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Post by crescentcitygal on Mar 19, 2010 19:21:24 GMT -5
I posted here a couple of weeks ago that DS9 has been having a lot of trouble focusing in school and getting any work done for the past few weeks. His teachers say the old impulsivity is back, and it's like he's not taking any medication at all. It turns out it is taking his Daytrana patch at least 3 hours to start working (Mayleng, you were right when you suggested this). He has been on Daytrana (along with Tenex, then Intuniv) for about a year and a half. It always started working within 2 hours (which seems to be typical for Daytrana). I don't understand the sudden change. Metabolism? Growth? Something I'm doing differently in applying the patch that I'm not thinking of? We thought that the switch from Tenex to Intuniv over Christmas break was the culprit, so we briefly switched back to Tenex, but saw no improvement. Last week, I got up at 5 am every day and put his patch on him. He had a great week in school, so apparently the meds started working by 8 am. I'm not going to be able to sustain this 5 am patch administration indefinitely. We saw the dr. earlier this week, and he prescribed a 5 mg Ritalin pill as a booster in the morning. This week was our spring break, so we have been experimenting with what time to give him the pill relative to when we put his patch on him. I'm not sure we having the timing just right, as the results have not been spectacular. I remember someone else here reporting that Daytrana was taking 3+ hours to start working for their child. Has anyone else experienced something similar with this or any other medication? Does anyone have a theory as to why this would start happening suddenly after more than a year?
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Post by Mayleng on Mar 19, 2010 19:25:31 GMT -5
When it starts working, how long does it last? It might also be he needs a dosage change, could you try a higher dosage and see if that helps? Plus do you move the patch around so it is not always in the same spot? It definitely takes longer to be absorbed in the body, but if you are seeing changes after a year, I suspect a dosage change may be necessary.
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Post by crescentcitygal on Mar 20, 2010 11:57:32 GMT -5
Mayleng, the effects of the patch last for about 2 hours after he takes it off, which is typical for the patch. I do alternate hips each day, and try to put it in a slightly different spot.
Perhaps he does need a dose increase. I am a little reluctant to try that before school lets out, however, because once the med is in his system it gives him good symptom control with minimal side-effects. He is so sensitive to changes in dose, so I would prefer to make any dose changes over the summer to give him time to adjust. But he has state testing coming up in a few weeks, so I have to make a decision soon. If the morning Ritalin booster works, I may just stick with that until the summer.
He wanted to sign up for swim team this summer, and practices start at 7 am. There is NO WAY I'm going to wake up at 4 am to put that patch on him!
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Post by healthy11 on Mar 20, 2010 12:40:48 GMT -5
Many parents find that if kids are physically active (as your son would be on the swim team) and not required to sit quietly in a classroom environment, they may not need medication over the summer.
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Post by Mayleng on Mar 20, 2010 17:43:42 GMT -5
I meant how long does the patch last when he has it on (after it kicks in)?
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Post by crescentcitygal on Mar 20, 2010 19:18:54 GMT -5
Mayleng...the patch lasts until I take it off, about 9 1/2 hours later (when he gets home from school).
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Post by Mayleng on Mar 21, 2010 10:29:34 GMT -5
So starts 3 hours late but continues to work for 9 plus hours after. Is it as effective as before when it is working?
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Post by crescentcitygal on Mar 21, 2010 16:46:38 GMT -5
Yes, it's just as effective as before once it starts working. If I put the patch on him 3 hours before I need it to work, then all is well (except I suffer for lack of sleep!).
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Post by Mayleng on Mar 21, 2010 20:38:00 GMT -5
Let us know if the ritalin booster works to solve this problem.
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Post by crescentcitygal on Mar 22, 2010 16:38:59 GMT -5
I will let you know how it works. He had a sub today, so no feedback. However, I called Shire (mfr. of Daytrana) today and told them what was going on. I asked if they had any reports of the patch taking much longer than the expected 2 hours to kick in, and if they had any suggestions for me. They hadn't heard of this issue before, but they forwarded my call to a medical professional (either a dr. or a nurse, not sure), and he did make a couple of suggestions. He said that I might want to request a liver function or enzyme count for DS. He said some people have a higher or lower enzyme count, which can affect metabolism of the meds. Not sure what we would do to solve the problem if his enzyme count were indeed off, though.
He also asked me how I was applying the patch. I told him that I take both halves of the backing off (the backing is cut down the middle), then I walk to DS' bedroom and apply the patch while he is still sleeping. He told me that they recommend removing one half of the backing, placing the exposed adhesive on the child's hip, then removing the other half and pressing the remaining adhesive onto the hip. This is what the directions say as well, but I always found it very difficult to do it this way. He didn't say this, but I wonder if my touching the adhesive part with my fingers (I try to hold it by the corner) is removing some of the medication and causing it to enter his system more slowly. I will try following the directions exactly to see if it helps at all.
