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Post by kc4braves on Aug 21, 2012 23:38:00 GMT -5
I haven't be on the site for maybe a year, I guess because things were going so well. DS now 16 had a very good sophomore year. He is ADHD-combined. School went well, his temperment was good mostly and he stayed on Concerta the entire year. I guess he has been back on Concerta since late fall of 9th grade. He had a good summer, played alot of golf and improved, drove us all over creation with his permit and improved... He got his license first try and has been making some short trips alone.
However, things seem to have suddenly changed. Mind you I had seen a few signs that the meds are not working as well but we have hoped everything would continue to be ok. School started last week and with that I have seen attitude change, lack of focus, inability to overcome problems ( which is one thing he had learned after having ADHD struggles for years), need for guidance and help with math again ( hasn't needed any help from me since 8th grade!), completely lost his foucs and control at golf Sunday throwing his club and beating one on ground ( very unusual behavior for him andnever tolerated by us). He is still doing well with his driving and I haven't seen any grades yet but today at golf lesson he argued with the instructor the entire hour, was cocky and rude. Instructor even asked me when he had gotten mouthy and smug. I answered...last week! He never did get foucused or under control this evening until after we were done. I drove home and he finally calmed a little. I asked what was going on and what, if anything, i could do to help him.
He says he doesn't think meds are lasting very long. He takes concerta between 7-7:30 and he says he feels goofy by 2 which is the start of 6th hour. Things had been going so well and he has matured. College has been seeming more and more possible. He took the ACT this summer just for practice and made a 22...which I found very hopeful. He is now in NHS but still taking regular ( not advanced) classes. He has been improving socially, too. Agreeable to be a little more involved, more active at church in groups ( he doesn't generally like big groups), wants to go to school fottball games this year...all good, positive things.
So...what can we do about meds, if indeed they are part of the issue which I suspect? He takes 72 mgs of concerta and has for close to a year. He can't go up anymore. He is concerned because he says, " I have already tried everything, MOm. What can we do?" He tried Straterra over teh summer between 8th and 9th grade and into the fall. We saw some good changes but had to add some stim for focus. He loves to read but couldn't without the stim. However, we had to quit the straterra due to frequent migraine-like headaches with nause and terrible motion sickness. Pretty much went away when he stopped straterra. He has been on concerta since then and had taken it previously. He has taken metadate cd in the past with great results but had to take twice because it only lasted about 6 hours. Vyvanse was terrible. Took dexedrine spansule at 7 and 8 when first diagnosed...terrible mood swings, pitty parties, etc. as it wore off. Haven't tried Adderall and do not wish to after the results we saw with these two. Hmmm...what else has he tried? Tenex......worked well for hyper, impulsive behavior but he had to quit due to terrible panic attacks at night and inability to stay asleep. What else is there? What would you try? Waiting to hear what doctor thinks of this situation but just thinking. Thanks, for your input.
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Post by healthy11 on Aug 22, 2012 8:07:07 GMT -5
"Waiting to hear what doctor thinks of this situation.." Good idea. I hope you're contacting a specialist, like an adolescent psychiatrist, and not a general pediatrician.
In the same way that your son's metabolism is apparently changing as far as his reacting to the Concerta, perhaps his response to other medications (either ones he tried before, or new ones) would also be different now. Presumably, at age 16, your son has entered puberty, but boys typically keep growing through their teens, and his hormones are going to be at different levels now than when he's older. Testosterone levels do have an association with anger, as well. There are some mental health conditions that may appear in late adolescence or young adulthood, too, so I think the best approach for you and your son would be to schedule a visit to the doctor soon, and see what the doctor recommends... (I know some kids take a "booster" dose of stimulant meds in the afternoon to get through their homework, if the morning dose doesn't last long enough...maybe that will be an option?)
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Post by kc4braves on Aug 22, 2012 14:54:03 GMT -5
We see a child psych provider that we have used for several years and like very much. Oddly we just saw her Tuesday of last week and made no changes because we thought all was well. He has reached puberty. His voice changed between 8th and 9th and he is having to shave every week now. He is still small but is growing. 5'5" starting junior year and 115 pounds. He has always metablized meds quickly. I think this may be the longest he has stayed on one med. 72 mgs is the highest dose he has taken. Not sure she'd even want to add a booster to that dose by possibly. We will see. Thanks for your comments.
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Post by jw on Aug 22, 2012 18:37:05 GMT -5
Hi,
I would look into adding a booster in the afternoons. My ds takes Vyvanse in the monring (60 mg, so not the top dose but close to it) and has started to need a shortacting dextroamphetamine in the afternoons when he has a lot of homework. His doctor didn't think raising the dose of Vyvanse was the answer but did not have a problem with suggesting the booster dose. Depending on what ds needs to do, and how much concentration he will need, we adjust the booster anywhere from 10 to 20 mg. It has worked out OK for him.
