DianeB

New Member
Hi. I'm new here. Son (difficult child - now 13) was diagnosed ADHD at age 6. I have known since his birth that he was different. I just thought it was the boy in him coming out.

He was on medications through 4th grade, when he started having a horrible 'let down period' at the end of the afternoon. In trying to switch medications, his pediatrician thought that difficult child was showing signs of ODD. He sent us to a psychologist or psychiatrist (not sure any more) for further diagnosis and medication review. The place did not help, and we ended up going off all medications because sons moods were better. He did ok in school, so we just watched him and hoped that maybe things would stay calm.

We did okay until this past school year. He hit puberty (yikes) and has been so hard to live with. I read your posts and cry, because while I WANT to have hope, I really don't know how much more of this I can take. If I can't stand to be around him, how can he stand himself?

His pediatrician has started the testing and is supposed to refer us to a new counseling center or whatever difficult child needs next. We go back in the next few weeks. He scored off the charts on the ADHD and ODD areas.

Any suggestions on how to get through the next few weeks would be greatly appreciated. Do I just need to breathe deep and have more patience? Is my being patient what makes him act out?

I can only get online at work, briefly, and while I'm glad to have found this site, I can't take the time to sit and read like I really want and need to do.

Thanks in advance for any suggestions.
 

BusynMember

Well-Known Member
I have no idea what is going on with your son. Can you give us a background and history? If not, we can't really give good input. I can ask a few questions that can help us help you. What is making him act out is most likely whatever disorder he has. It doesn't sound like he has been evaluated recently or consistently. He really should be. NOW...before you can't reel him in or help him.

1/Has he ever been evaluated by a neuropsychologist? Many of us feel they are the best diagnosticians and certainly the most thorough.

2/If the medications didn't help, there is a good chance he had an ADHD mimicker. This is common. Neither a pediatrician nor a regular therapist is really that hot at diagnosing. Refer to neuropsychologist above. So about your child's family tree--are there any psychiatric problems or substance abuse issues (now or in the past, even before he was born) on either side of the family tree? Even if you are a single parent and his father never raised him, heredity often rears it's ugly head. A child gets 50/50 from both sets of parents.

3/How was your son's early development? Did he talk on time or have speech delays or problems? Did he make good, strong eye contact both with you and with strangers? Did he enjoy cuddling? Was he all right in a crowd and good with his same-age peers (this applies to both as a toddler and now). Does he understand social norms? Is he capable of having long term, close friends? How does he do in school? Can he transition well from one activity or another? What causes a meltdown or rage?

4/Is there any chance he has started to experiment with drugs? My daughter began at age twelve. Right, twelve. I had no idea it was not that uncommon and no idea that drugs were causing her to suddenly change.

Welcome to the board :D but sorry you had to join it. :(
 

DDD

Well-Known Member
Welcome. Why not try the public library when you're not working? Even in our little community you can use the Internet for an hour at a time..and if nobody else signs in..you can stay on long enough to read. Good luck.
DDD
 

susiestar

Roll With It
Hi! and Welcome! I am so glad to meet you! You have found a true source of info, support and friendship. None of us are "professionals" so we learned about this the way you are - by getting thrown into the "pool" with no warning or floaties. Feel free to use us as a life preserver - I know the site saved my family, well, the ladies here did.

First I want to help clarify some names. The difference between a psychiatrist (psychiatrist) and all the other therapists (SW, psychologist, counsellor, etc... all called tdocs here) is that the psychiatrist is the one writing the prescriptions. Many times that is ALL a psychiatrist will do. I have had some that would not refer us to hospitals in times of crisis, and ones that emailed with me late into the evening to make sure we were OK. You probably need a combination of those people. Feel FREE to make appts with a new person if the old one isn't doing the job or makes you uncomfortable.

A neuropsychologist is a psychologist with extra training in how the brain impacts behavior. A GOOD one will do 10-12 hours of testing and then give a written report. Sadly some only do an hour or two of testing and the results are not nearly as helpful. One thing the neuropsychologist does that is very helpful is to give a list of concrete accomodations that can help your child at home, at school and even when you are out in public. Good neuropsychs typically do not do weekly therapy, at least that is my experience.

I am not 100% sure where others have located their neuropsychologists, but maybe they can pop in and tell you some places to look.

