Dr. Sabotages son as he heads to college

[kc4braves]

I'm not sure where to put this post. We decided since my son had lost weight over the year and had not been off of his medicine ( Concerta) since 9th grade, we would try a break from it this summer. He was taking 90mg senior year and we knew he really couldn't go up much so we hoped that he could start back before school started at a bit lower level and that maybe he would grow. We saw the doctor in June, she was in agreement and we made another apt for this week since his job would be over and it was before college starts next week.

Summer was trying. He was completely off the stim most of the summer but he could not handle his job at the pool. He was making himself sick, coming home early, getting so upset and threatening to quit. This is the ssame job he did well with under similar circumstances last summer. We finally convinced him to take a 36 mg Concerta for work and see if his outlook improved. He has always handled life better with his stim. So, with the 36 mgs he worked the last few weeks without threatening to quit but still says he will not work this job next year. Anyway, I figured out after listening to him and talking to him that he was just soooo bored with the job that requires no focus really, that he had too much time to think about how hot it was, whether things were fair, etc. and even imagined that everyone was talking about him after he was corrected on a mistake. With the 36 and then 54 he was able to handle things but he was I no way focused enough for school or even tasks at home. We put up with it because we knew he needed to be off for a while and we worried constantly about his driving but felt a break was the best thing. Not a bad summer over all but it was summer.

Yesterday we went to the appt. He was scheduled at 1 and my daughter with a different provider at the same place at 1:30 so that I could be with them both. My son did not want to go to his apt alone even though he just turned 18. His doctor basically missed our app time together and I reluctantly agreed to go to my daughters apt while he waited. He texted me at 1:22 that he was in with the doctor. While I was making arrangements to leave my daughter and walk down the hall, he texted back and told me he was done....at 1:24. I walked down to the office to see how things went and she told me she had prescribed 36 mg and he was done. I immediately questioned that low dose and she told me he had said he had a good summer and that 36 had worked for his job and that his appetite was better and that we would try this. I said...no he is up to 54 now and it is not enough and we need at least the next does to even consider success t college. She then told me he is 18 and can do what he wants and that he is probably just inattentive now and will be great at 36. If after a MONTH!!!! he feels school is not going well, he can talk to her and she will raise dose. I have never seen red literally until yesterday. I felt anger and betrayal just hit me like a wave. I felt like I was talking to a stranger. This woman had always valued my thoughts, always tried to lead my son to good decisions, helped us get scholarships and had even given me her email so I could update her. She KNOWS the issues he has had.....not talking, not standing up for himself, shy, unaware....she knows we are working on this and sabotaged everything with a 2 min "conversation".

I tried to talk with them both. My son stood there like a deer caught in the headlights. He was frozen and out of his element and said nothing. I tried to tell her that although his records now show he is 18 that nothing else has changed over the last two months. That we still support him in most every way...financially and mentally and with his ADHD. She told me I should be happy he is even willing to take his meds. I basically said that that he had wanted me there and that if he really is able to make all of these decisions without his family than maybe she should bill him! I am PMSing and may have said too much.

So we left with a 36mg prescription to start the biggest transition of his life. I feel like this has to be fixed somehow. He started talking IN THE CAR. Ugghh.... he told me he did not want things to go this way, that he was unsure what to do or say...that he felt like she was in a hurry and he thought they were just making small talk while waiting for me then she said here's your prescription, your done. He answered her questions but she did n ot ask many and he is not one to elaborate ever. She also told me that if my husband had a problem with this he could call. So we he saw his visibly shaken family, he called and left two messages none of which she returned until this morning while he is at work. I tried again to talk to her and it was like dealing with a stranger again.

I know this is long and I apologize but I don't know what to do. How should we handle this? What if she refuses to change his prescription? He will not know he has a problem at school until it's too late. I have prayed that with his current support he would make the needed changes to succeed in college.....but I never dreamed she would take the meds away. From 90- 36 without even discussing with family who sees him daily and she did it in 5 mins!!

My daughter usually also sees her. I am so mad that I cannot make any decisions until I calm down. I want to take both kids and find a new doctor but I realize the futility in that. We looked for a year once before when she had a baby to find another doctor and it was a horrible experience. She has been a god-send....until now.

Kathy

[jw]

Hi,

I think you are going to have to get your son to call her office and request a return to his old dose. If you need to, stand next to him or write down what he needs to say. My son is heading off to college in a week as well, and at our last appt his dr said if he wanted to make any changes to his meds to wait for second semester, once he has gotten used to school, so maybe your son could say that is what he wants to do I.e. wait to make changes.

