My DD18 is home from college and she informed me that she quit taking her meds a month ago because they stopped working. In short, my question is: is this normal? Do some ADHD meds just stop being effective or does this indicate that maybe ADHD wasn't the underlying issue after all?

As background, I sought an eval last year due to her serious difficulties producing written work in a timely fashion. DD was diagnosed with ADHD inattentive and PDD-NOS last spring and she went on a trial of Methylphenidate over the summer - eventually settling on 30mg XR in the am and 20mg XR in the pm - the max dose according to her doc. DD said it seemed to be working (the other dosages worked for a couple days then stopped, but at this dose she felt it was still working after a couple weeks). This was the first and only med she tried, and it had no negative side effects so we were ecstatic thinking we got the right one without the merry-go-round ordeal. Long story short she survived her first semester but produced only about 1 page of written work for every 5 assigned for a whopping total of 4.5 pages for the semester, 3 of which were written without the meds according to her.

I am tempted to just be thrilled that she is able to squeak by without meds but it really was an 11th hour decision by the school to let her return for the spring given she turned the overdue and overly brief papers in on last day. I am wondering if there is any point in asking her Dr to try a different ADHD med or if we should just let it be and hope she can cut it med-free. (Or maybe just get some anxiety meds for me???)

Help!

I have read that there is no real hard data that ADHD drugs actually improve your GPA or things like that long-term. I've read that the meds make it easier to focus on boring repetitive tasks but make it harder to do original, creative thought.
I have also read that for most kids/adults, you may have to keep taking higher and higher doses for it to keep working. There can be alot of side effects too- it can shrink your amygdala, an important part of the brain. It can affect your growth rate and make children shorter than they should be. It can cause weight gain and provoke diabetes. It can provoke manic depression in susceptible kids.
It can give you bigger problems than you started with. We don't use any meds but as a doctor, I've read about it.

Hi Nik,

That your DD is still not functioning successfully (squeaking by rather than producing adequate work) indicates that *something* should be addressed. I'd seek further help. But I think you should be aware that the PDD-NOS may affect schoolwork as much as the ADHD does-- it brings its own issues (such as perfectionism, anxiety, not caring what others think-- a slew of issues that can affect school performance). ADHD meds may not be enough to help her overcome her disabilities.

Is she in touch with the college's disabilities office, and is she getting any accommodations?

Are you willing to keep paying for college in this mode, or would you rather have her take a leave of absence, let her spend some time doing therapies and adjusting meds to reduce the severity of her symptoms, and then try again? I know she probably won't like this solution, but I think it's worth considering.

You were joking, but treating your anxiety may become necessary too-- it sounds pretty harrowing.

DeeDee

Jack'smom, I had a lot of anxiety about her starting the meds but this is the first time I have heard any of these particular issues related to ADHD meds - and I thought I did a lot of research! Could you point me in the right direction to find your sources? I am not at all concerned about GPA, she is extremely bright and she is doing very well in all other areas at this very rigorous school (which is why I think they are letting her stay). It is just the writing...

DeeDee, yes, I am willing to continue to keep paying, a voluntary leave of absence is not an option. She has totally blossomed since going there, she is really happy for the first time in years, she has real friends now (she explained "I really like them, they are not just the people I despise the least!!!") and she is overcoming a lot of anxiety by facing things that she would otherwise have avoided with her group of friends (positive peer pressure?).

Since writing is the only serious roadblock and the ADHD meds were the only thing I had to go on as a possible solution, I am a bit lost for how to help at this point.

I dont want to keep upping the dose or have her addicted to something terrible but I just wondered if anyone had experience with one type of ADHD meds not working but another one working fine?

DeeDee brings up important points - there are aspects within her profile that may interfere with writing beyond the ADHD - and these issues should be addressed too. Could it be that the meds actually did help with concentration, but that the other underlying issues that were not addressed are causing the havoc? I agree that if she is not getting the support she needs in terms of accommodations and or perhaps private tutoring, perhaps this is one step she can take to help.

Regarding the meds - if they are truly not working, I would seek medical help to either change the med or adjust the dosage. Generally one can stay on the same dosage for quite awhile, but it is possible that one can develop a tolerance and require higher doses. This usually happens over a number of years - not months or weeks. If your current doctor is not an expert in ADHD - either a psychiatrist or neurologist with a specialty in the area, you may want to consider seeking a second opinion. Many general practitioners may not have the experience to help with more complex cases - especially doctors that treat adults - they probably don't deal with ADHD much at all.

You might also want to check out millermom proboards - it is a forum that specifically addresses ADHD and LD. If you post in the ADHD section, you most likely will hear from very knowledgeable people that can give you further direction. http://millermom.proboards.com/index.cgi?board=general

Nik - my first thought is "Has her body changed significantly since starting school?"

I know mine did first semester!

