact it will have on his ability to retain what they are teaching in school.

Any recommendations or expereince with this? Thank you!!


I have already contacted our Pediatrician and the Dr. who started him on the medicine but am waiting to hear back.

#2

My son is also on Intuniv (and is also 7 years old) and it has been working so well for us in terms of both focus and emotional stability. We are on 2mg per day, after being on 1mg for 4 weeks. Our pediatrician told us that she has never seen a child that got effectiveness at the 1mg dose. Is it possible it is time to go up to 2mg per day? We made the increase to 2 mg about 3 weeks ago and saw no extra side effects, just a happier, calmer kid.

#3

My son is 12...no meds due to other medical issues. However I get your worry about school. Everyday until 2 pm when school is released I am on edge about how he will do and if he will be misunderstood or punished for his actions. Even with his 504 we have had issues with the school ie a sub who told him to "just sit there" for the entire class because he forgot his pencil.

Hopefully the doctor will be able to help out and this is only a bump in the road. Good luck I will cross my fingers for you!

#4

My daughter is on strattera too with it. The highest they can go for her. Her Teacher this year is younger and is so positive. I think this is making a difference. Her teacher last year, was older and at the time I thought was trying to help. It seems now she singled her out, which made it worse. She is still struggling socially but her teacher is not blaming it all on her. I wish there was like a support group in the schools. My daughter has had problems with a little boy that was in her class this year and last year. When I picked her up the other day. She saw his mom again, she wanted to tell on him again for being mean to her ect. I told her no . We need to talk to teacher and find out what is going on. We found her outside and started talking. The boy and his mom walked up. We all started talking trying to resolve their issues. By the end we adults were still talking and they were playing. My daughter then wanted to invite him to her bday party. After that chat, I wished I could chat with all the parents in the class. For them to know what she struggles with everday. What we go thru on this journey. Also it would be nice for them to teach their children how to be kind and more patient with her and not alienate her.

#5

I talked to the Developmental Dr / Pediatrician (?) today and we are moving him up to 2 mg. I want to start slow like 1 mg in the AM and 1/2 in the PM for a week. She said his liver is just processing the meds quicker now so its not as effective. I pray that this works and it all makes sense. This drug seems to work for many people!

Thank you!! XX


Nic MacJay said:

My son is also on Intuniv (and is also 7 years old) and it has been working so well for us in terms of both focus and emotional stability. We are on 2mg per day, after being on 1mg for 4 weeks. Our pediatrician told us that she has never seen a child that got effectiveness at the 1mg dose. Is it possible it is time to go up to 2mg per day? We made the increase to 2 mg about 3 weeks ago and saw no extra side effects, just a happier, calmer kid.

#6

I totally understand. We are so fortunate that his school provides a one on one Aide for him in the classroom. She helps with the other children also but she helps him when he becomes a little too hyper or helps him handle some social situations with other kids. It takes some worry away but not all of it.

I worry so much how he interacts with other kids and with other adults who are not aware of his situation. We can only hope that adults become more understanding and aware.

I'm thinking about you and all families in our situation. XX


NinjaSue said:

My son is 12...no meds due to other medical issues. However I get your worry about school. Everyday until 2 pm when school is released I am on edge about how he will do and if he will be misunderstood or punished for his actions. Even with his 504 we have had issues with the school ie a sub who told him to "just sit there" for the entire class because he forgot his pencil.

Hopefully the doctor will be able to help out and this is only a bump in the road. Good luck I will cross my fingers for you!

#7

Good luck but it sounds like this issue was resolved with your help! It is so hard for others to understand what we go through as parents. Even though children are innocent and don't know how to react, adults often times do not either.

We had a parent write a letter to the entire grade's parents about their child with special needs. It was enlightening to know that there are others in our grade in a similar but not same situation.


