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Newly diagnosed Questions

I’m new to this. My son is going to be 8yrs old and was just diagnosed with ADHD along with ODD. We have thought he had ADHD since he was 4 but everyone just kept telling us to wait and then his behavior got out of control. I’m wondering if there id any tips that you can give to make this easier for him starting on medications.

Replies

My son is 5 years old and was diagnosed with ADHD. I felt there was something else going on, like ODD as well. He got that diagnosis at 4, last year. This year, just a few days ago, he was diagnosed with autism. I’ve went through a couple of medications and Vyvanse seemed to work the best. I tried methylphenidate, metadate cd, intuniv, guacafine, and the last one Quillivant XR. I expressed to his Developmental Pediatrician that the Vyvanse worked but it didn’t last. So finally she gets it and subscribed him with Vyvanse twice a day. The process of medicating your son is stressful only because you have to find the right one. Medications work, but if he’s looking like a zombie then that’s not the right one. The right one will do what it’s suppose to do. Vyvanse makes him focus and it also stops his impulsive behaviors. I love it, it just didn’t last long enough and the last doctor was afraid to prescribe a second dosage. I got a new doctor, I felt is more experience, and she has prescribed Vyvanse twice a day but on the bottle it says once a day.

Posted by vabronxboogie on May 15, 2014 at 9:43pm

Thank you. Yea my son’s pediatrician kept telling me that he would grow out of the behaviors at school once he got old but he is in 2nd grade now and even the teacher has called saying “I don’t know what else to do” he became so defiant at home and school that I finally gave up and took him to Psychologist to have him tested. My son is very smart with superior intelligence according to his test but can never sit still and does random stuff and will tell me his brain told him to! They are just fixing to start him on Vyvanse 20mg. And I am reading all these post stating that its supposed to last 12hrs but that it only last maybe 8 if your lucky. I’m guessing it common?

Posted by txmama2 on May 15, 2014 at 10:10pm

lol My son is 5 years old now and it does not last 12 hours. He first started on 30mg and it worked great but not for his after school program. Then it stopped working all together but once they went up on the dosage for 40mg, then it worked again. I’ll be giving him 40mg twice a day after the teacher tells me when she feels it wears off, or if it doesn’t then I’ll have to see what time it wears off in his after school program. Without medication, he will hit the kids and the teacher. He is defiant at home and school without the medication. I’m able to handle it at home, but I do love Vyvanse because I do things with him on the weekends. Every weekend we are booked doing different things. He hasn’t got the odd diagnosis but I treat him as if he does. I have learned to change my wording. I give his teacher 5 carnival tickets and if he isnt doing good then he gets one ticket away per each bad behavior. This works because my 5 year old knows on Fridays we count the tickets and he must have at least 15 tickets to pick out a toy. I use pinterest for different ideas on how to do positive discipline because spankings do not work at all.

Posted by vabronxboogie on May 15, 2014 at 10:33pm

The doctor says his metabolism is causing the medication to run through him faster, so it might last longer for other people, but never for him.

Posted by vabronxboogie on May 15, 2014 at 10:34pm

Once my son was diagnosed, I don’t believe he’ll grow out it. It’ll just be milder. The medications help to seize my son’s behaviors. The school has made a lot of accomadations so I didn’t feel I need to go through an iep. I’m going for one now because he’s going to another school. I’m ADD, I never totally outgrew my adhd. It’s just milder now.

Posted by vabronxboogie on May 15, 2014 at 10:36pm

Oh wow just more stuff to think about! lol They want me to take him to start seeing a therapist also to try to teach him to control his impulses but I’m here on one end saying whatever helps but at the same time its all kind of overwhelming because the last 2 months he has been hitting other kids at school he even started hitting his little sister if she like turns off the light when he want to.
My son is the same way spankings have never worked with him and if I take away his electronics then its an all out battle.
Who did you have to talk to at his school? I know the nurse has to know about the medication and there is already notes in his file about his behavior issues and stuff. The psychologist said he would help me to know how to deal with the school but I didn’t need another appointment with him? lol I’m so confused!

Posted by txmama2 on May 15, 2014 at 10:56pm

In writing ask the school for the process of an iep. First reasearch it. I used this website to write it and fax it to the school.He’s really smart, but I’ve had medications stop working and his behavior will get in the way of his learning. My son is 5 so we do play therapy. Your son is 8 so cognitive therapy will help.

