Question for all you experienced moms!

rob#30

hangin in there
I have a question fro everyone. Do our difficult child's ever "grow out of this" ?? My difficult child is 12 (13 in December) and although I now believe he has suffered from ADHD/ODD for many years I was not aware (in denial!) of it until 2 yrs ago. I dont know if I can handle the thought of this going on his whole life! Will he ever come off medications? If the answer is no, he will never grow out of it, than what the heck kind of behavior are we going to be looking at when hes 17, 18, 19?? Obviously he wont be bouncing of the walls, swearing at me, annoying the **** out of everyone, being afraid to walk up to his room at night etc.. when hes a grown man. Or will he?? So do I dare ask what will his behavior be like as an adult? I see from a lot of the profiles that some of you have grown children. Any input on what the future holds for my bratty, annoying, beautiful, loveable difficult child??
 

Sara PA

New Member
The brain continues to change and mature until a person is about 25-26. No one knows what the final results will be until the product is finished.

His anxiety is high? Is he taking stimulants? They can cause or increase anxiety and shouldn't be taken by people with high anxiety or who develop high anxiety while taking them.
 

TerryJ2

Well-Known Member
That's why we're warrior moms. :)

Some of this they outgrow, some of it we train them to cope with, and some if it is stuck forever. It depends upon what your child's diagnosis is and how intensive the therapy is.

No one can look into a crystal ball. I'm not sure I want to. (Gulp.)

I try not to think about it. Sort of like the AA motto, One Day at a Time. Otherwise, it's too overwhelming. I take joy in the little things--and post them here to brag, as do so many other moms.

I don't know the extent of your son's ADHD, but I've met many extremely successful ADHD adults (incl. difficult child's camp counselors, who are all off their medications now!), and incl. a millionaire author, an astronaut, and several attorneys. There are advantages to ADHD, especially the H part. Imagine the energy you'd have, LOL!

Many times I tell people that if my difficult child weren't so cute, I'd have killed him by now. :) He's got the biggest, brownest, most beautiful eyes. I try to think about that when I'm down.

Yes, there is hope. The results don't always manifest themselves they way we want, but still, things do generally get better, one day, one shoelace, one school assignment, one hug at a time. :)
Sometimes, it's not that the kids get that much better; it's that we moms learn to detach. And sometimes that's the hardest part of all.
 

BusynMember

Well-Known Member
He will not grow out of it completely in my opinion. For one thing, ADHD/ODD is often a wrong diagnosis. I know it was hard for your to accept THAT, but you may have to consider that your son has an even more serious diagnosis than ADHD/ODD. If you are worried about his future already, I am assuming he is acting out badly and just not "getting" life. You in my opinion need to consider that he may have more going on, and it could be more serious. I never look through rose-colored glasses with children because doing so, even with the best intentions, can harm them, even though that is the LAST thing any of us want to do. My motto is and always will be "Leave NO stone overturned; better to be safe than sorry."

If he gets another evaluation and you find out if something new popped up (so many younger kids are misdiagnosed) and he gets the RIGHT form of intervention for whatever is wrong with him, he can and probably will live a very productive life. But if you don't change anything, including the type of therapy/medications/interventions he is getting he is unlikely to change and may even morph into a drug user. in my opinion too many parents are complacent about diagnoses. If the person in charge of your child's care is not making your child better, then it is time to move on and look for different help before bigger problems emerge (such as the aforementioned drug abuse). ADHD/ODD can actually be bipolar or high functioning Autism Spectrum Disorders (ASD) and it won't help to treat it as ADHD/ODD unless it really is. in my opinion the best thing you can do is to have him see a neuropsychologist for a new, updated evaluation NOW, while he is still young enough and in your control. Because, yes, it can get worse. If you want to see how it can turn out, check Parent Emeritus on this forum. These are the grown difficult children who did not get better.

On the other hand, some kids get the right help and improve. My own daughter was a drug addict who turned her life around. My autistic spectrum son is a wonderful fifteen year old who is on his way to being a productive person. At one point we thought he'd have to live in a Group Home, but he had such wonderful interventions, that is highly unlikekly. He may need an assisted living apartment, but that's an 85% improvement.

in my opinion there is an excellent chance that the ADHD/ODD is either really early onset bipolar or high functioning autism. I would at least check into it, If this kid has spend years on stimulants and/or Straterra and is still not better does he really have ADHD? And ODD rarely stands alone.

Get him a neuropsychologist evaluation and see if he agrees with the diagnosis.
There is hope. My kids are proof. Good luck :)
 
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Sara PA

New Member
Concerta is a stimulant and 72 mg/day is the highest recommended dose for people 13 and over. Under 13, the highest recommended dose is 54 mg/day.
 