I strongly encourage you to get a referral to a child and adolescent psychiatrist (psychiatrist) as well as a neuropsychologist. Children show the problems we are dealing with differently than adults do, so it is important that the psychiatrist be certified in working with children and adolescents. You wouldn't take your Ferrari into the local Ford dealership would you?

Do whatever you can to find time to read and explore the site. It is well worth the time. You will learn that there is very little that you will go through that someone here hasn't been through similar and that others are also aware of ways to help. Even the really crazy stuff our kids do, the stuff that seems so "out there" that no one else would ever do. yup, someone will have been there done that and can help and give you a shoulder to cry on and an arm to pull yourself up.

Be nice to yourself, trust your instincts, and take time to relax when you can. I look forward to getting to know you better!
 

Marguerite

Active Member
Hi and welcome.

You sound like you've been through the wringer.

A couple of things we have learned that may help you -

1) ADHD medications can make a big difference but some kids have trouble with "rebound" where as the medications wear odff at the end of the day, it's as if all the problem behaviours that have been held in check all day, suddenly dup on you all at once. Nasty. A different medication may have been all that he needed, which makes me really angry if you got deflected down the ODD path. And it's not one particular medication that is at fault - difficult child 1 got rebound on ritalin (and his baby broter gets rebound on ritalin's long-acting big brother, Concerta) but neither boy gets rebound on dexamphetamine; but a friend of ours gets rebound on dexamphetamine and not ritalin.

2) ODD is in my opinion a real problem. Not because it's an untreatable disaster (as it has ben described) but because, in my opinion, there is a condition almost identical to ODD which actually has an environmental cause and responds well to a simple change in how you handle the child. Trouble is, too often parents are told, "Your child has ODD, it's untreatable with medications," and you feel like giving up. But when you have a child with a condition like ADHD, or bipolar, or autism, or any oneof a number of problems which include poor social skills, a short fuse, a high frustration level, then you have the stage set for a kid who will rapidly become oppositional in response to strict controlling-type of discipline. The best way to manage a kid like this is to go on treating the underlying condition and NOT get sidetracked into treating "ODD". An analogy - you are told you have diabetes, your doctor treats you for diabetes by giving you medication. Then another doctor tells you, "Your main problem is too high a blood sugar level," and implies that therefore you do not have diabetes. Which is crazy - if you stop treating your diabetes, the blood sugar level problems will become worse.

Whether ODD does really exist, I am not arguing. But I have seen too often a child labelled as ODD and untreatable, who actually is VERY treatable (and therefore doesn't have "real" ODD? although it seems indistinguishable) by simply changing discipline approaches and also managing the underlying condition more effectively.

A book we suggest here (and which turned around the ODD-type problems we were having) is "The Explosive Child" by Ross Greene. It's cheaper than a psychiatrist and probably more effective. Although I'm not saying, dump all therapy and just follow te book! But if nothing else has helped and you're at the end of your wits, give it a try. You've got nothing left to lose.

To get a bit of a preview, read the stickies in Early Childhood where there is some discussion on how to adapt the book to younger children. It can still give you an idea of how to go.

3) Adolescent hormones are ghastly, in the effect they have on our problem kids. But it needn't be all horror, there are things that can help.

Stick around, talk to other parents, read up on other threads and you will get a lot of useful information. Feel free to dump on us if you're stuck or at screaming point, we've all been there and can help.

Marg
 

daralex

Clinging onto my sanity
Hi and glad you found the group. There are some incredibly supportive people here!! You learn to do whatever you have to to get through. Some days it's a bubble bath, other days are a scream into a pillow (or tunnel while your driving!!)

I don't think it gets any easier - you just get better at battle

But mostly it has been the support of everyone here that gets me though. You'll find a way - we always seem to. Just remember to take time for yourself in what ever form that takes. You need to rejuvenate once in a while.
 

DianeB

New Member
Thank you for all your replies. Son returns to the pediatrician this week, and I will be requesting referrals.

There are a boatload of issues on both sides of the family. I have two functioning autistic brothers. He does not exhibit their behaviors, but its always in the back of my mind. I watched him like a hawk as a child.

