I sent DD into school without her ADHD meds today to see what would happen, plus she had an appt. with a psychologist this afternoon and I wanted him to see what she's like without meds. Unfortunately the secretary called to reschedule the appt. after I sent her to school without meds. But it was still good to know what happened there because it's been ages since I sent her to school unmedicated. I talked to the teacher afterwards and she was nice and laughing about the whole thing but I could tell it was an ordeal.
--DD fluctuated wildly between being cheerful and very smiley and moody or annoyed. She was much more interactive and social with her classmates, but she disturbed them, yelled at them, or bossed them around frequently
--She couldn't keep still and kept compulsively poking her pencil at things (luckily not people)
--She got no work done at all and wasn't even keeping her place in the book with the rest of the class on the correct page during reading.
--during some sort of writing assignment she told the teacher that it was way too hard and she couldn't figure out what to do

When she got home from school she was excessively cheerful and very loud.

Compare this to how she is medicated, where she is very quiet and polite to everyone. She appears focused and hard-working (although she is slow). I think it was quite shocking for everyone, she probably appeared like she was possessed today. I feel bad for her friends. I had her off meds all weekend so I'm assuming this wasn't a withdrawal effect so long after she's been off--this must be the way she really is, but I don't really know for sure.

Is there any other disorder besides ADHD that would cause a dramatic difference in behavior when on stimulants? I'm just wondering about bipolar disorder since she is so up and down with her moods and irritated by everyone when she's not medicated. But would stimulants have an impact on bipolar? I guess I'll have to do some research.

DD told me she wants to go back to school medicated, that she feels much better medicated. The problem is that she is not eating. She is 50th percentile for height and weight so it's not affecting her, but everyone at the school keeps nagging me about how she never eats lunch. She doesn't even buy lunch most of the time, or take her lunch box into the cafeteria. She just sits there and watches everyone else eat. I keep telling people that it's perfectly fine, I've talked to her doctor, it's a medication side effect, etc. but no one seems willing to accept this or let it go.

They often have reason to be concerned when a girl doesn't eat I guess. Depression can make moods fluctuate like that (just the standard type) - not as much as bipolar but definately there.

She sounds like my DD8. She is like a while tornado in her natural state! (Which is where we are at currently, we had to stop the Adderall due to ticks.) Off meds she's not only hyperactive and impulsive, she's more moody - high and low. Crazy manic cackling at stupid/silly thing, falling apart crying crocodile tears over being told no, etc, etc.

I think it's a combination of their age, and the complete lack of control over their impulses when they are unmedicated.

Who is nagging? If it's kids, I'd try to come up with a standard response for your dd to answer back with, something that's designed to stop any further comments or questions. If it's teachers, I'd give dd a response, but also send a request in writing (via email) that the questions *stop* - or that they be directed to you. You can explain in the email that it's a side effect of the meds (I realize you've already explained, but this will repeat it in writing), and you can also (if you want to) put in the email the percentile weight range your dd is in as well s mention that you've discussed this with your dd's dr and have his ok.

If it's the school principal or school nurse, I'd get a letter from the dr stating that it's not a concern, and I'd send that in along with a written letter requesting that the questions stop.

If you think the questions are happening simply because it's lunchtime and your dd is obviously not bringing or buying a lunch, I'd consider asking your dd to bring an empty lunch box with her just so that she doesn't stand out as looking obviously like she's not eating.

polarbear

My DD11 doesn't really eat at school either. She takes her lunch, nibbles on one thing, and then eats the rest at home as an after school snack. She's also very slender (both my kids are). No one has ever said anything to me, and this is the same school that nagged me into an EEG (turned out normal) for DS(then 8) thinking he was having absence seizures, so it's not like the staff is inattentive (lol - no pun intended - ok maybe just a little )

DS9 has a combined type ADHD diagnosis and has never been medicated, so he constantly draws attention from the staff. He is outgrowing his hyperactivity and his "combined" diagnosis and appears to be more inattentive.

DD11, meanwhile, is very quiet and doesn't draw attention to herself, which may be why no one has mentioned her lack of enthusiasm for lunch.

I've stopped nagging her about it (that wasn't working).

IMHO - if your DD is at the 50th percentile, then she is not being too adversely affected.

Here's a thought though... what kind of breakfast does she eat? Hunger could be causing the ADHD behaviours (this is something that I've thought about for my DD which is why I used to be on her case about eating lunch). Although why they won't eat if they're hungry I'll never know.

Sigh (fun, isn't it?). Good luck - I hope you figure something out

Just an opinion - our DS is very moody and has ADHD combined. He takes Quilivant which makes him nicer, but it's a low dose and he still has low tolerance for people and is bossy. However, my husband doesn't have ADHD and is very moody and is very affected by blood sugar even though not hypoglycemic or diabetic. I do believe my husband is highly gifted and he is intense. I think some of this is the gifted mind.

Side note - I have worked in mental health quite a bit, and people with bipolar don't typically cycle multiple times in a day. They do cycle across days and weeks. Typically have a manic period then swing into depression.

Fwiw - my ds 6 is the same, other than he is never super happy off meds. He tends to be more grouchy and touchy. But like his spine!

