Does it make sense that a late medication dose is as good as none at all?

Discussion in 'General Parenting' started by gcvmom, Nov 6, 2008.

  1. gcvmom

    gcvmom Here we go again!

    On the days difficult child 2 forgets to go to the office to get his lunchtime dose of Seroquel XR, I know right away when I pick him up from school at 3pm because he acts like someone with bad ADHD.

    Even when I give him the missed dose by the time we get home at 3:30, three hours after he was supposed to take the medications, it's like he never fully recovers and gets back to where he would usually be had he taken the medications on time.

    Does this make any sense? Has anyone else ever had this type of thing happen?
  2. susiestar

    susiestar Roll With It

    He may be so overstimulated that even the medication isn't enough to help. Is it possible to give him the extended release seroquel in the morning, and then have him take a dose of regular seroquel at school? Not sure what he takes when, but since it is an extended release, I just thought that if it was given in the am you would have better control and coverage.

    It DOES take time for the extended release medications to kick in, and if he is already in full tilt, then it just may not be enough to reset his circuits.

    I know it would be a pain, but could you call school every day and have them call him to the office for a message, or take a message to him? You could set up a code (think James Bond or some other cool spy) that isn't "Go take your medications" but would mean that to him.

    I really, really, really HATE that schools think kids should be responsible enough to go take their medications, and won't remind them. Kids are KIDS. BY definition they are NOT going to be responsible enough to take charge of something this important. Just in my opinion, but...

    Maybe brushing after school and some of whatever sensory stuff calms him would help after his snack?
  3. gcvmom

    gcvmom Here we go again!

    Susie, he takes 700mg Seroquel XR at bedtime, and 400mg Seroquel XR at 12:30 when he goes to lunch. So it's ALL extended release.

    We upped the bedtime dose in hopes that he'd get a little longer coverage than he was getting before (seems to wear off after 16 hours). I'm not sure that's the case.

    But when he takes the lunchtime dose on time he really does pretty well the rest of the day. He can get his homework done. He can participate in sports. It's almost like things are back to normal.

    But on days like today, where he forgets the lunch dose and doesn't get it until later, it's like he's got really bad ADHD -- can't focus, cant' stay on task, constantly talking, getting up, easily distracted.

    I don't dare increase the wee bit of Daytrana he takes during the day (about 5mg) because it pushes him toward hypomania (yet he does need that little bit, or else afternoons are a struggle again).

    One day he forgot the lunchtime dose of Seroquel XR and I didn't bother giving it to him at all, and he was even less stable the next day and definitely hypomanic, even though he got the lunchtime dose that next day.

    I'm just amazed at how sensitive he seems to be to medication levels fluctuating. If this is truly the case, it really underscores how fragile he is and how real this illness is.
  4. witzend

    witzend Well-Known Member

    It does, actually. I think of it the same way I think of pain medication. One dose might help right away, but if you wait too long, three doses won't be enough. It's easier to keep the hyperactivity at bay than it is to get it back under control.
  5. gcvmom

    gcvmom Here we go again!

    Witz, that's certainly how it feels with him. I haven't talked to the psychiatrist about it yet, but plan to. I emailed his teachers tonight to let them know what the direct results are for him missing his scheduled dose. I don't think they really get it.
  6. witzend

    witzend Well-Known Member

    I hope that they will listen. It's absurd that their not giving him his medications as required is still an issue. It shouldn't be that difficult for them to figure out something that works. They're the adults!
  7. Marguerite

    Marguerite Active Member

    Our psychiatrist explained it to us by drawing a graph of blood levels. He showed how the medication dosage raises the blood levels and showed us the peaks and troughs you get with the doses spread out during the day. He then drew a horizontal line through the graph to show the required blood level we had to aim for. Whenever the blood level dropped below that horizontal line, the ADHD behaviour would return.

    The thing was, WE could see how there had to be a fairly large initial 'loading' dose to get the blood levels up high enough so we didn't see ADHD behaviours. But then the levels would drop through the morning and regular small doses would be needed to maintain the dose. If the levels were permitted to drop, such as when one or more of these later doses were missed, then the blood levels would drop and the next small dose would still be too low to bring his levels back up to above that line.

    So in summary - the first dose or doses in the morning are always a larger loading or priming dose and later smaller doses spread through the day are smaller maintenance amounts. It is all finely calculated to keep the total dose through the day as low as possible (we don't want to give our kids more drugs than we should have to) but still work without risk of the blood levels dropping too low and problem behaviours breaking through.

    The wheels fall off when the medication regime is not followed.

    We can try to put in failsafes, including printing out dosage timetables, setting all the arrangements in place that we can with whoever has custody of our child during that period, but it all comes down to a need to trust the people who are caring for our child that they will meet their obligations.

    What really makes me angry - the attitude too often is one of, "It's not as if it's a serious problem like diabetes or epilepsy."

    It shouldn't be any different - this is medication that has been prescribed by a specialist to treat a serious problem. The child suffers as a result, his education suffers, his self-esteem, often safety of the child and others also suffers. Why should we be expected to tolerate this?