My husband's family has issues as well. Both diagnosed and undiagnosed disorders that scare the stuffing out of me. One nephew has been diagnosed with bi-polar, anxiety and other things... but, due to her own issues, I no longer speak to his mother - so I can't get any further information. I won't go into the undiagnosed disorders, because I'm not qualified. But I DO know what I see, and quite frankly, it scares me.

My son has ADHD. He did wonderfully on Concerta, except for the end of day meltdowns. His school could not praise him enough for his turnaround while on medication. When he functioned okay after going off medications (5th and 6th grade) we were hoping that he had possibly outgrown it.

He has obvious anxiety issues. Hates to meet new people. He has a lot of friends, but he will claim that they do not consider him a "friend", that they just know him. He has a few close friends, and he has kept them for all of elementary school. His 5th grade teacher told me he was the class clown, the most popular boy in the class, and nothing went on in that class until my son gave his say-so. THAT does not sound like the son I know at all. What I think it means is that he needed to be in control.

In middles school he has lost ALL control of his surroundings. He despises change, has since birth. We did everything we could to prepare him for middle school. He even went to a summer program so that he learned the school, got his locker and got to know the principal and some of the teachers before the school year started. I was seriously worried about his changing classes, classmates and teachers every 40 minutes, and I was right. He spiraled out of control, and we are now trying to pick up the pieces.

I so appreciate this site, and all of your information and do apologize for rambling...at this point I don't know what is relevant. I look forward to reading and learning much more.

I am counting down to his next appointment.
 

DianeB

New Member
Before I forget - He is extremely smart, yet fails all his classes. He basically taught himself how to read while a toddler. He knew every road sign and what it meant, and knew how to get anywhere we had been before, before I realized he was even paying attention.

He plays sports very well, but suffers from what we call "performance anxiety". If he's not the best, its not worth it for him. Every sport is a struggle... Everything in life is on HIS terms... has been that way since birth.
 

Marguerite

Active Member
I would strongly advise you get Pervasive Developmental Disorder (PDD) in some form put high on the list of things to be considered. Having other familymembers with it is a red flag.

Every person is different, including every autistic person. I have several and they are each very different to one another. The "very smart but failnig all classes" also fits. Oh boy, does it fit! And the oppositional behaviour, the anxiety, the tantrums... what you describe with the early reading - that sounds like hyperlexia. As far asIcandetermine (and there is still some disupte about tis) it seems to be a subset of high-functioning autism possibly overlapping into Asperger's and maybe even normality (on the edge). Hyperlexia tends to be early reading but without the associated level of comprehension. They may learn the conrete stuff but will often be able to read at a level greater than they can fully comprehend.

For example - difficult child 3 could pick up a book and read aloud, while he was still mostly non-verbal. He could recognise words and had by this stageworked out most of the basic rules of pronounciation, but often didn't know what the words meant. He still will use a new word as if he has learned it from reading, not from hearing it.
To boost his comprehension we worked backwards - we would write out a word to show him how to pronounce it and also draw a picture to show him what it meant.

Your son sounds a great deal like my difficult child 3.

I hope you can get osme answers for him, once you understandwhat is going on for him you may find a drastic improvement.

Marg
 
N

Nomad

Guest
Very briefly...I would have your son tested and look for things like bipolar disorder and depression.

I would read up on both of these issues.

Depression in teen boys is relatively common and very hard to diagnosis. It manifests in complicated ways since depression doesn't always show up in typical ways with boys. For example, boys might seem hyper, clownish or angry.

Do you have any good male family friends that might be able to help out? Someone who could take your son to really cool movies or something like that? (Make sure he is acting appropriately at the time though...don't reward for inappropriate behavior).

Does your son have any hobbies you could help him explore? If he could get involved with an interest this would be very helpful. See if there is any activity at school that interests him. What is he good at? This would be a great self esteem booster.

If he is showing issues involving rages...I would explore some sort of stablizing medication. This could be an indication of bipolar illness. The Bipolar Child (book) is wonderful for this topic.

Counseling therapy might be very beneficial. Try to find a therapist that your son can relate to.

Consider periodic family therapy...this is in conjunction with your son's therapy. Perhaps you can do this every other session or you can go once a month. You can do it with the same therapist or another one. Talk it over with your son's therapist...but try not to let this go. Family therapy would be a highly effective add-on, I believe. The ODD is certainly an indication of a need here.