If she changes her excercise routine, gains or losses body weight, or her hormones change one can expect to 'hop back on the medication merry-go-roung.'

Will she accept a writing/organizational skills tutor? Nowadays coaching can be done over the Internet or in person. Was she at all impressed that the school almost didn't let her return?

I love the book 'Transforming the Difficult Child Workbook' by Lisa Bravo to help parent these tough to motivate kids. Just this week as DS was returning to school and his airplain reservation was dissapointing, he started up (in public) his 'Mom You Don't Even Care what I Go Through" Whining, and without even thinking about it a turned my body away very slightly and broke eye contact (as is suggested) and he twitched, took a breath, and said: 'Opps, sorry' and then went back to his normal mature behavior. What was so amazing is that I didn't even have any mental thoughts about my behavior of turning away - I just no longer tolerate being disrespected by him and it was natural to shift my body without any thought in the matter. It was only after he responded that I even knew what I had done. That's after about 6 months without 'practice.'


I don't share their view on ADHD medications. I'm sure that in 20 years all the current medications will look 'barbaric' but for now they are making a very strong and positive difference at our family.

Love and More Love,
Grinity

Based on what I have seen, the concentration issues were resolved entirely by the better educational fit. There is definitely something to do with writing that wasn't addressed with the ADD meds, but I am at a loss for how to address it - she thinks now that it may be just psychological?

She said all of her early attempts at writing were judged harshly due to her awful penmanship so she just stopped trying and never really learned how to develop an essay. By the time she had keyboarding available, her anxiety over not really knowing how to produce what was expected had her making excuses rather than trying and by then she had figured out she could pass classes without writing the longer papers anyway. Sounds sort of plausible to me.


She started getting a lot more exercise and eating much healthier, she lost 12 pounds...Hmmm, maybe she fixed the root causes of the specific issues that were actually being helped by the the meds so they became moot and thus seemed to stop working????


No and, no! She seemed very calm about it, said she believed she would be fine...I think that may be due to the Aspie in her. (I am the one getting panic-inducing correspondence from the school). Her roommate didn't fair so well so hopefully DD realizes now that they clearly mean business there.


Love it! Good for you! I am not sure if my DD would pick up on those subtle gestures though...I may have to
bring that book back out for the summer.


I think its a very individual quality of life thing, I was so against meds at first but I heard lots of very compelling testimony from people who swore it had made their lives much better.

RE Accommodations: The College is structured in the most accommodating way that I can imagine - very small discussion based classes, writing labs and tutors are available at no charge (but she has to ask for the help, and there is still the anxiety). I really wouldn't know what else to ask for. I am hopeful that she might have less anxiety about asking for and accepting help now that she has gotten to know her tutors (teachers) and fellow students over the last semester (they will all be the same for next semester). They showed her mercy in accepting her short papers and she had one teacher email to compliment the quality of writing in what she did turn in, so she seems to be gaining some confidence -YAY.

Although the writing issues remain a mystery, I think I have resolved my question about the ADHD meds. Thanks for helping me think this through!

Nik, lots of people on the autism spectrum have multiple strikes against them where writing is concerned; usually these are not "just" psychological blocks. Often there is co-occurring dysgraphia (disorder of written expression). Even when that's not the case, there is often a motor deficit that makes writing a challenge. Then there are the executive function (organizational) difficulties-- getting one's thoughts in order and getting them onto paper is a sophisticated activity with lots of steps. Then there is the not caring much what people think, and anxiety about grades, which makes a student who does the work sometimes fail to turn it in at all.

Does any of that sound familiar?

The motor stuff can be addressed through hand strengthening and occupational therapy-type exercises. The organizational stuff could be improved with a writing tutor, if the tutor understands the deficits. (But warning: you don't want someone to fix all her papers, you want someone to teach her to write. There's a big difference.)

Now that she's an adult, she gets to say what would be useful; but to me it sounds as though she has developed certain habits of thinking such that she will excuse her problems rather than choosing to work on them. A sensible coping mechanism for a teen, but perhaps not that good for her education. The more you can get her to actually work on these things and improve, the better.

Best,
DeeDee

Get the book out now. If those letters seem panic inducing then you have plenty to practice on. Stress anxiety and flexibility seem to be themes that could become key life lossons. I can promise that her life will be full of ups and downs. If you panic over the downs you won't be able to savor her or provide the calm positive reference she needs.

I had faith that she will face her challenges and grow.

Grinity

Read this very interesting book called Anatomy of an epidemic by Robert Whitaker. It's about mental illness in the USA and our love affair with medications. Read the chapter on ADHD- it's really eye-opening.

If she is too anxious to ask for outside help, perhaps working through some of the materials at the Purdue Online Writing Lab might help her out. They've been useful for my son, who has Asperger's and a Disorder of Written Expression.

