Supposed to start dd on methlyphenidate--lots of hesitation on my part

[JustMe]

Dd does NOT have ADHD--not even the inattentive type. This is according both according to me and according to evals. She does a diagnosis that involves processing issues and executive functioning issues. An example would be that she has difficultly learning new abstract material. However, for anything not in that category, her attention is fine. Anyway, none of that is being questioned. Her dev pediatrician has recommended a trial of methylphenidate. He thinks it will help her learning. I can find research out there to support this. I have tried neurofeedback and other methods with none to very limited success/difference.

All this to say, I had gotten to a point when it seems like we have to try it. The dev ped thinks there is a very good chance it could improve her functioning significantly. How can I say no? However, now I have the prescription and just don't want to fill it.

Dd's behaviors do not bother anyone. I do not think teachers will notice any changes. We agreed to start over winter break--which I also have off--for this reason. However, I am concerned that teachers won't notice changes once school starts, though. Also, since the changes we are looking for are more subtle, I hope I am able to identify any positive changes. The dr. did give me those med. tracking beh. forms, and I am glad it has the side effects to look for on it..but still.

I could write more, but will stop for now. I need encouragement to try it or even reasons not to. I love my daughter exactly the way she is and don't want to do anything to harm her. I also don't want to be in the way of a chance to improve her functioning/quality of life. Dd is on board with trying the meds.

Thanks!

[egoldber]

Well, the good thing about a med like methylphenidate is that it is very quick acting and also quick to leave their system. It's not like an SSRI where it can take weeks to build to the effective dose and then you have to wean if you want to stop. You can just stop taking it.

If it makes you feel any better, both of my kids take a long acting form of methylphenidate (Concerta) and it has dramatically improved their quality of life. Younger DD was classic hyperactive ADHD, so she was an easy choice. Older DD was harder. Her issues are more subtle, she was generally a good student, and was not at all obvious. A low dose (for her weight) of methylphenidate really does help her concentrate, and as a result, significantly reduces her anxiety. It's also been tremendous for her self esteem. She no longer feels ditzy and forgetful.

Do you have specific concerns about the medication?

[hillview]

humm well from your post I am unclear why you would put her on it. Is her learning a problem right now? Are her teachers out of options?

My context is I know NOTHING about this specific med but meds are a later resort (not a last resort per se but a later resort if that makes sense). DS2 is medicated. His behavior caused major issues at school and at home. I wish he was not on meds but he really needs to be. Even on meds his behavior is very difficult at home at times but very good at school. He is no longer the problem kid, being sent home, hitting teachers. SOOOOO I am not against meds it is more from what you say (that teachers might not really notice) etc that I am wondering aside from dev pedi why would meds benefit her?

[JustMe]

Thanks for the replies!

Why meds now? Well, b/c she doesn't "bother" the teachers, but that pretty much works against her b/c she also doesn't necessarily learn very much either. Also, she verbalizes that it is very hard/frustrating for her as she sits in class and doesn't know what the teacher is talking about a lot of the time.She has a part in it too, as she works to cover up when she does not understand, etc. (We are working on self-advocacy through a clinic she attends at a local university, but I expect it to be a continuing issue). Are her teachers out of options? They really don't worry about her much and she flies under the radar in a big way. They seem to want to pass her along (for example, one of her teachers allowed her to do take home tests and basically copy the answers our of her notebook--um, she can copy without knowing what she is even writing). They are busy worrying about the kids who do bother them/have behavior issues. There are all kinds of ways to get passing grades (grp work, presentation, homework which they ask parents to help with, etc) , so it is not like she is failing...just not really learning much and being very frustrated about that. The dev ped. says it will help with processing in her case and, as I said, some research seems to support that. We have tried everything else there is to try other than moving somewhere where there is a specialized school.

My concerns are--that she will have some serious side effect that may not be immediate, as I will be watching carefully during then. That it may change her personality ( I have no idea how much it does this or not). To a lesser extent, I am concerned about how it will effect sleep (she has always been a good sleeper and that has been a life saver for me. Although she does not have typical behavior problems, she is very dependent on me and likes a lot of my attention), and just that yeah maybe I should just let her be. She is adopted internationally, so maybe all her ancestors were artisans who sold their crafts and that's what she really should be doing and I have no business medicating her so she can learn better.

[hillview]

well based on what you said if I understand properly the medicine might really help her LEARN which seems like a good reason to try it. Good luck. It isn't easy I know!