Posted by vabronxboogie on May 15, 2014 at 11:12pm

Ok. I definitely will. Thank you so much for replying and for the help.

Posted by txmama2 on May 15, 2014 at 11:14pm

I don’t have experience with Vyvanse as my son is now on Biphentin (it’s methylphenidate, same as Ritalin) and that seems to work well for him.  But my #1 top advice for anyone newly diagnosed is to learn as much as you can about ADHD.  You need to know what it is and what it isn’t.  You need to learn what medication can help with and what it can’t.  You will need to educate his teachers and support staff, and push to get appropriate accommodations for him.  And most of all, you’re going to need to learn how you can best help him, because an ADHD diagnosis basically just means he can’t do what he needs to yet, so you are going to need to be his support until he can.

I really like anything by Dr. Russell Barkely (there are some really good videos on YouTube) , but especially his book Taking Charge of ADHD.  The Explosive Child by Dr. Ross Greene is very good for the “ODD”.  (I say it with quotation marks, because you may find that as the ADHD gets under control, and as his life isn’t as chaotic and out of control, that the symptoms of ODD diminish as well).

Posted by Rai0414 on May 15, 2014 at 11:18pm

I’ve dealt with Ritalin, Methylphenidate, metadate. Seems like I had to deal with mood swings, depression, etc. But Vyvanse isn’t like that. The advise I’d give is if this medication changes your son for the worse, then it is not the right medication. I don’t mind trying new medication. My goal is to find the right one. Some people get so frustrated trying different medications. I’m in it for the long hall. I want to help my son and I advocate for my son. It’s not his fault. If he’s having problems in school research IEP and going through the process. I keep my son busy but at school he is bored. He is above and beyond. I homeschool him part time.

Posted by vabronxboogie on May 15, 2014 at 11:25pm

Normalize it for him as soon and as much as possible. What I mean is, don’t be secretive about his diagnosis with his teachers and school and your adult friends. You have to carefully pick which friends to tell of course - the last thing you need right now are judgy people all up in your struggle. And you let him pick which of his friends to tell and when. But you treat it as if it is like needing glasses - problem - solution.

It is not that easy for you to deal with of course because of, well, parenting guilt. But we have all been through this transition period from diagnosis to treatment. It is actually more difficult for us parents. Kids are much more resilient than we so long as they aren’t being made to feel like they are a problem. People keeping secrets or blaming them for their ADHD is what has damaged lots of people with ADHD.

And talk to him often about it. This will help him find his own ways to think about it.

Good luck. It can be difficult at times but you will do fine.

Posted by YellaRyan on May 16, 2014 at 3:33am

You’ve taken the best first step by coming to this group to ask the question.

As far as introducing him to medication, you have to develop a good relationship with his doctor, as you should be able to ask any questions about the process. Every kid is different, and although some medicines may work for may, they may not work for your kiddo.

If you think it is a stupid question, ask. If you think you know the answer and are not sure, ask. If you don’t understand, ask. When in doubt, ask.

My son is on Vyvanse, but it is not working that well for him anymore. So, I will be asking questions about adding Intuiniv. We have a very supportive doctor who loves my son to death, so I can be outright upset in front of him.

As far as making it easier for him, make sure you give him a lot of encouragement once he starts taking them. Also, keep track of any changes and, if too extreme, contact your doctor. However, do continue to
encourage your kid to take his medicine. I don’t have to go into details with my 9 year old; as long as they understand you are trying to make him feel better, he’ll understand.

Good luck to him!

Posted by JockDad on May 16, 2014 at 4:49am

Thank you all for the words of encouragement and the help. The last week has been very frustrating for me but my son understands the need for the medication to help calm his mind as he puts it! Lol.          You all have been very helpful and I hope to be able to continue with this site for any help I may need. I have a feeling it’s going to be a long road but I’m now optimistic and hopeful that he will get better. Thank you again for the advice I will be trying anything and everything to help him!!

Posted by txmama2 on May 16, 2014 at 6:13am

To the various different posters who say that Dose X of Vyvanse doesn’t last long enough therefore the thing to do is to take Dose X twice a day. 

If Dose X is beneficial at decreasing some ADHD symptoms and not causing any bad side effects then the simple fact that it is working but not lasting as long as it should (~12 hours) means that Dose X is too low. 