In our experience, if the med shows initial trackable, graphable effectiveness, it rarely loses that clout in less than six months...more often a couple years. Weight gain does play a role but rarely weight loss. We use Excel to track responses to med changes after several bad doctor experiences. What we have noticed...
-Meds don't change sensory issues. DS's writing issue appears to be a sensory motor planning issue (which can manifest in anxiety masked as perfectionism). We hope OT will automate some of his lacking skills. For writing, meds without therapy proved ineffective even while the meds were highly effective in almost every other life-quality category, including mood and social.
-Meds can be completely ineffective if the child is getting too little sleep.
-We sometimes use on-and-off-meds timed math facts tests to identify whether a med is working properly for the boys...get a baseline to track production.

QUestion...how long did your psych take to titrate up to the 20/30mg dose? Did he give you worksheets to track titration over several weeks? Track side effects? On that dose weight loss is not surprising--and insomnia might also result depending on when she takes the second round. Around here sleep loss is the #1 reason for med inefficacy and lack of productivity. On the higher doses, we've also learned that meds don't fully leave the system until well past their purported "window"...if at all, depending on the frequency of dosage. Might be interesting to find out when your DD did written work in relation to med intake if she says she wrote while off of meds.

I didn't read all the replies (just got back to Texas last night from 2 weeks in Thailand!) but to answer your question about ADHD meds that quit working after a while - yes. It is quite common. Especially during the transition through the teen years and into adulthood. It doesn't mean she doesn't have ADHD, or that she's outgrown it. She might be better able to cope with it, however. She's old enough to understand how her ADHD effects her and I'd encourage her to continue to see a psychologist if not a psychiatrist, still, on a regular basis.

Okay, I am revisiting this issue given recent events. I thank you all for your responses and I apologize for the gap, I have been overwhelmed with the events of the last few months.


I believe we started at 10mg am and 10mg at noon, after a week that was no longer effective, we went to 20mg/20mg and after a couple weeks that was not effective, then we went to 30mg/20mg and that worked very nicely for a few months. We were not given any suggestions or advice about tracking effectiveness. The insomnia was pre-existing and didn’t get worse with the meds (it may even have improved slightly) DD wrote the essays about 2 months after quitting the meds but she wrote them on the last day of the semester under the threat of expulsion and I think the adrenaline may have helped. Unfortunately she decided that was effective but that method failed to work for her in the next semester. So here we are.

My DD has never been to a Psych, she was always against it but is now willing to go.

I want to set up counseling, CBT and med trials with professionals who know what to look for and how to monitor effectiveness. What kind of professional am I looking for? Psychiatrist? Psychologist? Therapist? Counselor? Do I need to put together a team myself?

I finally found a counselor with an opening on my insurance plan who specializes in ADD and Anxiety, she does CBT, biofeedback and neurofeedback but she can't prescribe meds.

Our doctor (a DO general practitioner) had no trouble prescribing meds last summer but she doesn't seem to have a lot of expertise in ADD. I had to request an EEG as they weren't planning on doing one when they first prescribed the meds. We had no follow up from her at all. When we called in that the rx seemed to lose effectiveness, we were given new prescriptions with higher doses until we ran out of time and were at the highest dose for methylphenidate according to the nurse who seemed to be misreading out of a book.

Should we just go with the CBT counselor and ask our general DO to start trying different meds? Am I looking for the wrong kind of professional to start with?

sorry for my neediness, my brain is full

Nik, I persist in thinking that your DD's issues stem as much from her autism as from her ADD.

If you can find one, a team will be best. My DS's autism case supervisor (psych) manages behavioral therapy, but works closely with another doc who can prescribe meds (in your DD's case this is likely to be a psychiatrist). IMO you are more likely to find an autism doc who can also treat ADD and anxiety than an ADD/anxiety doc who's equipped for autism.

The counselor you found might work well for behavior change (the behaviorist principles of CBT are similar regardless of the diagnosis, they treat symptoms on a case-by-case basis)-- but my bet is that your DD will do best with someone to manage meds with her, and that you will need to add someone like that to your team.

I would not let a general practitioner prescribe meds that alter the brain. My strong preference is for a specialist who's seen lots and lots of kids and young adults with autism, anxiety, and ADHD.

DeeDee

Yes, I agree, I would add someone who has also specifically seen lots of gifted females with ASD...but WHERE do I find this specialist? What do I search for? I have spent hours and the 2 people I found that might come close have 7 month waiting lists!!!

Put yourself on both lists and also keep looking.

That's my approach to life.

I don't know if this is helpful but I had a thought that maybe you could do phone consultations with an aspbergers specialist who then wouldn't have to be local.  I googled "aspbergers specialist" to see if they had a list like hoagies keeps for gifted specialists.  The first link was for a thread on college confidential which was here:
http://talk.collegeconfidential.com...rgers-specialist-but-none-my-region.html


So... The essays she got done were the recent ones or the ones in January?

yeah, we're on a couple lists.