You might also ask the dr's office if there is HIPPA papers your son can sign that will let them talk to you, and check with your son's college to see what he needs to sign so you have access to his medical and educational records there.

One last thing, you might check with the school student health to see if they will if they will prescribe meds for your son. Some will and some won't.

Good luck, jw

[kc4braves]

I told my husband if I had known this was going to happen, we would not have gone off the meds over the summer. He cannot return to his previous dose right now. He would be a zombie on 90mgs after being off all summer but both 36 and 54 are almost like nothing.

My husband did talk to her and I had sent an email informing her of the way summer had gone and things I know my son didn't share. He is always short on details while I keep notes about everything. She did apologize for how awkward things were and for not preparing us or him. She said he has to request our presence and he did not....but he did tell her I was joining them and she did not ask him what he wanted or explain how things have changed. She has agreed to send a script for 54 and if he feels it is not enough he can double up on the 36 to make 72. She had also made his next apt for DEC! Now he has one for September 8th.

He has to learn to speak up and think about what he says. Others cannot read between the lines as we can. I knew when he said 36 was better and he could still eat he meant better than nothing. She took it to mean better than a higher dose.

He does have to sign papers at school. I'm glad you reminded me.

Kathy

[healthy11]

kc4braves, I'm glad the Dr. agreed to write a script for 54, and told your son that he could double up on the 36 to make 72 if needed. I'm not sure when his college begins, but will a Sept. 8th appointment give him enough time to actually attend classes and determine how the meds are working? (I'm forgetting...will your son be attending a college nearby, and/or still living at home where you can help him evaluate their effectiveness?)

[kc4braves]

He starts on Monday. We are moving him in this weekend. He will be 1.5 hours away and will come home on weekends ( or he plans to) for a while. I am just upset that we had what I call a plan of care and she threw it out the window. We had mutually agreed to try taking him off the meds for summer. We usually do not do this because life is better for him with the meds and he drives now and works. We were going to try it for the week before and during our long vacation. Then play it by ear after that. She said he could take a low dose for work if he needed to or if we saw that he needed it for other reasons. The plan was made in June to meet back up yesterday, get him back on his meds and try the new amount ( hopefully a bit less than 90 so we could go back up to that when needed) for a week before school starts. All were in agreement. No mention then of the fact he would be 18 in 3 weeks or that things would change or anything.

None of us ever dreamed she would have a 3 min apt with him without us and prescribe a dose lower than he has EVER taken.....EVER. We used 36 this summer but it is not an effective dose. My husband addressed the 3 min apt and she said, "well it was 15 mins by the time I met with him, then talked with your wife ( in the hall) and then weighed and measured his height. OMG! She was done with him. Her door was open so I stuck my head in to see what the deal was, etc. She never stood up and I never went in. I was so upset that she was telling me he was taking 36 that that is what he wanted and I couldn't do anything about it. Then after I gave up arguing in the hall ( so much for confidentiality) I asked had he gained back all of his weight or grown any and she said she had not done any of that. Then she measured and weighed. I just think she screwed up all the way around.

This what not supposed to be complicated. We already knew the medicine he would take and that it works. He was just on a high amount and it was not quite as effective so we tried to solve several problems over the summer. He gained 20 pounds, he gained a shoe size and he doesn't need 90 mgs....no height increase, though. But 36 is too too low and we all knew this. I wish he would have just told her that when she wrote it down. He says he did tell her that 36 worked better for his job but he swears he meant better than not taking his meds which was bad ( with his job). She took it to mean better than the 54. He also told her focused better. Well, he did focus better than without but that's not saying much. He did enjoy eating but he knows that is not the goal of school year and she knows that too. In my mind, even if he is an adult, she is responsible to lead him towards the right things and putting eating above focus is not responsible at this point. She also volunteered the info that we can't make him take medicine...that he has a choice. I find that to be an undermining tactic and don't understand why she felt that was necessary. He will mature over time and be able to determine that as he goes...but why suggest irresponsible behavior right before he starts school?

As you can tell, I am still angry. I hope the jump from 54 to 72 is not too much at once. My husband told him to jump up to the 72 for the start of school so he doesn't miss important information right off the bat.

He will be prepared to discuss things with her on the 8th. I just wish we were going to be with him more to see how the meds work. I know how deep a hole he can dig at school in a few weeks time.