[egoldber]

My concerns are--that she will have some serious side effect that may not be immediate, as I will be watching carefully during then. That it may change her personality ( I have no idea how much it does this or not). To a lesser extent, I am concerned about how it will effect sleep (she has always been a good sleeper and that has been a life saver for me. Although she does not have typical behavior problems, she is very dependent on me and likes a lot of my attention), and just that yeah maybe I should just let her be.

I get that there's a lot of angst around these meds for a lot of people. But they really are very short acting.

To address side effects, the most common are nausea, insomnia, and suppressed appetite. The first two tend to be short lived.

Both of my girls had nausea for 1-2 days when they started the med. Younger DD occasionally will get nausea if she takes her med and doesn't eat. So we try to always give it to her just before she eats.

My older DD had no insomnia when she started the meds. Younger DD did for the first week, but then she adjusted. This was only with the long acting versions of the med. If you're only looking at the short acting version, then there likely won't be any insomnia.

As for appetite suppression, younger DD (petite anyway at 8 years old and 46 pounds) definitely has this. The doctor watches her very closely. My older DD has a slightly depressed appetite, but not as much as my younger DD.

One thing that can happen is an afternoon "crash" when the meds wear off. Many kids get cranky and angry when the meds wear off. This again tends to happen mostly with the long acting versions.

If the doctor thinks it can help, I think it is worth giving it a try. The good thing about your DD being older is that she can communicate with you about how she feels. If it makes her feel off or yucky, then she can tell you that.

[pastrygirl]

My 8yo has been on this med since Thanksgiving week. No nausea or sleep problems. I was worried about sleep because he already gets the minimum amount necessary -- he's always been that way. He doesn't make up for sleep if he stays up too late, for example. This med so far has had no impact on sleep.

He does not eat his morning snack at school anymore and I suspect he hardly eats his lunch. On weekends for lunch, he eats maybe 1/4-1/3 the amount he used to, so there's a definitely decrease. I'm trying to get him to eat at different points of the day, letting him snack as much and as often as he wants. There are days when he gets home from school and wants to eat straight through until dinner, and there are other days he won't even finish a z-bar after school and then nibbles on dinner. I'm a little worried about that, but we have our first followup with the pediatrician on Tuesday.

As far as personality, he seems the same. Apparently at school he is getting right to work and completing it without distraction -- something he has NEVER EVER done before. Surprisingly, the meds have lasted into the evening, because he'll sit and do his homework in minutes without wandering around or getting into other things. This is huge for us. At home on weekends, I'm noticing less of a difference on the meds because we aren't doing schoolwork. Maybe he's a little calmer in general, but he seems like the same kid as before to me.

I've been told that this won't really help with executive functioning, but I don't know. I would think that if it helps him have a clearer, more focused view on schoolwork, that he'll naturally be able to process what needs doing and when.

[JustMe]

Thanks, everyone. I feel like I can go forward with the trial now. I was just stuck.

It is helpful to hear there can be nausea for the first few days and then it may stop...so I can assure dd about that if it happens. Also, good to know that insomnia may happen but may also go away after a week--I dont want to stop too soon.

The plan is for her to have the long lasting version dose before school and then a short acting booster for homework at home (at least I think that's the plan--its what the dev. ped. suggested when we talked about it, but the prescription he mailed says "1 tablet once daily. After school". I'm guessing that is a typo or something so I have an e-mail into him.

The appetite suppression thing is going to be interesting. Dd has a huge appetite and was on the small side until recently. Now she is at an ideal body weight, but still eats a ton..so it will be interesting to see what happens.

thanks again!

[pastrygirl]

The appetite suppression thing is going to be interesting. Dd has a huge appetite and was on the small side until recently. Now she is at an ideal body weight, but still eats a ton..so it will be interesting to see what happens.Yeah, it's been a HUGE change here. My son is usually a bottomless pit! I really try to have him make up for it at breakfast (before meds) and dinner. I'm also going to see if liquid snacks, like yogurt smoothies, will help.

[egoldber]

but the prescription he mailed says "1 tablet once daily. After school".

He's trying to give flexibility. For example, my younger DD's short acting booster scrip says "Give once daily, between 3 and 4 PM". Which basically means, after school. But the downside is that if she is in an after school program and they have to give her meds, they won't give it to her at any time other than what it says on the label. So if her bus happens to be late and she gets there at 4:05 instead of 3:40, they won't give her the medication.