It's adults in the school that have a problem with her eating. Parents come in and eat with their kids, and then they go to the classroom teacher or the nurse and express concern about DD. Since she was accelerated she appears small for her grade even though she is average for her age. People don't generally know how young she is. People sometimes persuade her to buy a school lunch and then she throws the whole thing out. The school nurse called about this the other day (to tell us that DD threw out her entire lunch). I'm just tired of hearing about it all the time. I appreciate people's concern, but there's nothing I can do. I did talk about this all at length to the teacher, including the percentiles and she suggested I write a note so that every time someone mentions DD not eating, she can show them my note saying it's Ok that she doesn't eat. But what good is that going to do--then people are just going to talk about me being the crazy mom who doesn't care if my DD eats.
She doesn't normally eat breakfast either. Not sure why, because usually Dh sticks her patch on only about 30 min. before she wakes up, so it's not like there is much medication in her system at that point (it takes 8-10 hours for the patch to reach peak levels in the bloodstream).
I'm guessing that when she is not medicated she is very hyper-aware of what is going on around her and what everyone else is doing and if they are not doing the right thing, it drives her nuts. It seems kind of strange how cheerful she gets though (kind of like she is manic).

So what if they think you're the crazy mom? At least they won't be taking it out on your DD.

You might want to have your doctor write a letter to the school nurse saying that you and he are tracking your DD's eating habits, that her growth is fine, and the nurse does not need to get in the middle, just because that may get her off your back more permanently.

DD11 experiences mood lability, as well. We have been told by her pediatrician, psychiatrist and psychologist that this part of ADHD. Emotional regulation is difficult, even more so without meds (if they help the other symptoms, that is).

With regards to her appetite, it really is no one else's business and if her doctor is happy with her weight and interval growth then ignore the comments. DD eats a decent breakfast and then only nibbles a few bites until supper. She then eats non-stop until bedtime.

Thanks. Once I take her into a psychiatrist I'll try to get a note for the school. I didn't like this idea of the teacher's. I mean, who would she show that to? Random parents? It's really no one's business and I told the teacher to please just tell them that we are aware of DD not eating, she is fine in terms of weight, and it's not a concern.

YES - I love this idea. Get backing from your doctor.

It's a pet peeve of mine (OM*G it drives me NUTS) when the school over steps their boundaries and delves into realms other than educating. They need to BACK OFF.

To whomever here was concerned enough about DD to report my post to admin. Please. I told her primary care doc about her not eating and other side effects. We cut her dose in half. So now she is on 20 mg. per day instead of 40. It doesn't help. I was told to just stop the meds if we want to do a trial without. There is nothing special we need to do like gradually taking her off. The primary care physician said that this situation is beyond her realm of expertise and gave me referrals. I am taking her into a psych AND a psychiatrist and we may need to change the med entirely. I am on top of the situation, I just wanted to see if anyone had input about the bizarre behavior, like the mood swings (which I will be mentioning to psychologist and psychiatrist).

polarbear--she has a lunch box that she takes in to school every day. It has non-perishable food like cereal, packaged crackers, and beef sticks. She brings the same food back and forth every day. I'm not sure if she bothers taking her lunch box into the cafeteria, but at least I'm sending it with her. I'll tell her she should at least take her lunch into the cafeteria so that people calm down about it. She also has money in her lunch acct. that she can use whenever. But I told her not to buy a lunch unless she plans to eat it.

blackcat-- really sorry that anyone feels the need to "police" something that is really just between your DD and your family physician. {sigh}

We've SO btdt ourselves-- there are times when my DD is simply NOT comfortable eating-- not even her own food. That's her prerogative, and she had that right even at 5 or 6yo.

Yes, she's thin. We know when it's "concerning" and when it isn't. Frankly, this is what a normal body type looks like, I sometimes want to say to others who are trying to force feed her. (Clearly that kind of rhetoric isn't helpful either, of course.)

I don't know what to say about the meds-- other than that a good many parents I've known report that their kids feel some degree of flattened affect while medicated. That alone seems like it could account for more positive affect and more volatility.

blackcat, I would suggest that you post about this over on the Feeding Doctor's blog, if you feel up to it. I have always found her to have topnotch advice about eating issues, which (in the absence of allergies or other "real" health issues) usually boil down to "trust your child."

Blackcat our DD takes 1-2 weeks to fully settle down when taken off meds. For her the mood swings and impulsive tantrums are about the same when taking medication regularly or well settled off it. They are much worse for a week ++ as she stops taking it. She also eats voraciously the first week or two off and then settles down.

Currently she's off and we are yet again weighing up the pros and cons of medication, or not medicating, all of which are significant... It feels like a lose lose lose scenario to me....

Thanks everyone. MumOfThree, what I'd really like to do is take her off for about 2 weeks so that I can see if there is some sort of rebound effect going on here. But I can't do that if she is completely non-functional in school, yells at all her friends, and the teacher can't handle her. Spring break is coming up so maybe we can try it then.
Maybe the people so concerned about food would back off if they see what she's like without her meds. Sigh. Sweet, quiet little girl unleashed as a loud hellion.

blackcat - Spring break should be good. Those meds should be completely out of her system by the time we wakes up the next morning.

I don't have personal experience to contribute here but had a thought as I read through the thread. MumofThree got part of my thought - that it may take some time to physiologically adjust to going off meds. Another thought is that since clearly the meds make a difference for her, it seems like other supports for managing her mood would be critical if/when she is off meds. I wonder whether she is working with a psychologist (or someone else with experience in this area) on developing strategies?

I had an appt. for an initial consult but he rescheduled it. She is rescheduled for just before spring break, I think, so I'll talk to him about it.