No meds work-anyone have that experience? | ADHD Information

Hi, we've posted in this forum and we're wondering whether other people had the experience of finding that the most effective ADHD drugs could not be used for their child due to bad negative side effects?  If so, what did you do?

Our 8 y.o. son has been on the stimulants and Strattera.  The meds helped with attention but the side effects were bad and we had to stop.  The doctor is now suggesting Wellbutrin, but again, this isn't a first-tier drug for ADHD, and we have no idea if this will help.

School has been a big problem (both on and off meds), and we are concerned that social relations might also suffer.  That's why we've been willing to try other, less- effective drugs, such as Wellbutrin.  However, we're also at the point of quitting the the drugs and working on pushing the school for more formalized accommodations
(we've been working on the school angle for approx. 1 year with not much progress, but now it may be time to bring in the big guns, so to speak).  ANY THOUGHTS?

We are, and have been for years, in the same boat. A couple fo years ago I knew stims were just not going to be tolerated by my daughter. We've used others off label, all successfully for several months, but usually they just dont quite cut it. I pushed and pushed HARD with school and that has helped a LOT, but she really doesnt function well outside school. Strattera has been good for her, really no side effects, but it's really just not cutting it lately. Home we are constantly reminding her of everything, she's constantly forgetting and gettting frustrated with us reminding her. We've had to implement a behavior chart at school again, and she is in 7th grade!

That said, she did take Wellbutrin, but not alone with a stimulant and it made her dizzy, but others do take it successfully. Another med we saw positives with were Desipramine and Nortryptiline, but they do casue weight gain (for us it was needed).

My advice is to do both, get the most accomodations you can but keep trying on the meds. I am thinking of calling the doctor again this week myself, but am not really sure we have too many options left.................

Thank you, Diane. I hope that your doctor is creative and can come up with new options to help your daughter. I know how you must feel.

yup, unfortunately there are plenty of kids out there that are unfortunate enough to have ADHD and then even more unfortunate to not be able to toelrate the meds for it .

Good luck to you too. BTW, she did not have really bad side effects with Daytrana. Granny Fran is right about the delivery method making a difference. For some reason the patch was smoother. But she did not eat at all and did have some tics, and she HATED wearing a patch. She's a teen and I am trying to let her have SOME say in all this.

Yes, there are people who cannot tolerate the adhd meds.  Don't give up.  Sometimes it is the delivery system of the med that is the problem and not the med.  Keep trying.  If you have to go to an alternative med, it is better than nothing.  Accomodations help, but they help best when with the meds. I wish you the best.

I am always so glad to hear med success stories of others! 

My DS has been unable to tolerate two prior meds, had little success with another, then was recently switched to Vyvanse.  We shall see what the outcome of that is. 

I feel your pain my daughter was formally diagnosed with ADHD at 12 years old and has been on 4 different meds since none worked until the 4th one- Adderall XR 30mg. I am so thankful for the forum it has been alifesaver for my family because I was not educated enough about ADHD meds before coming to this board to realize that ADHD meds can be trial and error. She started off using Focalin XR 5mg,(no luck and headaches), then was switched to another med(not sure which one  for 3 mths with no changes), then ped switched her to Concerta 18 mg(headaches, no personality, tired in evenings, no visible improvements), then bumped up to 36mg (no progress), then finally 54 mg of concerta(still no progress). Finally in mid  2007 I decided to give up on meds and just try techniques to help her to organize her school workload and remained frustrated with her forgetting to turn in work and getting 0's in classes for NHI assignments. I then decided to give meds another try after reading all the success stories here on the board, so asked her ped to switch her to Adderall and she has been taking those for 1 1/2 month now with no real side effects other than appetite loss(but she makes up for that in the evening when the med starts to wear off). she is now turning all her assignments, can focus in class and her test grades have improved tremendously- I only wish she had been on Adderal since the beggining of the school year because she has had to work hard the past 6 weeks to get all her grades up to passing, plus she still has to go to summer school for the 1st time in her life because she failed 1st semester Algebra that she took back in the fall when she did not have meds. Keep trying don't give up on the meds as yet the payoff is so worth it. Yes we have not had much success with meds. My daughter turned 7 today and we have been trying all school year to get it right. We started out with Concerta and it wiped her out. She was withdrawn and became depressed not to mention horrible rebound. Then we moved on to Vyvansse. It was a little better as far as her socializing a little more, but once again  horrible rebound and then the depression kicked in. At this point I start to give up and take her off meds for a couple of weeks and it was'nt long and we are at it again, because I realize she really can not function well without something ( she had a hard time staying in her seat at school and focusing on her work) Then we were prescribed Tennex .5 tab in the morn. and .5 tab at night. I was very surprised it really helped slow her down a little. We stuck with that for a month and then incorporated Focalin XR along with the Tennex initially things were good ( the first couple of months) She did have some rebounding, but nothing like before. As time passed the rebounding did get worse, I continued on with the med and just tolerated it, because at least she was not depressed or withdrawn. She only had the rebounding, but recently it has become too much to handle. We have been playing soccer and her games were in the afternoon about the same time the rebounding would start. There were several times she would just lay on the ground and have a tantrum because of the least little thing. Not to mention sreaming and yelling at me or her father. A couple of the families kind of knew what was going on, but there were others that did not and it was so embarrasing. It embarrased her father and I, but more importantly I know it embarrassed my daughter once she came to her senses. So therefor, we have since stopped the Focalin XR and have an appt. in a couple of weeks. She is still taking the Tennex, but is a little out of control she very loud,  and does not listen to anything you tell her or ask her. Also, she is not sleeping well not sure what could be causing that. She struggles going to bed . Then wakes up in the middle of the night and can not go back to sleep. Through all of this she is happy!! My husband and I are going crazy, but I love to see her goofy personality peeking through again. If she would just listen!!! I will post again once we see the Dr. I hope we can get it figured out this summer. Sorry my post is soo long, but I rarely post I always read and it feels awesome to speak to people who truely understand. Thank you for listening !!!Thank you to littlepeanuts and everyone else for sharing. It means so much.