[JustMe]

He's trying to give flexibility.

We had discussed one tablet (extended release) in the morning and one (short acting) afterschool. All it says is one tablet daily. after school---so still does not make sense to me, unless he forgot to put in one tablet in the morning. Wow, good to know how things can be effected if the instructions are too specific!

[egoldber]

So you should have 2 scrips, one for the long acting and one for the short acting. If the long acting one says after school, that would be wrong, don't do that LOL!

[JustMe]

LOL! So glad you posted this. I hadn't seen the second scrip! Its all correct and makes sense. I feel stupid now!

A couple of more questions--
If your child had temporary insomnia, how did you/they deal with it? Were they then tired during the day?
Does anyone have a child who has insomnia that lasted more than the first week or two?

[egoldber]

No, no, it's all very confusing!!! Sometimes I feel like I have to be a pharmacist to understand all this stuff!

Here's a handy chart with many (but not all) meds: http://addwarehouse.com/shopsite_sc/store/html/article3.htm

[niccig]

Dd does NOT have ADHD--not even the inattentive type. This is according both according to me and according to evals. She does a diagnosis that involves processing issues and executive functioning issues. An example would be that she has difficultly learning new abstract material. However, for anything not in that category, her attention is fine. Anyway, none of that is being questioned. Her dev pediatrician has recommended a trial of methylphenidate. He thinks it will help her learning. I can find research out there to support this. I have tried neurofeedback and other methods with none to very limited success/difference.


I think for some processing issues, it can be difficult to see on evals or questionnaires, they're just too subtle to show up. As Beth said, she is old enough to say how she's feeling about things - has she filled out a questionnaire herself or talked about she feels? It sounds like she's willing to try and she can report back if she thinks it's helping or if the side-effects aren't worth it. I would take into consideration how she feels.

I just spent 3 months in a middle school and I did plenty of observation in the classrooms. *I* had trouble concentrating - there is just so much going on. While no one is noticing issues with her in that setting, doesn't mean she isn't struggling. You could see this as a trial, give it a few months, then reassess with her.

[JustMe]

I think for some processing issues, it can be difficult to see on evals or questionnaires, they're just too subtle to show up. As Beth said, she is old enough to say how she's feeling about things - has she filled out a questionnaire herself or talked about she feels? It sounds like she's willing to try and she can report back if she thinks it's helping or if the side-effects aren't worth it. I would take into consideration how she feels.

.

Definitely agree that her processing issues are not reflected on the questionnaires. Except for the BRIEF, I generally feel like I am filling out the wrong questionnaire for dd. The dev. ped. knows this to some extent. So, she did fill out a questionnaire, but again the questions were not really aimed at someone with her struggles. However, I agree that she is now old enough to be aware of how she feels and positive and negative differences. That is a huge reason why I am willing to try meds now, as I would not count on her teachers to be able to identify the kinds of changes she may experience.

Thanks!

Also thanks again to everyone who replied and thanks especially for writing about the side effects that can last a short time--I think there is some chance I might have given up too soon if I didn't know that. Plan is to start this coming Monday.

[egoldber]

Wondering how things are going?

[JustMe]

Oh Beth, thank you so much for checking in! You are so sweet.

The good news is that we have had absolutely no side effects. Even her normally very large appetite remains intact. We have only done the extended release/morning dose and have not done the afternoon shorter term dose as, until possibly today, we did not see any positive effects and we were generally out during the day and forgot to bring it with us.

So, before today, I saw no difference. She has no homework, but I have been having her read (her not being able to accurately report what she reads when she reads more than one chapter is one concern). However, today she read for 2 hours straight, which has never happened before! It has been 1.5 weeks, so I don't think the med should take that long to kick in? I have not asked her about what she read (to see if she actually understood it), but she has never been motivated to read that long due to the lack of understanding. So, I don't know if it was a fluke, she just felt like laying on the couch (my sister is here and was reading), or there was a real difference. I will see if there is any difference when she returns to school on Monday.

If it doesn't seem to make any difference, I will have to decide if she should do a trial of dextroamphetamine. This is more effective with more people who have dd's diagnosis, but has more issues with side effects (the last of this according to the dev ped).

I am worried that I won't be able to tell if there are positive effects as they will be subtle in the short term (and only apparent in the long term). OTOH, I am sure there was nothing different until today, but being at school will give me more info when she has more work to do, etc.