Yikes ~ Yes, Concerta is a stimulant!

difficult child was on 36 mg of Concerta ~ we tried 54 mg for 2 days and he was still "speeding" at midnight! Try standing at a table constantly moving your legs and trying to color ..... or trying to drink out of a straw standing up, moving the cup with- the right hand and straw with- the left hand. The 2nd night I took him to the ER (our dr was on call) and they gave him a relaxant ~ needless to say we didn't continue that high dose, but I tell ya what, it really seemed to get his mind in motion. He talked about the air flow in the van, about how he had to fold a piece of paper in half and write his name in a certain place (this talk was in 3rd grade, but the folding paper was in 2nd grade), he literally did not stop talking for longer than 5 seconds.

I agree ~ one day at a time. I don't know what his future holds (his psychological testing says his mindset is likely to land him as an architect, mathmatician ~ work alone in a cubicle, but the challenge would come with getting the education to go on to those types of jobs). My difficult child is almost 9 (6 days to go) and we've been going through this since 4 1/2 .... I still don't think we have an accurate diagnosis.
 

rob#30

hangin in there
Calgon, wow... You just described my difficult child all the way!! He NEVER STOPS TALKING OR MOVING!!!!! It seems like a couple of medications we tried in the first 2 wks of taking them they did calm him down but it always comes back. Its almost like he is "speeding" 24 hrs a day weather hes on medications or not. It is way more intense if hes on no medications at all. I am not kidding, he never stops! Hes in my room at least 4-5 times through the night talking to me. "I cant sleep" "I heard something" etc... I try everything, explaining that I have to get up @ 5am, I usually resort to yelling & threatening to put a lock on my door. I am sure he would just stand out there knocking anyway so I problem shouldnt do that! Family members have said to me for years now, "I dont know how you do it!" I love this child more than life but he is so mentally exhausting to me. Hearing from everyone here is really making me think I am handling it all wrong. What other options are there as far as medications?? He needs something to calm him down!!!
 

BusynMember

Well-Known Member
Find out what is really wrong with him. Take him for a neuropsychologist evaluation. Then you will see if he needs medications at all (stimulants are SPEED and speed is abused by teens--my daughter abused it). Find out if he really has a mood disorder, instead of ADHD/ODD, or if he has another disorder.
What kind of behavior does he display other than being hyperactive? By the way hyperactivity is seen in disorders other than ADHD too. And defiance is seen in many disorders (almost all of them). The older they get, untreated, the harder they are to control. Stimulants are NOT the only medications. They are what doctors use for ADHD, but if the speed is souping him up I"d again question the diagnosis. I don't like stims for kids nearing the teens. My daughter told me that kids fake ADHD, crush the medications in pillcrushers, and snort it alone or with other drugs, like cocaine. That's why it's a controlled substance. It doesn't seem to be helping your child so I'd try to find out if something else is going on.
 
How did your son act on lower doses of Concerta? Was he still going going going? It may be he's on too high of a dose or it may be something totally different so the stimulant won't help no matter what dose he gets.

I've read about "academic dosing" ~ the parents that get their child ADHD stimulant medications because the child gets better grades, but don't have ADHD nor have ever been diagnosed.
 

Marguerite

Active Member
Rob, before you panic, slow down and think about the entire situation. Next, take on board everything you're being told here (and by the doctor), add in a healthy dose of your own intuition and observations, then work out a list of questions to ask the doctor.

Here is my contribution to what you're being told here.

1) Although we too were told, "He will grow out of it," we now believe this is rare, if it happens at all, and is not likely to happen for our kids. HOWEVER - what DOES happen (based on our observations) is that SOME maturity comes in, as well as their cumulative experience and practice at living with a brain that is wired differently and which pushes them in different directions.

2) We adapt, in other words. Your child will adapt. Whatever the diagnosis, your child is the sum total of his environment and his genetics. His genetics also connects to how his brain is wired. His environment is not only the upbringing you provide, but also schooling, friends and also the way his own brain responds to the world around him.
Example: A science experiment ini which students put on glasses which make everything appear upside down. Trying to navigate around is really difficult at first, as you just want to hold on to everything. But you adapt and learn that if you move your hand THIS way, you will see it THAT way. You know this intellectually. And after a number of days (a week?) of wearing these upside-down glasses and putting up with the frustration of it all, your brain adapts, new pathways have formed and the world appears right-side up.
Then you take the glasses off, and go through it all over again until your brain re-adapts.
Our kids adapt to their brains and the differences.
A kid NOT on medications will adapt to their condition, but for some it can be a huge struggle, sometimes too huge. For those on medications, the medications can help speed up t he adaptation, but remember you are adapted WHILE USING medications. Stopping the medications means you have a different adaptation (more to do?)