KAthy

[kc4braves]

He is going to a fairly small regional university. They have about 3900 students many of which do not live on campus. It's about twice the size maybe of his high school. It is a full service campus with a football team, etc. several dorms, cafeteria and other things you expect from a college but on a smaller scale. Most freshman classes with have around 20-30 students. We were told never more than 50 in any class and no grad assistants. We have visited with one of his professors three times now and he actually ended up being his advisor and advised him not to take him for history that semester. LOL My son told him that he really needs to work on writing papers better and hopes to improve this semester so he told him not to take his class because he requires a lot of writing where the other teachers require fewer papers. I thought that was cool. We also met a professor in his possible major. We stood in the hall of the geography wing and talked for 20 mins. Very nice people very approachable. We visited with the disabilities person in the Student Services department and she was already very helpful. She got his food straightened out right away and will meet with him on Monday to figure out accommodations. She told him her door is always open and she can help him brainstorm but that he needs too talk to his teachers often. About the food, the cafeteria looks wonderful but they do not allow take out boxes and are open limited hours. There is no where else to use the required meal plan. So, we requested with her help either...1. remove the requirement that he purchase a meal plan or 2. Allow him to take food back to the room to eat later when hungry ( between 8pm and 2 usually). The doctor wrote a letter explaining how his medicine drastically reduces his appetite, etc. They ask which choice we preferred and we chose take-out boxes. So now, he can choose either or. He can eat there or he can take out. We also requested a private room for this year and got that. Ii think he/we have done the best we can choosing a good environment for him and trying to get things started well. it really is up to him to see if he is ready too fly. I just didn't want him to try to do all of this without his medicine. There are so many adjustments to make. it's all a process and he always gets it.......EVENTUALLY! It may not be this year that he is independent. I hope he can at least keep the 3.0 he needs for one of his scholarships. he needs a 3.2 to keep them all but with a 3.0 he can still go there without too much debt. I am not throwing him to the sharks. The doctor may, but I plan for him to be in a boat.....a big boat..... ( watching Shark Week

Kathy

[healthy11]

kc4braves, we understand what you're going through. Starting college is a HUGE transition for every young adult, whether or not they have learning and attentional issues. I'm guessing that in a small university, they may not have an on-campus medical center, so they probably won't have a Dr. who could manage his meds there. You mentioned that your daughter sees a different provider in the same facility as your son's psych...Is there any chance he could switch to the same person? Or are both of them child psychiatrists, and he really should be looking for an adult psych at this age, anyway? Again, being 18, I realize your son would have to be the one to make the calls, but I would urge him to do so. (Being a boy, maybe your husband can "get through to him" better than you, and maybe your son would do better in talking to a male Dr., as well, if any are available?)

[kc4braves]

They actually both see the same provider. We have used her for years. We started at a different place with her then a few years back, when she had a baby, she left that facility and didn't work for a year and we were told she was not returning. That was just awful. We tried two providers there with different degrees and it was really bad. They assumed things about us and bad mouthed the provider we had used. So I was forced to look for a doctor outside of that facility. We went to two doctors highly recommended by others who told us that they could not prescribe two mediations ( for instance Concerta AND Intuniv or Concerta and something to help with sleep) they also looked at my daughter's meds which was the patch and a booster and told us they had never heard of a patch for ADHD , how stupid and they would not be prescribing that. It was horrible. One basically told me that my son would take 1 med, it would wear off about 3 pm and after that he would not be functional so needed an IEP and Special Ed placement if necessary. Finally, the current provider returned to work at a rearch facility and we returned to her. Things had been great to this point. So you can see why I hesitate to make changes. She mostly does see kids but she and the other doctors do follow adults as well.

My daughter is participating in a drug trial for another methylphenidate drug the are testing. We decided since things were not going so well with the patch anymore and Concerta didn't work for her nor did Vyvance or Focalin for different reasons, that we would try something different over the summer. She has been trying this new medicine that is why she was seeing someone else for the trial. It has been a interesting process but I'm not sure the med will do much. In fact, I have about given up on anything helping her much. I really feel like the low estrogen with PMS which can last 10 days, just sinks her ship. I'm still trying to figure it out. Anyway, the male doctor we were initially seeing with the study, just upset me because he asked us why we were there if she had none of the symptoms he was reading off. I tried to explain that she is INNATENTIVE not HYPER!!! Most all of the symptoms they are looking at my son has had but not my girl. So, we asked for another doctor and the woman seemed more understanding and easy to work with. She might be someone I would ask to follow Tyler but not the make doctor who reminded us both way to much of the males we tried to use in the past who knew nothing about the changing treatment of ADHD.