It is also nice to have some of the short-acting around the house because he can sleep in on the weekends and take that if he has homework.
Good luck, jw
P.S. My ds has not started school yet, but I know from friends that junior year can be a year with a lot of personality and motivation changes, too. So it may not be all medication, it may in some part be what kids go through at this age.
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Post by kc4braves on Aug 22, 2012 20:15:59 GMT -5
I hate to give a booster, though I will if necessary, because he already sleeps way less than he should. He could actually take it himself without school involvement since he leaves the campus at 2 for golf. I wonder if he took a booster then, if he would still be able to get to sleep. He is usually up at 11 even though he takes a med to help him sleep. I'm ok with this sometimes but think he needs to have some days where he gets alot of sleep and that only happens in the summer.
I expect hormones to kick in even more but I also expect him to learn to control that and show respect whre respect is due. Arguing with the instructor was disrespectful. He said, " But I thought I was right." I told him that that was fine...you can politely express your thought that the iinstructor may be misunderstanding the problem or your question, but you do it once, with respect and let it go. The golf pro is a pro....you are not. They played in college and get paid to teach now...you do not. They shoot 25-30 strokes better than you so....maybe you should listen. Last times the instructor helped him he listened and improved about 10-12 strokes. That is big and he knows it so it is not that he generally disrespects this person or has any reason to disrespect them. it is so weird. He is generally very quiet. And generally isn't very competitive spirited so doesn't lose temper over sports.
The doctor wants us to give it another week or so...see if he can get it under control with restrictions as needed..then if not, we can make med adjustments. I know that is probably wise but Ii so hope he doesn't dig himself a hole. No grades are posted yet and i get vague ansers when I ask questions.
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Post by kc4braves on Sept 16, 2012 11:59:03 GMT -5
Well, we have been watching the situation for 3 weeks now. I'm still very uncertain as to what should be odne. We have not changed anything as of yet. The doctor wanted to wait and watch since school had just started, etc. She said we can try adding a booster first then consider med changes.
he is doing ok...but is not as sharp as usual. Not sure how to explain what I mean. His math and chem are still going downward. Alg 2 is now a C and Chem is a B by a half point. He keeps telling me not to worry that he will pull it up but I think he is trusting in how things have been the last two years not how things are now. If that makes sense....and he is hoping. He says he understands Alg 2 but is making lots of careless mistakes. but he doesn't feel the chem teacher explains anything clearly. I know that the things I'm finding that they have done in chem are not hard concepts IF they are presented well. So we are going to go over some of it today.
I hate changing meds..hate hate hate it. Especially now with school in session. But I just have this feeling that the issues are pointing to the meds. Attitude maybe hormones but we have always been able to grade the meds by math. The one year he "failed" the standardized testing was the one year he forgot to take his stim before the test. He struggled with math back then but always passed and always passed the standardized test. My daughter is the same way...forget the meds..forget the math.
The other problem we see is that he can no longer play golf at the level he was. It's like the ability just left him. Something similar happened with my daughter in soccer a few years back. When the meds were "fixed" her ability returned. Don't misunderstand, we do not take meds for golf, it is just another indicator.
I am having him try a booster to see if he notices changes but that will only help with after school issues...if it helps. He has math and chem in the morning so that has to rely on the efficacy of the concerta.
I know the doctor will listen if I have a suggestion. I am usually able to discuss things well with her. However, I'm not sure what to try since Concerta is longer acting then the other choices and it's not acting long enough and well enough. How do you go backwards. metadate CD was awesome but it was a twice a day med for him. Can't/won't try Vyvance, Adderall or dexedrine spansules again...but open to other suggestions or combinations.
Thanks.
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Post by majorv on Sept 16, 2012 22:52:31 GMT -5
From my personal experience with our son, the junior year was when we started having more problems with meds and his attitude.
Even though Adderall is in the same family as Vyvanse, don't be too quick to dismiss it. We thought the same thing when we had to find another med after our son had been taking Adderall XR successfully for several years. Since my son had had pretty good success with Adderall XR we thought we'd tried Vyvanse. He had to stop it after 3 months. At the dosage he needed for it to help came unacceptable side effects. It never really worked as well as we thought it would either.
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Post by healthy11 on Sept 17, 2012 7:44:18 GMT -5
Majorv gives good advice; everyone's reaction to medications is individualized. In addition, one's responses can change over time, especially during/after puberty. It could even mean that a med your son took before with poor reactions could now be better tolerated. As far as other meds, I'm not sure if Focalin or Daytrana would be helpful. Being a patch, the Daytrana could be taken off earlier if you found the effects were lasting too long, and interfering with sleep, but it also takes time to "ramp up" when the patch is first applied, so some people have found that another faster-acting oral stimulant needs to be taken with it.... Maybe ask the doctor if Concerta with a booster of something else could be used?