3) Your son is on Concerta. It is a long-acting form or ritalin (methyl phenidate) which is a stimulant. Stimulants can be really good at helping kids with ADHD focus more intently and be less distractible. It seems paradoxic for a stimulant to do this, butt the theory behind it is, in kids with ADHD the part of the brain which is supposed to turn OFF distractibility, isn't switching off properly. A carefully applied stimulant, in the brain of someone with tis particular problem, works by STIMULATING this 'off' switch and thereby enabling the kid to focus.
The trouble is, the stimulants are not a PERFECT application, they are only as close as medical science can get. They are less of a blunt instrument than, say, caffeine (which has been recommended to me as an alternative "natural" stimulant - I pointed out that another natural stimulant is cocaine and I'm not about to dose my kids with that, either).
Because stimulants aren't perfect, they sometimes affect more than just the 'off' switch. There can also be other problems, such as rebound.

4) Rebound - both my boys have had rebound problems on ritalin (on Concerta, in difficult child 3's case). But it's not a problem specific to ritalin; while our kids don't get rebound on dex, I've known kids who DO get rebound on dex but not on ritalin.
Rebound isn't always immediately obvious - you can simply consider the problem to be your child's normal hyperactivity, returning now medications are wearing off. Doctors sometimes respond to this by increasing the dosage or by lengthening the number of hours for which the child needs medications in their system. If the problem is rebound, this only helps a little, in the beginning.
For kids with ADHD on stimulants - these medications are short-acting as a rule (even the long-acting forms wear off at the end of the day) and once blood levels drop below a certain point, the old ADHD behaviours surface. Add in that this tends to happen at the end of the day when kids are tired, they've had cumulative stimuli and stimulation through the day and need to process this in an over-tired, overworked brain and you get the evening hassles so well-known to many of us.
Rebound is when this is much worse and seems almost as if the entire hyperactivity for the day has been stored up like energy in a tightly wound spring, and is now being released with destructive force. With difficult child 3, we would see rebound as non-stop talking; fiddling with things until they broke; inability to sit still or stay on task; excitability; moody, extremes of mood from elation to sadness. difficult child 3's best friend is on Concerta (still) and gets rebound, including getting teary at the end of the day as medications wear off. he has even said to his mother, "I don't know why I'm so upset, I can't think of anything that is wrong." He gets less rebound on a lower dose.
The usual option when rebound happens with one type of stimulant, is to try a different stimulant and see if that is better. The trouble is, there is no commercial form of long-acting dex. We have a compounding pharmacist make ours up for us.

If rebound is a problem, you will see it with short-acting tablets too. When difficult child 1 was on short-acting ritalin (before Concerta was available in Australia) we would see rebound every two hours, as he was falling due for his next tablet. Once we switched to dex (also short-acting) we realised the difference between rebound, and medications just wearing off. A HUGE difference.

To test the difference - back in those bad old days, the advice was to give your child a 'holiday' from stims every so often. With difficult child 1 this meant stopping his ritalin during school holidays or on weekends. We found that the rebound problems were still a bit of an issue on his first drug-free day, but tapered off rapidly after that. However, his inattention due to the ADHD was bad again. But we could see which was which and also realised how rebound itself would wear off beginning a few hours after it appeared.

To get around the problem of kids abusing their medications, it is tightly controlled here in Australia. Kids are not permitted to carry their own medications to school or to self-medicate. Most schools have a designated staff member who will medicate the kids, but parents have to jump through hoops first including handing over the medications in the bottle with the prescription label on it, plus a letter from the treating doctor, plus a signed and dated request form.

I now have two adult kids on this, plus a teenager. The two adult kids have not had their medication dosage changed in years, except to lower easy child 2/difficult child 2's because she felt she no longer needed her higher (not that high) dose. I've also seen my adult kids change their behaviour and improve, as they get older and learn to control themselves better. This isn't the same as "growing out of it" by any means. I think they are now as good as they're going to get. difficult child 1 especially is much better now at recognising his own warning signs (of a panic attack) and has his own strategies well in place. This is part of getting older and more mature. It takes them longer to mature in tis way, but my kids at least have demonstrated that they do get there eventually.

Marg
 

Fran

Former desparate mom
I think you will have to ask yourself some serious questions and understand that being a parent is living with whatever your child brings to the mix.

Is your goal as a parent to raise an independent, law abiding, tax paying,functional, young man of character? Or is it to raise a drug free, label free, adult? One may depend on the other but I don't rule out medication the rest of his life. I take synthroid since I was 29 and plan to the rest of my life. Doesn't seem to be a big deal. What I'm saying is, that if your child needs supports whatever they may be, why would you not want to allow this?