So...way more info than you asked for but this is why we are going to try to make things work with our current provider. I am hoping when he is older, if he moves away he will be able to find a good provider. We had another good one in Alabama but you do really have to keep up with everything yourself and advocate advocate even with good providers. I tried to explain to my son that he is the only person long term whi is going to stand up for him. Everyone else has their own life so he will have to make sure they do and understand what HE needs.

[healthy11]

Under the circumstances, another option might be for you to sit down with your son and help him write a note to the Dr., clarifying what he was trying to say (ie, being on 36 mg. was better than being on NO meds, but not as helpful as when he was on the higher dosage of 90 mg.) I've done that with my son before, when I sense the information he's gotten might be due to some kind of miscommunication.

In fact, taking it one step further, I'll confess that when my son first needed a letter from his psychiatrist to give his college in order for them to provide accommodations, I "ghost wrote" the letter FOR THE DR. My son has been seeing the same psychiatrist since he was age 10, and it was easier for me to generate what the university wanted, rather than have the Dr. go back through all his records and write something up. The Dr. actually read my summary, thanked me, copied it onto his letterhead, signed and sent it in the timeframe of my son's 30 min. appointment, which made things easier for all of us. (My point is that helping your son, and/or the Dr., by putting things in writing can often be helpful.) Hang in there!

P.S. On a separate note, you mentioned that your son wants to improve his writing...he should definitely find out if there are any special programs that the disability office offers, or perhaps there's a "writing lab" on campus (although they may be there more to proofread what students have already generated, not necessarily for tutoring.)

[kc4braves]

We went to another office there where they help with writing and other things. I think it was called Secure Success. it is in place to help first generation college students, students with learning disabilities and financially disadvantaged. We met a lot of people and received so much info...but I think this is where we met a man who helps kids with papers and told my son to come by any time. I think there is also a writing lab that is for anyone. We need to find out all the details because his excuse will be, " I don't know where to go." I just hope he will figure out when he needs help and then go get it. Both are issues.

[empeg1]

Kathy:

I so relate to trying to communicate with a doc who begins the, he (she) is 18 routine. But, that routine is here to stay. Once your son is at college the need for him to speak up will grow. So, if your son needs services or accommodations at university he will have to contact the program for the above at his school, not you. Colleges are pretty adamant about parents not calling. However, you can help your son to advocate for himself. You can assist him in writing a letter if need be. You can help him practice what he will say. You can assist him by writing an e-mail he can use for reference. But, in the end, he will have to speak up. As for the doc, she was cutting corners with an appointment that was way too brief to meet her own schedule not your son's needs. That said, she cannot take what you say over your son given the fact that he has reached the age of majority. A HIPPA release will be necessary. I also suggest that your son change to an adult psychiatrist, one that specializes in working with young adults, if possible. Finally, not psych related, I hope your son does not come home every weekend. Meeting friends is such a huge part of the college experience and growth that occurs. His ability to meet people and socialize will be diminished if he comes home every weekend.

[kc4braves]

Trust me, I have encouraged him to stay at school on the weekends...encouraged him to find a church with a college group, etc. Tried to talk him into coming home only every other weekend even. I know it will change at some point but I told him that you meet people easier by being there. He is not on board with it yet. He has only budged in that he may stay over until Sat morning sometimes then drive home. I am not going to tell him he can't come home. I do think most people there may leave on the weekends, though.

He has to deal with the disabilities office himself....on Monday! He called and made the apt a few weeks ago. I have been trying to get him to think about what he needs specifically. I think he could have done this meeting in May but I'm not sure on 54 mg that he can focus enough. People don't get it. I see that things are not the same with him but if you don't look hard or know him, you can think he is just like any other teen boy...easily bored, needs to be entertained, impatient, etc. We keep trying to give him ideas about how to approach his teachers about what he might need. Time will tell whether he will do it or not. I often go over with him what to say or help him write down what he wants to say in phone calls, etc. I told him that with all the technology there is now, he really is at an advantage over my generation. He can email his teachers if that helps him break the ice with them or get quick info. I had never seen a cell phone in college. With computers, he will have access in some classes to slides and other helpful info. I had to write as hard and fast as I could. I have also been trying to get him to look at educational apps that might help him. He just doesn't get it.

He has a shot at it. if he doesn't take the risk and talk to people and advocate for himself, he will have to find another way to go to school or get a job or both. But he has this chance if he will use it.