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Post by kc4braves on Sept 19, 2012 8:08:19 GMT -5
He has taken Daytrana before and my daughter takes it now with a morning booster. However, one patch is not enough stim for him. Concerta with a booster could work. We have been trying for golf but I'm not sure everything is really ok even earlier on. Both Chem and Alg 2 are in the morning so not sure what to think. I hesistate to rock the boat because he has 100 averages in his afternoon classes which are also his favorites: US HIStory and International Studies. English is also going well. But these are his strong suits...English until they write papers only...and he might pass them without meds. Still changing meds is a scary proposition. I don't think we could try Adderall. Dexedrine caused horrible mood swings, the rebounds resulted in dented walls, misrable family and child.....I know he was young then but it was terrible. Vyvanse as a younger teen was more of the same. We made it two weeks on that and his grades and self-esteem plummeted. He cried hopelessly if anyone even asked how his day was. I just don't know that I could even suggest it. These have been our two worst med attempts. Straterra would be the third. Took forever to titrate. Sufferred teh attitutde then finally saw progress with a low stim.....but he had migraines and motion sickness as well as shakiness ( we thought his bllod sugar was messed up and even had that checked). It was starting to affect his life so negatively that he had been referred to neuro for eval. Before doing that, I made the decision to stop the straterra despite the good school results and teh weight gain and see if it was the cause. Soon as we stopped it, the migraines and motion sickness were pretty much gone. He has a headache occassionally but no more dibilatiting problems. So.....this it what scares me.......and why. And he trusts me...I hate to suggest he take something that I already fear is a mistake. Maybe I'm limiting him with his med choices but....
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Post by healthy11 on Sept 19, 2012 8:32:45 GMT -5
I realize it's not always easy to find, but your son really sounds like he needs to have his medication management overseen by a good psychiatrist, and not just a pediatrician or family practitioner. I'm not trying to downplay your role, because I do think parents know their kids the best, but at least by having an experienced professional doctor who specialized in mental health issues and meds, you would have a trustworthy resource to consult with. At the moment, it sounds like you're more knowledgeable/informed than the doctor...
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Post by kc4braves on Sept 22, 2012 20:12:35 GMT -5
We are using a mental health doctor that we like very much. We tried several other doctors when she had her baby two years ago and that waas a miserable time. I just like to have some idea what I want to do before she makes suggestions. I'm just like that...or maybe I learned to be like that when we did have ped doctors that i did need to guide. I like to do my research and know what's going on. Not crazy about being lead by the doctor. I mean I want the doctor to know more than me and be able to logically answer questions but I like to know what's going on and what we are comfortable with. Does that make sense? I dread the day that she says my son is too old to be under her care.
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Post by healthy11 on Sept 22, 2012 23:36:26 GMT -5
I do understand what you mean about researching and wanting to know what's going on; I'm the same way about many things, but when it comes to medications, I recognize how complex the topic is. Although I'd describe my internet researching abilities as very strong, I don't have the professional training of a doctor, nor the specific expertise in mental health that a psychiatrist has.
I realize how fortunate we've been, for my son to be able to see the same psychiatrist for over a decade. His practice encompasses children/adolescents/adults. He is not only cognizant about general subjects, like newly approved drugs, etc., but he is aware of my son's specific past treatments/reactions/responses, and he discusses pros/cons/interactions of different meds with us. He gives us information, but ultimately does (now that my son is in college) leave the decision about what to use up to my son.
I was thinking back about other ADHD medications that my son's Dr. has discussed over the years, which you haven't already tried, and besides Focalin, I recall Intuniv being mentioned. Maybe you can ask your son's Dr. about it?
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Post by kc4braves on Sept 25, 2012 12:18:37 GMT -5
He has not tried Focalin. But he is currently taking 3mg on Intuniv with the Concerta. He asked to try it last year because he didn't feel the stims were working as well. We aren't sure if the intuniv helped or not but we haven't removed because he really did well last year despite his concerns about focus. Also, even though my daughter only took 2 mg of intuniv we have yet to be able to successfully wean her off. She is taking 1 mg and we have just left it because going off of it is so hard and she is doing well at present. We just never really thought we saw much change WITH it. So we wanted to get rid of a pill but when we take it away or she forgets it...wow...what a bad day. We need a long break where she has no responsibilities to let it get out of her system. Oh...on 2 mg she overfocused and took hours to do her work.
Back to him, I guess Focalin might be a reasonable choice for him. I have to remind myself that my two kids are two different people. It worked well for dd initially but is waaay too short acting for her with all that she does in the evenings. It was good for maybe 8 hours which meant when school was out the good effects were gone. Then she would need boosters twice to get through her activities. It may work for him, though. I just keep remembering having to take Metadate CD twice a day and have my doubts. Of course, I'm not opposed to twice a day if it works. Now that he is driving and coming home for lunch, taking a second dose isn't a huge deal anymore.