I don't believe they grow "out" of anything. I think their maturity evolves as does their behavior but the "brain wrinkle" that is evident now, will still be there but may be eased by learning different behavior, medication, and/or his level of understanding. Different kids are affected differently. Their severity, IQ, interventions all play a part at how they end up when they are adults.

In the end, if this child grows to be a difficult adult, do you not still have a responsibility or maternal connection to still do what you can and to love him? There will be times during his life when we aren't liking our kids even those who are not difficult child's. That's life.

Life gives everyone challenges in some way or another. In our case it is a parenting choice to rise to the child's needs or not. Some parents do and some don't. It speaks more about the parent than the child. A difficult child is all of our specific challenge at this time. I know a multitude of other adults with different sorts of personal tragedy and challenges and once again, how they deal with it is a choice.

I cringed and cried at the thought that my child will never be "normal". It's the fear of the unknown. What does that actually mean? In the end, my son isn't normal and all the things I was terrified about came to be. The world did not end. You still get up the next day and try better. Hopefully so will he.

Set clear parenting goals for yourself.
Take care to get breaks from the intensity.
Look at your son and ask yourself "what does he need to manage?"
Ask yourself how you can parent difficult child effectively.
Evaluate yourself honestly and look for ways to improve.
Remember, he is a kid in a tough situation. Let him know he is loved and you are trying to help him. Remind him that you aren't the enemy.
Remind yourself that he isn't the enemy either.
Try to have fun with him every day.
 
B

bran155

Guest
I always get inspiration from Fran's posts, even when they aren't directly related to something I have posted. So thank you for that Fran. :)
 

janebrain

New Member
I thank you too, Fran! Sometimes I need that reminder that my kid(s) is not the enemy! Wish I had been hear earlier in my journey to have that reminder!

I guess you could say my difficult child 1 has "outgrown" some of her issues--maturity has helped and not enabling has helped and her self confidence rose as she saw she could earn enough money to take care of herself. Since I no longer see her (she is on opposite side of country) I don't know the extent of her mental health issues. When I speak with her on the phone she sounds "normal" but I think there is something just a little off with her and probably always will be. She has learned how to manage it in her own way and she is high functioning now so I guess it doesn't really matter. I will say that when she was a teen husband and I thought we would probably have to take care of her forever so she truly has come a long way.

Jane
 

Marguerite

Active Member
That's a good point, Fran, about whether 'needing medication indefinitely' is a problem.

I need glasses. I've had to wear them since I was 8 years old. I probably should have had them much sooner. I cannot go without glasses. If I had not had glasses, life would be much more difficult for me. I would have adapted, but I would also have to stay near home and limit myself and my achievements to home duties. I would be able to paint, to sew and to read, but I would probably be a danger in the kitchen. I wouldn't recognise people's faces and would need a white cane to get around on unfamiliar ground.

I am very glad I have the option of wearing glasses. Without them I would still function, but with them I can achieve so much more.

I put medication in the same category as needing glasses. Or hearing aids. Or any sort of support. No man is an island. We are social creatures, we use each other, we use props, we all work united in society to make life better for all of us.

Marg
 

seekinghope

New Member
Hello Rob,
I am also pretty new here but I can offer some help from my experience with the sleep issue.
I tend to think that a lot of our difficult child have these hunger periods (maybe due to medications wearing -off)so...
I always gave my difficult child a cup of hot chocolate in bed, sometimes hot milk; my preferred drink. Helped with hunger in the night.
A hot water bottle to help relax, and his stomach bothered him sometimes anyway.
Also, when they were younger I kept the "static " channel turned on, on the T.V. with the light turned way down. Kept his mind busy and distracted from natural noises that may be occurring.
Well, this seemed to help. Especially the routine of it.
Good Luck!
 

nvts

Active Member
I've gotta go with MidWest Mom! This sounds a lot like my difficult child 1 - I'd head for the neuropsychologist and see if there are add'l diagnosis' here. Quite often other disabilities are "presenting" as ADHD/ODD, but in reality, it's something causing that type of reaction in the child.

Outgrow? I'm not seeing it in mine BUT: as he's getting older, we've fiddled with the medications, and the therapy that he's been in, we're seeing a change. He's becoming more willing to "see" other people's points, not as quick to flip out (we've only had 2 meltdowns in the last 2 mos.) and more accepting of disappointment. Outgrowing it? No. It's purely maturity and CONSTANT reinforcement of the tools that we have been trying to pound into his head since what seems like birth!

Just my 2 cents!

Beth
 
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