Suzanne said:

My daughter is on strattera too with it. The highest they can go for her. Her Teacher this year is younger and is so positive. I think this is making a difference. Her teacher last year, was older and at the time I thought was trying to help. It seems now she singled her out, which made it worse. She is still struggling socially but her teacher is not blaming it all on her. I wish there was like a support group in the schools. My daughter has had problems with a little boy that was in her class this year and last year. When I picked her up the other day. She saw his mom again, she wanted to tell on him again for being mean to her ect. I told her no . We need to talk to teacher and find out what is going on. We found her outside and started talking. The boy and his mom walked up. We all started talking trying to resolve their issues. By the end we adults were still talking and they were playing. My daughter then wanted to invite him to her bday party. After that chat, I wished I could chat with all the parents in the class. For them to know what she struggles with everday. What we go thru on this journey. Also it would be nice for them to teach their children how to be kind and more patient with her and not alienate her.
#8


I hope the 2mg works for you! Give it a couple of weeks.

Just on a side note for those with kids on Intuniv, we actually missed my son's dose the other morning. He almost immediately reverted back to being so hyper and unfocused, it was shocking. So I know that the Intuniv is definitely working for him!! However, that one missed dose has now "thrown off" his behaviour for three straight days. It seems it takes a while to get Intuniv stable in their system, but it only takes one day off of it to cause the ADHD behaviours to come back full force.

We certainly won't be forgetting meds again!


MAMAC said:

I talked to the Developmental Dr / Pediatrician (?) today and we are moving him up to 2 mg. I want to start slow like 1 mg in the AM and 1/2 in the PM for a week. She said his liver is just processing the meds quicker now so its not as effective. I pray that this works and it all makes sense. This drug seems to work for many people!

Thank you!! XX


Nic MacJay said:

My son is also on Intuniv (and is also 7 years old) and it has been working so well for us in terms of both focus and emotional stability. We are on 2mg per day, after being on 1mg for 4 weeks. Our pediatrician told us that she has never seen a child that got effectiveness at the 1mg dose. Is it possible it is time to go up to 2mg per day? We made the increase to 2 mg about 3 weeks ago and saw no extra side effects, just a happier, calmer kid.

#9

My 6 year old started 1mg Intuniv in late August. This week we upped the dose to 2mg. I have noticed minimal improvement in focus. His emotional reactivity remains high. He says he is trying SO hard at school to behave, I think it is exhausting him so the meltdowns at home are just letting go of what he has been 'muting' all day. Still, he has been asking for a warm bath to calm down or his calm jar when he feels overwhelmed. It is hard to look for the tiny positives to celebrate but they are there, so I am hopeful!

#10

Can you tell me about the "calm jar"? I like that your son has a plan to manage his feelings.

#11

I found instructions for the calm jar on Pinterest. Essentially it is just any plastic jar filled with water, food colouring, glitter glue, extra glue and glitter. You can add any small toy such as a lego man. It is very important to glue the lid to the jar! :)

All he has to do is pick up the jar and shake it as hard and as long as he feels, then put it down and focus on the glitter as it swirls and settles to the bottom of the jar. It takes about 3 minutes for the glitter to settle. He can then decide to shake it again and repeat if necessary.

My son is very emotionally reactive, and like many of his ADHD peers, very bright and creative. I find he is more managable when he has some input into the schedule or routine. We have a very clear plan for after school and use the timer to enforce the time limits. This also seems to help.

#12

What an interesting idea! Kind of like a Snoezelen room in a jar! Like the note about gluing the lid on. LOL!

3Gkids said:

I found instructions for the calm jar on Pinterest. Essentially it is just any plastic jar filled with water, food colouring, glitter glue, extra glue and glitter. You can add any small toy such as a lego man. It is very important to glue the lid to the jar! :)

All he has to do is pick up the jar and shake it as hard and as long as he feels, then put it down and focus on the glitter as it swirls and settles to the bottom of the jar. It takes about 3 minutes for the glitter to settle. He can then decide to shake it again and repeat if necessary.

My son is very emotionally reactive, and like many of his ADHD peers, very bright and creative. I find he is more managable when he has some input into the schedule or routine. We have a very clear plan for after school and use the timer to enforce the time limits. This also seems to help.

#13

How's it going with the meds, MAMAC?