I definitely do rely on the doc for what to do and what to try. I like that she works with a research facility because she knows about all the new things and combos of things that other doctors seem unaware of or are unwilling to try. Like the doctor we tried once who basically told me he would not prescribe two meds for ADHD ( ie a booster and patch or Intunive and Concerta) that parents need to accept that meds only work 8 hours and basically our kids are good for nothing after that! Ugghh... we really need to keep this one!
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Post by kc4braves on Oct 18, 2012 15:23:37 GMT -5
Ok. What do y'all think of this? We saw the doctor again for both kids. I know that my son could continue on the Concerta s he is now...but I still don't feel it is optimum and i feel we are constantly waiting for the other shoe to fall. Thins don't seem to be going as well as last year in his technical classe ( math and chemistry) or in golf. He has gotten it together a little better with help from us but he just doesn't seem as able to handle things as he was last year. He had felt the Concerta wasn't working as well last year so not surpised in some ways to see more issues now. So...
His doctor asked us to try vyvanse again. Her reasoning was that since Concerta is the longest acting methylphenidate med and it is no longer working as well, that Vyvanse is a good choise since it is in another med group and long lasting. I just looked at her blankly since it was such a bad fit when he tried it before in 8th grade and since Dexedrine was also a very undesirable med as a child.
My thought has always been that since the methylphenidate group works for him and always has, that we needed to stick with it but maybe with meds with different deliveries at different times or maybe in conjunction with something else like intuniv, etc. So her suggesting Vyvanse again just kinda blew me away. She thinks that since the problems with this med group were before puberty, he may tolerate better. My husband said no way were we trying that during school. He is hanging in there with the concerta but if Vyvanse is the same as before, he will tank. He only took the Vyvanse for 2 weeks in 8th grade and it was a nightmare. He was a complete emotional basketcase and his grades dropped. We saw nothing good...and pulled the plug on it after two weeks when he was sad and bawling. The dexedrine spansules in 3rd grade did show progress in school over nothing ( since he was newly diagnosed) but the mood swings were terrible...and the med benefits short lived. He threw things, had fits, pitty parties of major proportions. I nearly lost my mind the year he took that. When he finally felt ok taking pills we swtiched to the methylphenidate group and life improved alot. Maturity also played in and at 16, he seldom if everhas a temper fit or a pitty party.
So am I nuts for not wanting to take that chance again? I she right? Is it the best idea? I know some of you have also said he may tolerate things differently now but 8th grade doesn't seem that long ago to me. He's also not sure if he wants to take the risk. Would you try something like that during school or even during only a 5 day break??
What we decided to do for now is try Focalin Xr 30 mgs in the am and 10 mgs at noon. Not sure how this will work, but it is worth a try I suppose. Do you know how that dosage compares with the 72 mgs of Concerta he was taking? Is there much chance for success? I guess 40 mg of Focalin is the most he can take so..we will see.
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Post by healthy11 on Oct 18, 2012 16:41:18 GMT -5
I'm not a doctor, but I attended a Chadd meeting earlier this week, and the speaker was a neuropsychiatrist who specializes in medication management. There was a parent who asked the same kind of question as you, about whether a child who has had a bad response to a medication in the past, should ever try taking it again. The neuropsych said he frequently "revisits" medications, because circumstances change over time. He pointed out how important it is to keep good records, especially when starting or changing medications, because sometimes what seems like a small thing (ie, is it taken before or after breakfast) can have a big impact. He said that studies show different absorption rates when people take medications on an empty stomach versus full stomach, etc. and that can give you a different response. He actually said most "negative responses/side effects" occur when meds are at their "peak concentrations" and changing the dosage can impact when the peak happens. The neuropsych specifically said that sometimes when people reach the limit of an individual med, he's found it helpful to add a different one. He mentioned how stimulants and non-stimulants can be used together (like Focalin & Intuniv) because that often allows the dosage of the stimulant to be reduced, while still providing good overall ADHD outcomes. The neuropsych also mentioned a new DNA test that some of his colleagues are starting to use, and maybe it would be good to ask your doctor about it: millermom.proboards.com/index.cgi?board=general&action=display&thread=13163
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Post by kc4braves on Oct 18, 2012 17:37:40 GMT -5
I guess I understand retrying a med that didn't work as well within a group of meds that work. Of course, I am not a doctor nor do I play one on tv. It's just hard for me to go back to a group of meds that have been so bad. I guess we will if we have to. We retried guanfacine. It was terrible in the Tenex form for ds but when Intuniv came out, he agreed to try again. No side effects that we can see this time around. Not sure how much it helps but none of the problems we had in the other form. I guess I'm just fearful.
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