I have found it very difficult to remove the backing on the patches for the last month or two. Although I checked the lot numbers and determined that my current box was not included in the recall (not sure about the last one), I wonder if some of the medication has been lifting off with the backing. We are almost ready for a new box, so I will be interested to see whether or not the problem persists with the new patches.
I may not give him the Ritalin booster for the rest of this week so I can evaluate whether or not applying the patch more carefully helps get the medication in his system more quickly.
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Post by crescentcitygal on Mar 22, 2010 16:45:25 GMT -5
Healthy, I forgot to reply to you. It's possible DS will not need the meds over the summer. Last summer, I only gave him his meds on days he had piano lessons or church/Sunday school. But I think he may need his meds at least for the first couple of weeks of swim team, until he understands expectations and gets into a routine. This is his first year on the swim team (first year he has ever expressed interest), and I want him to start off on the right foot with the coaches, know what I mean? When he is involved in an activity with lots of other kids, he tends to be much "sillier," and is less inclined to follow directions. I will just have to see how he does and determine whether or not we want to give him a medication break this summer as well.
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Post by healthy11 on Mar 22, 2010 17:46:03 GMT -5
crescentcitygal, I understand. Ironically, we signed my son up for swim lessons when he was younger, but while he liked playing in the water, he was always "shivering" after a short time...he never made it onto the swim team. The swim instructor commented that really slender young kids sometimes do better after they "put some meat on their bones." While meds are in his system, my son's appetite is noticeably less, so all in all, it seemed like another sport was probably better for him...he ended up doing taekwondo for exercise instead. (Even now, at age 19, he's still really slender, being over 6 ft. tall but around 145lbs. and he still freezes even in tropical waters, wearing a heavy wetsuit when he scuba dives!)
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Post by crescentcitygal on Mar 26, 2010 0:20:10 GMT -5
Healthy, my DS is also very slender (he doesn't get it from me...LOL!), so he may have the same problem with shivering in the water as your DS! I'm a little worried about swim team because this is his first year, and since he's 9, he will have to swim 2 laps of the pool. He has always loved to swim, but is not a very "graceful" swimmer (he's just really good at "not drowning").
I sometimes feel guilty that I didn't encourage him to participate in more team sports at a younger age, but he was (is) so impulsive and immature for his age that I didn't think he was ready. Now that he is finally expressing an interest, I want to let him do it, but fear that he is so far behind since the other kids have been doing it for so long.
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Post by Mayleng on Mar 26, 2010 5:37:36 GMT -5
It's never too late to participate in sports.
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Post by healthy11 on Mar 26, 2010 7:32:16 GMT -5
Mayleng, I agree, but I keep hearing about a lot more "intermural" budgets for schools being cut, so that the only things they're supporting are varsity/competitive teams. Programs through YMCA's are generally good for learning basic rules and skills of different sports, without intense pressure to win. The benefit of sports like swimming and martial arts, especially for children with "issues," is that they give kids a chance to participate in a group activity, but it's still their individual effort that matters most. That's a lot "easier" to handle, than, say, being the goalie for a soccer team, who allows the opposition to score a winning goal, and then they incur the frustration of the rest of their teammates, in addition to their own disappointment.
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Post by Mayleng on Mar 26, 2010 17:19:56 GMT -5
I agree.
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Post by crescentcitygal on Mar 28, 2010 17:29:59 GMT -5
Well, you're not going to believe this, but changing how I apply the patch actually seems to be working! Perhaps since I had been touching the surface of the patch, the oils from my skin were interfering with absorption of the medicine? I did not give him the short-acting Ritalin booster at all last week...just applied the patch more carefully, removing one side at a time without touching the surface, and his teachers said he had a great week!
I could tell the difference myself this morning at church. The children's choir had to sing at 8 am. I applied his patch at 6 am, and by the time church started, he was very much focused on the task at hand, calm, and well-behaved.
I am REALLY hoping that this is the real solution and not just a fluke. After all the med trials and changes we have been through over the years, it would be wonderful to finally have an easy fix to a medication problem! I'll let you know how this week goes.
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Post by healthy11 on Mar 28, 2010 17:36:09 GMT -5
Glad to hear it! Keep us posted.......
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Post by Mayleng on Mar 28, 2010 18:05:20 GMT -5
Thats great, and good to know too.
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Post by crescentcitygal on Mar 28, 2010 23:21:50 GMT -5
DH keeps saying that the improvement can't POSSIBLY be due to changing the application method. He says it doesn't make sense. But it's the only thing I've changed, and several of DS' teachers have commented on the improvement (without knowing that I changed anything).
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Post by Mayleng on Mar 29, 2010 5:44:22 GMT -5
Time will tell. If your finger was removing some of the meds when you touching the patch, it does have an impact. It does not take much - a pill is very small and yet it lasts 8 hours. So I can believe that if you removed some of the meds on the patch it might be less effective.
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