There is nothing “wrong” with dosing Vyvanse twice a day (it can be done quite effectively for those who need longer than 12 hours of coverage and who also have better sleep ON stimulants than OFF, which is a surprisingly higher number of people than most would think).  However, if you can tell that Dose X is working but just not for long enough what you will find (more often than not) is that when Dose X is increased, not only will it last longer, it will also work better.

Posted by BC on May 16, 2014 at 7:16am

haven’t read through all of these responses so I’m not sure if this is the kind of thing you’re asking about or not but when my son first started taking meds we never referred to it as ADHD. He was a bit younger than your son, I think he was 6 or 7 when he was diagnosed, but we told him that he had a race car brain with bicycle brakes (can’t remember which book I got that from, but I loved it). We told him that his brain was so fast that other people couldn’t keep up, and while we never ever wanted to slow his brain down, we did want to give him an opportunity to interact in a way that other people could understand him. I don’t know if he’s ever really felt any negative connation about being on the meds, and I hope he never does!
My son is older now (he’s 11) and we’ve had more detailed conversations about the need for meds over the years but I found this to be very helpful advice when we were first introducing medications to him.
Good luck!!

Posted by eryn on May 17, 2014 at 11:01pm

As a practising psychiatrist , with a major interest in ADHD and its treatment, I need to say that only ADHD of hyperactive/impulsive type or combined responds to stimulant medications, not the inattentive type who may show side-effects (read my postings on Inattentive ADHD, impulsivity and gifted groups).  For hyperactive/impulsive subtype, the younger from say age 7 to about adolescence, the patient needs higher dose then lower dose as due to brain developmental stage, dopamine that stimulant increase in the brain are less needed as one ages.  dopamine is like fertilizer for the brain and as it grows, it needs less fertilizer and at older age and when prescribed inappropriately, it can kick back and show side-effects as the brain only absorbs it if needs it and react untowardly if does not need it.

Posted by Dr.Showraki on May 18, 2014 at 1:31am

Dr. Showraki:

I still haven’t made it much further into your book (busy time of year), but since you brought it up—what do you suggest for those inattentive types if stimulants don’t actually work for that?

Posted by BC on May 18, 2014 at 2:42am

MY 8 yo daughter was diagnosed with ADHD (combined) and after *a lot* of attempts at alternative tretaments, we just started her on Quillivant (methylphenidate)....its been 2 days but so far NOT good. Her impulsivity is far worse, she’s aggressive and moody, everyone is walking on eggshells. She’s pretty much just mean!! More focused, for sure, but not fun to be around at all. We took SO long to arrive at the decision to try meds, it’s just so disheartening that they don’t seem to be working either. :( Soooo frustrated and confused right now.

Posted by Shpkrp8 on May 19, 2014 at 2:16am

Behavioral therapy in conjunction with medication is great for helping with impulse control and helping the children to understand what’s happening in their bodies/minds.  My child used to say the same thing about his ‘brain’ telling him to misbehave.  He’s been seeing a therapist 2x a month for the last 9 mos and I can really see improvement in his ability to calm himself and express his feelings with words instead of tantruming and hitting.

Posted by Mom2ADHDer on May 19, 2014 at 9:00am

@shpkrp8,

It sounds like your daughter may have been started at too high a dose. Talk to the prescribing doctor about what you are seeing and ask if you can lower the dose of Quillivant. The beauty of Quillivant is that the dose can be tailored in much smaller increments than long-acting pills.

Penny
ADDconnect Moderator & Mom to Tween Boy with ADHD and LDs

Posted by adhdmomma on May 19, 2014 at 6:01pm

Thank you all so much for the advice. We go back to doctor tomorrow and these are all things I will be talking to him about. My son is very smart and I have explained to him the need for the medication and what it is supposed to help him with. His response was ok and if this one doesn’t work to help calm me down then we can try others right? Also about the therapy sessions he is supposed to start those soon as well.

The doctor also said that I could only give it to him on school days and not have to on weekends but everything I have read says it’s not recommended. Any thoughts on this?

Posted by txmama2 on May 22, 2014 at 6:08pm

School is not the only thing in life that is more difficult with unmedicated ADHD.  I could always cope better with school than with “real life.”  If I stopped taking meds on weekends, as an adult, it would simply mean that everything about the weekends would be more challenging…& less productive…& less enjoyable.  With kids the only “real” compelling reason to consider occasionally stopping on only the occasional weekend would be, IMO, to get them to eat better/more.

Posted by BC on May 22, 2014 at 6:33pm

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