Need help with questions re: Seroquel and Intuniv

Jennifer - posted on 08/11/2012 ( 5 moms have responded )

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Hi Everyone



I have read on this site and know that some of you out there have children with ADHD and other needs on Seroquel and/or Intuniv. I need some advice from those who might know



Our 8.5yr old son (whom we just adopted) has ADHD. He came to us on several meds and we have a great psychiatrist who has helped level out some of our son's issues with hyperactivity and anxiety. Our son came to us on Seroquel and Intuniv, both at night.



I am very knowledged in the world of special education, ADHD, etc. etc. and have seen many children on meds-none of Seroquel and none on Intuniv. We have NO idea what these meds are actually doing, or if they are counteracting other meds in his body.

We have an appt with our psych, but not for several weeks, and our son is also starting to have major sleep issues, even with Melatonin. One night (weeks ago) we took away the Intuniv (1mg) and he cried and cried and didn't go to sleep for HOURS.



We limit loud activities at night, have quiet time, a strict routine for bed, and on a good night it takes 10minutes and he's sound asleep. On a bad night, it could take 2 hours.



We feel there is SOMETHING that's not right about these drugs or the combination of them, and then I read the Intuniv is for FOCUS as well, and yet, why would he take that at night?? He needs help focusing during the day! lol...



I love our little guy and am determined to find out which way to go in order to get him off some meds, and onto others that are better.



Thoughts and suggestions from your families would be appreciated!

thanks

5 Comments

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Jessica - posted on 08/25/2012

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Hi Jennifer,

I understand how you feel right now, I also have an 8 year old son, with a lot of the problems you mentioned. I have been dealing with these issues since age 3, so trust me I know how difficult it can be. It is my opinion that a parent knows their child best, and if you have these concerns about the meds, I would talk to a doctor that will LISTEN to your concerns, and address them properly. I think I'm hearing you would rather try a less medication approach to your child's issues. I can relate to that, but please be aware that sometimes children and adults with these types of issues, bipolar or not need the medication to help them. I would recommend finding a good child counselor that has experience with ADHD children. This will help teach your child HOW to deal with all the things you mentioned, it is near impossible for him to "self teach" these types of things. It has been proven in clinical research studies that the combination of the correct medication regimen and therapeutic counseling have much better outcomes than just medication alone. You should be thinking of the meds as a crutch for your child to help make the right choices, not to eliminate the behavior. To address your other questions, you are absolutely correct there are several sleeping aids available and approved for use of children. I would recommend looking into a drug called Clonidine, it is very safe and effective and it does not usually leave the child feeling groggy during the day. However, Intuniv also makes children sleepy, especially when starting the drug or upping the dosage. What other medications is your child taking? You mentioned Meletonin, which helps with sleep, it sounds like the child is getting to many drugs for sleep. the Meletonin would be the first thing I would stop, it could possibly be interacting with the other drugs, or producing an unwanted side effect. Intuniv does come in a 4mg tablet, my son was on that high of a dosage before, but now we have reduced it to 3mg. Again, talk with your doctor before stopping any perscription drugs, but Intuniv has been a life saver for us, and I would definitely consider keeping that. As to your comment of it being potent, I don't think it really is. It is actually a nonstimulant drug that is usually given with a stimulant (concerta, vyvanse, ect) or it is given to children who do not do well with stimulants. I think you need to sit down and organize your thoughts and concerns, and figure out exactly why you want the child taken off the drugs and bring it on a piece of paper when you see the psychiatrist. I would also write down the behaviors that you are seeing that concern you, I'm sure the doctor will do an extensive evaluation, and because all psych conditions are based on what the doctor SEE'S and what the parent TELLS them, everything you can think of needs to be addressed, forget nothing because the smallest symptom or problem, could mean a different diagnosis to the Doctor. I hope this helps, and I wish you the best of luck. Hang in there it will get better! :-)

Jennifer - posted on 08/25/2012

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Hi Jessica



Thanks for your reply. Here's my thing. This medication I'm having major concerns about was prescribed by a PEDIATRICIAN, whom I feel has no knowledge or ability to prescribe psychotrophic drugs. Also, it was prescribed to him when he was living in a very unstable situation in which his foster mom didn't want to deal with behaviors. THis makes me mad. So, I am trying to undo damage that was done, and we HAVE to get him off these meds. He's not the same child he was 2 years ago, he is NOT bipolar, and I feel worried he's on so many other meds to address the ADHD, which he really does need until he can learn coping strategies.