#14

I went through the same thing with my 7 yr old son. It’s been a long hard road and finely someone listened and he was diagnosed with adhd a little over a year ago. I too struggled with the decision of medicating him but I was at my wits end and he was becoming unsafe. We started off small with concerta but had to increase it within the first 2 weeks. After, the change in his grades, his attitude towards his teacher and school, his confidence and his impulsivity were so incredible that I knew it was the right thing for us. Around six months in (during a growth spirt) his impulsive behaviors and meltdowns started increasing again, after careful consideration we added Intuiv 1 mg to his daily concerta. I’ve noticed it has helped more in the area of anxiety. He’s more relaxed. My personal opinion as far as medications…1. Dosing is highly individual because many factors come in to play with how a drug is metabolized 2. There is no amount (unless you want a zombie for a child) that will make it all disappear 3. When questioning myself about dosage changes now I ask myself: is he safe (ex.not dashing out in to the road) have his grades and confidence in school gone down? Does he seem bothered by his lack of control (he use to verbalize his wishing he had more control? Lastly I check in with myself to see if I’ve been consistent in my interactions with him. This is what helped me decide to stay where we are with his meds currently.
When I feel bad about medicating my child I ask myself, would I withhold insulin from him if he were diabetic?
It’s not easy. Sending hugs.

#15

Seems we are seeing the same kind of regression now. My 8 yr old son has been on 2mg of Intuniv for about a month now (He was on 1mg for another month previous). He seemed great for a couple of weeks, but the last two weeks have been a huge struggle. He is extremely hyper, and completely unable to focus, both at home and school.

Our pediatrician has recommended giving him Adderall in combination with the Intuniv. He was on Adderall a year ago, and it worked very well for focus, but after several month he started have anxiety. We are hoping that the Intuniv will help with that.

My biggest concern is that the Intuniv makes him wake early, at around 5:30am every morning. So he usually goes to bed at 7:30pm at night. The last time he was on Adderall he had trouble falling asleep at night, and I don't think he will be able to manage if he is awake until after 9pm and then up again at 5:30am every morning.

We are so tired and frustrated. I feel like he will never find meds that work for him.

#16

Update on meds - .

The 2 mg of Tenex seemed to work well for about two weeks. We had our fall school conference and the observations for his teachers and his one on one aide, as well as other reading and speech specialists that he is in contact with at school regularly, tell us that his impulsivity is back to levels where it was pre-medication. I have an appointment this week with a different pediatrician in our practice that deals with Behavioral and Mental health issues in children. The previous doctor we saw specializes in Tenex so since I want to change meds I think we need to speak to someone else. We are fortunate that there are two doctors in our practice that specialize in this. He has had no self control the last week. We are at a loss and I am so sad for my son :(

The plus side is that he is where he needs to be academically. We are joining a social group at school to work on his interactions. He is so friendly but sometimes I think his impulsivity scares other kids. I am so worried that he will be outcast.

How does it work when you decide to stop one and start another? Has anyone tried any other meds besides Tenex / Intuiv?

God bless everyone. It breaks my heart that all of our children have these challenges. Life is so hard as it is.

#17

Looking back through old threads....

Just wondering how things are going for you with the Intuniv? Before Christmas we increased my 8yr old's dose again to 3mg, taken at night before bed. Once again, it worked well for about a month or so, then his impulsivity came back as well as a loss f focus. We tried moving the dose to the morning last week, but now we are back to him waking up at 4:30am for the day. The other night he fell asleep at 6:45pm he is so tired. We are pretty much at the highest dose we can give him now.

How are things going with you? Are you having luck with the Intuniv?


MAMAC said:

Update on meds - .

The 2 mg of Tenex seemed to work well for about two weeks. We had our fall school conference and the observations for his teachers and his one on one aide, as well as other reading and speech specialists that he is in contact with at school regularly, tell us that his impulsivity is back to levels where it was pre-medication. I have an appointment this week with a different pediatrician in our practice that deals with Behavioral and Mental health issues in children. The previous doctor we saw specializes in Tenex so since I want to change meds I think we need to speak to someone else. We are fortunate that there are two doctors in our practice that specialize in this. He has had no self control the last week. We are at a loss and I am so sad for my son :(

The plus side is that he is where he needs to be academically. We are joining a social group at school to work on his interactions. He is so friendly but sometimes I think his impulsivity scares other kids. I am so worried that he will be outcast.

How does it work when you decide to stop one and start another? Has anyone tried any other meds besides Tenex / Intuiv?

God bless everyone. It breaks my heart that all of our children have these challenges. Life is so hard as it is.