An update on our son: since we posted, our son had been taking Wellbutrin. The Wellbutrin seemed to help somewhat with our son's concentration and hyperactivity; however, it also increased his reactivity, resulting in frequent angry episodes (most always in the morning, before work, of course). The psychiatrist feels that we should stop the Wellbutrin, and we're inclined to agree, especially given that there is only 1 month left of school. That leaves us the summer to try Tenex or something else that might settle him down (or not, as the case may be).

Our school situation is not good. The teacher complains no matter what -- whether our son is on meds or off meds. There's no question that our son is significantly more unmanageable off meds.

We have a school meeting coming up, but we have no 504 or IEP as of yet. Although we intend to push for at least a 504 Plan, we know that we are at the mercy of the school.   How frightening is that?!

My son, who is barely 6, was dx in September. We have tried every form of Metylphenidate I believe! And Adderal as well. They all work the same, but Rebound is hell for him, and us, his family. Whenever we try somthing new, it is good, but then rebound slowly creeps up. Our psychiatrist attributes this as "yeah, oh , he's so little."  

We tried the Daytrana patch about a month ago, and so far, he has the least amount of rebound with it. I agree, it's probably the delivery system.

Some days the rebound is sooo bad, I question giving him the meds. But, then he has a bad day and I realize it's just not an option.

Henny,

    push for those accomodations. Decreasing stress can SO help. If school's not so hard and so negative. It'll be easier all around.

Cali

   We found Daytrana to have few side effects (excpet appetite) also. I agree the delivery system makes a HUGE difference.

KEEP trying. We've tried just about everything. Right now we are using Strattera at the appropriate dose with and we recently added 10mg of Methylin ER.

hFor today..............BEST we've ever had. Of course I just jinxed it and now we'll ave to start over .

Diane, we intend to push at school, but we're not optimistic. The teachers have been uniformly awful, and the principal is the worst.

We will keep trying, though we are exhausted and sometimes overwhelmed by all of the issues that result.I know. Been there. I had to hire an advocate. She is expensive, but we really needed the support and it has been worth it.......................Yes, I've heard that advocates are a useful and less expensive option than lawyers. Perhaps we should explore that. Although we have an upcoming consult appointment scheduled with a lawyer, the cost of the lawyer's services is almost prohibitive. Nevertheless, it appears that we need assistance from someone schooled in special education law. It's very specialized and I can definitely see the benefit of being assisted by someone who knows the players and how the particular school system operates.

Thanks Diane.

everything shifted for us the very first day we walked in I had the advocate on my side. It was amazing how that "sat up and paid attention" after that. I've got them, hopefully, paying for transportation and tuition at a different high school's very comprehensive SPED program. She knew what evaluations to ask for, what services, how to document and she has just guided me every step. I couldnt know all that stuff, there are so many nuances and little lwas. She knows the social skills programs and reading programs that work, which evals make school "look good" and which show the true level for the child. One of my better parenting decisions was getting her help. Never mind the huge boulder lifted off my shoulders.

Good luck, keep me posted.