With the Intuniv, I have no idea why it's being prescribed for night use if it's supposed to be used the way you described. There has to be a better "sleep aid" than Seroquel, because he is going to bed by 9 but waking up by 5am. This is ridiculous. He is drop dead tired and doesn't know how to nap. The "sleep side effect" does not work. He WILL get tired, but only after many many activities that day.



WHAT do I even try to conquer first? I want to make sure I have CLEAR concerns and a good path to discuss with the doctor. Bottom line, we want him off both these meds. I feel if Intuniv only goes to 3 mg and he's on 1mg, it must be pretty potent stuff in the drug world. What are the most serious side effects of that. I'm afraid he's going to end up in an iron lung by the time he's 12 with all these meds, which frankly I don't think he needs if there's more of a therapeutic focus on anger, behehavior, coping, attention, and pulling his academics up.



my thing is that he's 8. He needs to learn to deal with the world with out being sadly, a drug addict, at 8 years old. I'm not saying these drugs aren't doing something, and I definitely know the ADHD meds work. I've seen the difference when he's had them or not, but I just think until he's older and CAN learn how to handle disappointment and cope, there's got to be better alternatives that Seroquel and Intuniv. Why both???



Any other advice Jessica? You were really helpful.

Jessica - posted on 08/25/2012

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Jennifer, I am a Nurse and I also have a son with Bipolar combined with adhd. I just wanted to add a few things. First, never change the dose of your child's medication, without discussing it with a doctor. I share your concern and frustration, but you could do serious harm to your child, including seizures, psychotic episodes and suicidal thoughts/attempts. To explain a little more, Intuniv is not used for focus is is used primarily for impulsive behavior, and is usually combined with another ADHD med that does help with focus. It is usually not taken at night, so I don't know why it would be prescribed that way. However, Seroquel is NOT an ADHD med, it is a psych med, belonging to a group of "mood-stabilizers". It is a second generation medication that is used to treat a lot for children with not only bipolar but a mood disorder that is not otherwise specified (NOS). Seroquel is also used to help with anxiety and sleeping. It is a very good medication but it can cause side effects just like all other meds. So these meds combined will help your child not be so hyper and have a more stable mood, and when you decreased the dose, you said he was "crazy nuts" and cried all night. These are all the exact reasons these meds are prescribed. It does seem like its a lot of meds for a child, but I have seen children suicidal, and attempting to harm their parents and siblings because of not taking their medications. So please talk with your doctor. And lastly, your mentioned you knew someone who's child developed diabetes. Yes, that is a side effect of long term use, not only for Seroquel, but the entire class of second generation mood stabilizers. That is not such a bad trade off if you consider the alternative of not using the meds. I hope this helps.

Jennifer - posted on 08/11/2012

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Hi Roxanna

The thing that's bothering us is that WE didn't have our psych. prescribe this. This was prescribed 2 year ago by a pediatrician. He is not bi-polar. Honestly, and sadly, this was precribed to control what others deemed "bad behavior" when he was in a foster home and now he has not learned the regular coping strategies to deal with life that normal 8 year old have. We plan on consulting our psych, but are extremely frustrated because we have been telling him timeand again that we want him off Seroquel and Intuniv, as we know there are huge side affects now and later in life. I had one parent tell me her teen son is now a diabetic because of the Seroquel.

Roxanna - posted on 08/11/2012

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My daughter and I have been diagnosed with Bipolarity of which ADHD is a SIDE EFFECT. To add to my problem I have PTSD, which cause nightmares, which don't let me sleep, which cause me to be irritable and not a very nice person. I take 400 milligrams of lamictal in two dosages of 200 in a twelve hour period. I have been taking the seroquel for over 18 months and the nightmares are very few and far in between. The "S" shuts down that part of the brain (for lack of a better term) that makes dreams vivid.

For as knowledgeable as a person says they are about mental illness, you can't change the childs meds without approval from a Doctor or his psychiatrist. It's like changing the insulin on a diabetic, you cannot do that.

My daughter is 17 and last year she spent a month with my family who do not believe in medication and actually threw her meds away, causing my child to have a psychotic break which took months of further therapy to repair. My ex husband and I have basically told my family that if they cannot follow the rules of medication prescribed by her doctors, they are not allowed to take my children anywhere with out a signed document from them that they would adhere to my childrens health needs.

Please, please follow the directions set forth by his doctors. Living with ADHD combined with Bipolarity is especially devastating to children, especially boys. There is a constant buzzing in your head, voices and impulses that are so difficult to control. Sleeping is the hardest because or brains are runing in lightspeed and we cannot keep up.

Good luck!

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