Also, you might want to ask the doctor about nutrition. Or possibly consult with a nutritionist. There are some natural books re: ADD.
One supplement said to help with ADD and Bipolar Disorder is Fish Oil or Omega 3.

I would be patient and make sure you are good to yourself! I would set appropriate boundaries within the home. In other words, don't be a militant mom with many, many rules, but don't be a wishy washy mom who is your child's "friend." He needs to know that you (or you and your spouse) are in charge. He is the child. You are the parent. Let him know that you have sought medical assistance from professionals and you expect him to be cooperative and you know that there will be peace and happiness in the home. Bottom line...you can do certain things to help. You can improve your parenting skills. Surely, this will help. As parents, we are obliged to do our part. This is only 1/2 the equation. Your child has to also do his part. This is something he needs to learn. It is a two way street.
 
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BusynMember

Well-Known Member
With autism in the family, he has some red flags for Aspergers. I'd want to see a neuropsychologist. Autistic kids can be very different, depending on where they are on the spectrum. It can't hurt to get an evaluation. I wish I'd seen a neuropsychologist before a psychiatarist. My son was on a slew of bipolar medications before we found out he doesn't even have bipolar. The two (Aspergers/bipolar) can mimic one another, but Aspergers is more intervention-oriented than medication oriented.
I have bipolar. My son is a high functioning kid on the autism spectrum...Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers. in my opinion your son sounds more like my son that me as a kid. And I had BiPolar (BP) as a kid too.
 

TerryJ2

Well-Known Member
Welcome, Diane.
You've got your hands full.
Definitely, get neuropsychologist testing. Especially with-both sides of the family having chemical and neurological issues, you pretty much know what you see in your son.
Don't worry if you can't get info from one side of the family. They may not have the right info anyway.
Since your son did well on the Concerta, I would talk to the pediatrician about putting him back on something asap, that won't wear off at the end of the day. One thing we did (after the psychiatric hospital) was have difficult child on Adderall first thing in the a.m., and clonidine at night. It really took the edge off. We saw him smile at us for the first time in months.
Have you tried any nutritional supplements? Does he have allergies? People with-Asperger's often have gluten allergies or celiac disease. You can look it up on line.

Tell the pediatrician that s/he is the main medication prescriber (at this point, the only one) and you need help NOW.
Later, when you get a psychiatrist, you will be trialing different medications and it will be a rough road, but it will be worth it. You're just starting out and it's very hard.

Does your son respond well to therapy? Like, giving him calming thoughts he can use b4 class or a game so he doesn't have an anxiety attack?

Boy, he sure sounds like my son.
 

graceupongrace

New Member
Diane,

Sorry you're having such a tough time. A difficult child at this age is like a typical teen (typical teen) x 10!

The others have given you plenty of good advice. I'll just add that my son also was off the charts for ADHD. We switched from Concerta to Vyvanse a couple of years ago. It lasts much longer, and difficult child said he feels better on Vyvanse than Concerta. He still has plenty of difficulties. I want to scream a lot of the time too. But the medication change has made a difference, especially in helping him to stay focused during the whole school day.
Both the symptoms and the diagnosis can evolve through adolesence. It's a journey.

(((Hugs.)))
 

busywend

Well-Known Member
Welcome! Glad you found us!

I would try something other than Concerta as well. My difficult child tried Ritalin, Concerta and Straterra before we found that Adderall did work - very well. The school phone calls stopped that day!
 

DianeB

New Member
Another thought - My difficult child originally was prescribed Adderall at 6 yrs of age. About 6 months in I was walking him to school one day. He stepped off the curb without checking for cars. I, of course, grabbed his arm and pulled him back. There was a car coming. His response? "That car can't hurt me." As I asked him more questions, I became very afraid for him. His explanation was that his brain told him he can stop a car. His brain told him he could do anything. When I asked if his brain talked to him often, he said yes.

Well, difficult child's hysterical mother threw the adderall away and had him back to the doctor that day. We stopped all medications for the summer, and once it came time to go back to school, Concerta did the trick. I watched him like a hawk, and it was a wonder drug for him for several years.

I wondered then, and obviously now, if his hearing his brain talk to him was a precursor of things to come? Should I have pressed harder when it happened?