    When we went through this with difficult child 1 we had a series of problems. First we had union issues when the schoolteachers were all ordered by their union to refuse to medicate all children in the school on the grounds that it's not a teacher's job and it's too easy for things to go wrong. In our state we had no provisions made for school nurses or equivalent. Thankfully husband worked nearby so difficult child 1 had to walk from school to his dad's work to get his medications - three times during the school day. The principal was staunch to the union but sympathetic; her son, difficult child 1's best friend, walked with him. By the time difficult child 1 moved to high school the problem was resolved. I and other parents had been writing lots of letters and looking into the legal problems this was raising, including who was responsible for the damage this could cause. Yes, they were concerned at what could happen if the wrong child got dosed with the wrong medications, but what about the right kid not getting dosed? As I said, what if they failed to medicate a brittle diabetic? An epileptic?

    By high school there was a staff member designated and trained for the task, as well as a lot of rules and regs. However, there was still an attitude of "the child has to learn some personal responsibility" and no chasing up of difficult child 1 when he failed to show for medications. Or there would be times he would show up for medications and the staff member would be away from her station (however briefly). If difficult child 1 missed his medications they did not chase him up, with the result that often he was not properly medicated during the day. In vain we complained, threatened, exploded and raged at the school. Finally we bought a very expensive watch for difficult child 1 which had multiple alarms. We set them so he could have an alarm to warn him of each required dose. This worked a lot better but there were still problems - teachers complaining if the alarm went off a few minutes early and interrupted her going over the end of the class, or again difficult child 1 cancelling the alarm while on the way to see the nurse only to find her not there and still not get dosed.

    We finally had to solve the problem by getting his medications compounded for sustained release. It was the only way.

    I'm still very angry about this issue, because it is part of the culture of "kids shouldn't be medicated for ADHD" because if your child has another more obviously physical health problem, then of course the schools will be supportive and medicate the child. But the schools still behave as if ADHD is a learned behaviour problem and all your child needs is to learn a bit of personal responsibility.

    You have two choices:

    1) Fight this legally. Point out that the school, in requiring your child legally to be in school, has a fiduciary duty of care to ensure that such needs as medication are dealt with, since they have removed the child form parental custody during the day. Good luck - this is a tricky one and won't win you friends, except form other parents and more enlightened teachers.

    2) Find a compounding pharmacist and pay for private compounding of the medications so you can ensure that one dose in the morning will do the job.

    It's not fair. You shouldn't have to do this. But your child is more important than fighting a principle.

  8. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    I like Susie's idea. If you have to call the school every day and remind the nurse to call your son in for the medications, that's what you have to do now. Maybe she/he will get so tired of you calling every day, they will begin to do it on their own. At 11, I'm not sure my difficult child would have remembered every single day. How long has he been taking this lunch dose?

    What about letting his teacher know that, when she brings the kids down for lunch, he has to stop by the office first. Although he may not like that becuase he won't get a "good" seat. But if he has a buddy, maybe they can save him a seat. Or, when the teacher goes to the lunchroom to get the kids after lunch, she can gently remind him every day to stop by the office on the way back to the classroom.

    I would think speaking to his teacher and letting her know how serious the consequences are when he doesn't take his medications would make her willing to remind him before or after lunch. If that doesn't work, set the alarm on your cell phone and call every day.

    My son has not had scheduled medications at school so I'm not sure about the responsibility of the school to remind kids about the medications. But, I can surely, especially from the explanation that Witz gave, understand how negatively he is affected by a missed dose.

    I'm sure that you will find the solution!

  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    There is no excuse for the school nurse not to give him his medications. I'd try to schedule an IEP where somebody has to make sure he gets his noon medication and I wouldn't sign it until I got that in the IEP. If necessary, I'd bring an advocate. This is to important for him to skip. We all know that difficult child's tend to forget things. Why punish him or you for his disorders?
  10. busywend

    busywend Well-Known Member Staff Member

    Even in high school the nurse will call my difficult child down is she has not shown up for medications.

    Seems irresponsible of them to not follow through.
  11. susiestar

    susiestar Roll With It

    MANY schools in our neck of hte woods refuse to call a child for medications. They keep telling parents that it is the CHILD'S responsibility to remember to go get his/her medications. That the adults are too busy to remember. Now our elementary doesn't pull this, but there is one in town that DOES. They won't even call a 7year old, because if he doesn't remmeber maybe he doesn't need it. (someone actually SAID that to me!).

    It is something I would fight tooth and nail over, to get the adults to quietly send my child to the office for medications. It is just so important.

    With what you are seeing, your son's system is very sensitive so it makes skipping doeses even harder on him. The school won't LIKE your calls, but maybe they will be more help if you do call everyday. Also, maybe call the state Dept. of Ed to see THEIR position on children having to remember, all on their own, to go get their medications. Just a thought.

    Hugs. It shouldn't be this hard.