I had our doctors office call the one that I thought looked best to see if they could get her bumped up on the list due to the fact she was depressed and had urgent need. The great sounding doctors office called back and told me they would not be able to see my DD, not now, not ever, they were taking her off the list! No explanation why. I'm not sure if it was something my doctor told them or if it was just a psycopath working in the office. Why would they say that?

Thanks for the link La Texican, there’s a lot of links in that thread, right now I am overwhelmed but I’ll look through them once I recharge.

The only essays she produced were the ones in December 

There are some physician finders from this home page: http://www.aspergersyndrome.org/Home.aspx

Our best help has always come from the autism centers of research hospitals, specifically children's hospitals (I know she's not a child any more, but you can still call them for referrals).

DeeDee

p.s. If you are googling you will get more hits with the correct spelling: Asperger's Syndrome. No offense meant, just a correction.

You probably sounded like you would be more hassle than you were worth.

If they are high demand, there's no reason for them to deal with non-passive clients.

I don't know. A friend had a similar event happen to him with his pain doctor, and it turns out the office thought he was shopping for drugs with different doctors. Just FYI.

Most ADHD meds are considered controlled substances, and there is a large effort on to fight misuse. This seems a likely scenario.

DeeDee

Doctors are really getting pounded by the feds (or somebody) for the pain meds, so they are either cleaning things up or getting out of the pain med business.

One of the docs who lives down the street from my MIL just got nailed. I'm pretty sure he's in jail now.

heh, the sad thing is we are looking for someone who will do more than write a scrip for drugs, our regular doctor has no problem in that area... We want someone who will treat the whole problem not lap a band-aid on part of it.

We finally have an appointment for early June (YAY!) with a therapist who does CBT, Biofeedback, Neurofeedback and specializes in anxiety and ADD. No mention of Aspergers experience though, none of the docs on our plan seem to have ASD specialties. I really think working on the anxiety will have the biggest impact/benefit so I am very hopeful.

I can't really speak to the doctor issues here, but as a college professor I wanted to comment on the accommodations issue. Most universities have a Disability Resource Center (might be called something different). These units work with the students and write up an accommodations letter based on their diagnoses that the student can present to their professors at the beginning of the semester. The letter does NOT reveal the diagnoses, it only specifies the accommodations. The professors are required to provide these accommodations, therefore you do not have to worry from semester to semester whether her professors will be kind and show mercy. In addition, it means that she does not have to discuss the situation with each teacher. She just gives them the letter and they provide the specified accommodations. She does not have to explain why and the instructors are not allowed to ask. For example this past semester I had a student with an accommodations letter that allowed for missed classes and extra time for exams and papers. He only came to class a handful of times (he was actually quite ill) but I could not take that into account when grading (of course, I would not have anyways, but the point is that even if the instructor wanted to they couldn't).

I highly recommend that your daughter seek assistance from the unit at her university. They may not all run the same way, but most if not all American Universities have something along these lines (it may be required by the ADA, I'm not sure). Anyways, the ADHD alone would qualify her for some accommodations plus it definitely sounds like something else is going on with the writing. She might be able to get more time for assignments or be allowed to turn in shorter assignments. I think that having these accommodations set up may reduce her anxiety because she knows that they are guaranteed and that she doesn't have to spill her life story to every professor she takes a class from.

Thanks for explaining this, I will keep it in mind if she decides to try a different college. Because this particular college is so small, the ADA issues are handled by the Assistant Dean, I don't know if they get special training in ADA issues or just wing it, I suspect the latter. I had contacted this person last summer and I sent my DDs whole Eval and a copy of the thread about what happened last year when my DD derailed at the local university. I explained that the diagnosis was new and I didn't know what accommodations to ask for. I was told that the college really didn't have the issues most people request accommodations to alleviate (no timed tests etc). I was also told that some students do weekly checks with the counselor to make sure they are staying on track and I was giving a contact who for a fee would do telephone checks with my DD. My DD has way too much anxiety to talk to a stranger on the phone about her schoolwork. The weekly counselor checks might have worked if we could have spent some time getting a comfort level with the counselor and setting up the expectations ahead of time but their office was closed when we got to the school and since the add meds were working well at that time we thought it would all be okay. So we just went ahead and took a chance. If DD goes back to this college I will see if we can get an accommodation paper that allows her to write shorter papers and maybe supplement them with one-on one oral dissertations which is where she really shines.

UPDATE: DD has been selected to participate in a national research study on social anxiety, she will receive top notch Cognitive Behavioral Therapy for the next couple of months free - Woo Hoo!!!

That's awesome. I hope it's effective for her.

DeeDee

Wow! That's great news! Good for her/you for getting her into it.