For the record - it has never happened again, and he has been drug free for 3 years.

I think his doctor and I are going to have a very long visit.
 

BusynMember

Well-Known Member
He may have been hallucinating because of the Adderrall. My son was awful on it--we threw it out. I think before you go medication hunting it's best to get that neuropsychologist evaluation. It may be an ADHD mimicker, in which case a stimulant could make him worse in the long run rather than better. It's a good idea in my opinion to go slow with the diagnosis. and medications. I think I went too fast with my son. We accepted the ADHD diagnosis. at once and put him on medications at age three. ADHD isn't his main diagnosis. I wish I could go back in time and slow it all down--get several opinions on what to do, research, and decide. If your son has something other than ADHD, stims can make him worse--after all, it's speed. My daughter, who abused drugs, used to get high with her friends on ADHD medications, with Adderrall being the drug of choice ($10 a pill). They would crush them in pillcrushers and snort them either alone or with other drugs. Be cautious and have your child re-evaluated before playing with medications. These are heavy duty medications. I know because I've tried most of them--some made me a lot worse rather than better.
 

TerryJ2

Well-Known Member
Gosh, it was so many yrs ago ... it could have been the Adderall, or a foreshadowing of bipolar, or all sorts of things ... was that the only occasion he said that?

Also, I don't know how close Adderall and Concerta are, chemically. Others here will join in.

There was a discussion here about a yr ago about kids who think they are superhuman, and what is developmentally normal and what is not. I can't remember what it was called. If one of us can remember, it would be an interesting thread for you to read.
 

Marguerite

Active Member
You have to be so very careful in hhow you question a Pervasive Developmental Disorder (PDD) kid, too. Of course we don't know if he IS a Pervasive Developmental Disorder (PDD) kid, but it sounds sufficiently similar, that you need to be very wary of the literal mind and the leading question.

An example - Wendy Lawson, who has written a book, "Life Behind Glass", was about 19 when a specialist asked her, "Do you her voices?"
She replied, "Of course I do! Doesn't everybody?"
On the basis of that she was incarcerated in a psychiatric hospital for some years.

She was finally diagnosed as NOT schizophrenic after all, but Asperger's. She says, "He asked a stupid quesiton. Ofcourse we hear voices; you don't SEE voices, do you?"

I've experienced the same literal-mindedness in my kids, even when you would tinnk they would be old enough to 'know' how to respond to colloqualisms. In difficult child 1, tis literal-mindedness led his therapists astray also. He was in the middle of an assessment, they gave him pen and paper and said, "We want to see how well you can write. write something for us. It can be anything - a story would be good. We just want to see how you write."

difficult child 1 thought he was being assessed on his handwriting, so wrote verbatim the chapter of the book he had just been reading (photographic memory). The psychologist said, "He is capable of writing a lovely story, well-written with few crossings-out or pauses. He's clearly capable of imaginative construction at a very high level."
On the basis of this, he was diganosed as definitely NOT Asperger's.

I also was impressed - I didn't realise until later what had happened. When I did, I rang them to tell them. I would have thought his literal interpretation of te question plus the information that the piece of writing was NOT original would have revised te diagnosis. It did not - they did not want to revisit anything (an overloaded clinic, they had made their pronouncement, it was too much trouble to even overturn it pending a repeat check).

WHat you report could have been hallucinations. Or it could have been a kid trying to describe how thoughts sound to him. I remember trying to analyse the sound of my own thoughts when I was younger. I even talked about it with my mother - if she had been at all informed of things like schizophrenia or bipolar it would have terrified her! But I distinctly remember trying to work out exactly how my inner voice sounded, and what the difference was between it and my 'outer' voice.
Yes, I suspect there are Aspie traits in me also, except that I CAN write, I have always had a very creative and vivid imagination. But then - it does present very differently in females! I'm also a scientist and my mind just works in that analytical way. It always has and it was very obvious when I was very young. I also have memories that are very vivid that go waaaay back, I'm finding those memories very enlightening now especially WRT the kids.

So go gently. If things are OK now, then it sounds like medications are a major suspect.

I'm glad he's doing well on Concerta. My boys can't take it, but they do well on dexamphetamine (in SR form).

Marg
 
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