good day gone bad

[sjexpress]

Today I really felt bad for my difficult child. Since I have allowed myself to realize that most of his behaviors are beyond his control ( and I have not yet been able to find someone to help us yet) I don't get as angry at him but more sad for him at times.
He had a double header baseball game and in the first game, he played the game of his life..hit 2 homeruns, made all his plays in the field, etc... His teammates, coaches and parents were all over him with congrats and praise.
Then the second game started. difficult child's first at bat he struck out looking and was immediately angry because he said the umpire made a bad call but we got past that.( it was a bad call by the ump but you have to deal with it regardless) At his next at bat, he hit a single and ran to 2nd base on an error. Unfortunately, the 3rd base coach waved him to come to 3rd then yelled no, go back but it was too late and difficult child was tagged out. Well, difficult child just lost it. He was so angry at the umps call (this one was questionable but again- deal with it as it is part of the game) that back in the dugout difficult child was in tears going on and on very loudly that the ump was wrong, etc.. He walked over to me carrying on and no matter what I said, I couldn't get him to drop it. Them some kids on the team started yelling to get over it and difficult child got even madder and shoved one of the other kids while yelling shut up over and over!
One of the coaches had to seperate them and difficult child came back to me yelling he quits, wants to go home, hates playing, etc.. It took a long time for me to calm his down but he finally got it together and went back to the dugout. Of course he was benched by the coach the rest of the game and I wouldn't be surprised he gets some bench time next game too. Those are the consequences and I totally agree.
difficult child was totally calm by the end of the game and shook hands with the other team and his own as if nothing happened. It was rough though. Thru the whole ordeal I felt every parent looking at me and I know the kids were laughing at difficult child.
THis is what happens when difficult child is intense about something and things don't go his way. He totally loses control even though we plan and speak about how to handle himself in cases like this even before the game starts but difficult child just can't gain that control of himself.
Are there really medications that might be able to help with this? Like I have posted before, we've been to 2 psychologist and anger management classes with no effect. I am trying to find a child psychiatrist but our local hospital that has a children's psychiatric dept. says a Dr. will do the evaluation but since they are a teaching hospital, difficult child would be followed up by residents or fellows who are still in training. I don't like the idea of that. I need someone full of experience!
Anyway, thanks for listening!

Jan

 

[Farmwife]

I'm being seen at a teaching hospital for reasons other than mental health. The doctor professor is one of a few in his field with his level of expertise or ability to do the things he does. Though I am exposed to students, in my case I see it as tolerable because the teaching staff (groups of prfessors working in unison over the department) have so much knowledge and experience that I couldn't find with just a regular doctor in private practice. These students are learning under and being watched closely by some of the best doctors in the country. That is reasuring to me.

I totally understand your hesitation though. This is your child and it requires a lot of faith and trust in the care providers.

 

[DazedandConfused]

I had about 200 parents and children watch eight year old daughter have a meltdown on a soccer practice field. I don't even remember what it was about, but do I ever remember the stares because it got to the point where everyone just stopped to look.

Yes, there are medications that can help. BUT, only after an thorough evaluation by the appropriate professional (s). I would also highly recommend an evaluation by a Neuropyschologist. This is a psychologist who has specialty in the functioning of the brain. A thorough testing by one takes a least a couple of days. There should be a few of them at a teaching hospital.

This is a link to The Parent Report: http://www.conductdisorders.com/forum/f7/parent-input-multi-disciplinary-evaluation-10/

All questions are explained you can cut and paste the questions into a word doctor, etc., and then fill in with information pertaining to your son. Take it with you to all evaluations. It will help ground and focus you. It's also useful when dealing with school issues.

The trick is getting the proper diagnoses along with the proper medications and the proper dosages. I have to be honest, not all psychiatrists are good at it. I honestly think going to a teaching hospital with those in training could be an advantage too. They should be up on the latest information. It can be very difficult to keep up the constant change for psychiatrists in practice.

 

[confuzzled]

i too use a teaching hospital with my difficult child 1 for a different sub-specialty, and never ONCE was a resident or a student allowed to do anything but observe. not once.

and its the number one childrens (teaching) hospital in the world.

impatient stays are handled a bit differently (and i lived there for a good part of 2008 so i saw the good, the bad and the ugly), and residents are the primary day to day caregivers, but ALL are closely overseen.

but at no point are random residents (or students) making more serious decisions alone than whether to write a script for benadryl or tylenol.

but take it from me (can you tell i can tell you stor-ies!)....residents/fellows are your friend. get on their good side and you'd be amazed what they can facilitate. it by far beats the rant of a parent, no matter how medically sound it may be. they are the day in, day out liason to the people who really can help. learn to use them.

so i'd want to clarify exactly what following up with a resident means....if it means they would be in charge of writing a renewal medication rx with little or no changes, thats one thing...if it means they somehow have the ability to change treatment plans or re-diagnosis on their own, i'd be concerned. (i'd also fall over, lol!). so please investigate exactly what your local teaching hospital can offer your child....you may be very pleasantly surprised.

 

[susiestar]

It is so hard to watch when our kids lose it around others. Knowing they will be teased, possibly for quite a long time, about behavior that they truly are incapable of controlling, is very very painful. I am so sorry that the second game went so badly.

I hope that you and difficult child and the family can work on not letting the meltdown ruin the memory of the triumphs of the first game. It is a hard thing to do, but being able to put the meltdown behind you and enjoy the rest of the day and the memory of the good things before the upset is very important. Otherwise it is really easy to let a meltdown that lasts an hour or less ruin and entire day. That adds up to weeks, months, even years. For quite a while I had to push my husband to work with me to write down positive things that happened every day so that we could both SEE that difficult child's problems were not "ruining" all of our lives. They caused a lot of stress, anger, and unhappiness, even fear, without a doubt. But if you lose sight of the good things you can lose sight of your goals and the stress will destroy every aspect of your life.

Getting a complete, thorough evaluation is the key to helping your son. You need to have testing done by either a neuropsychologist (therapist with special training in how the brain and behavior interact) or by a multi-disciplinary team. Many here feel that the neuropsychologist does better testing. There is a lot of variation, of course, but either way the testing should involve several sessions adding up to about 10-12 hours of time. You can find the experts at major university or children's hospitals.

We have had other members from your area, so maybe someone can PM the names of docs who helped them. We do not say names of docs/phosps etc... on the open forums.

Teaching hospitals can offer great services. Every resident/intern/whatever has their work reviewed and supervised by a teacher. You may actually get MORE help because they collaborate and you are not stuck with one person's perceptions and ideas. We worked with a major children's hospital when we lived in OH and overall had EXCELLENT service and results. We did get a couple of boneheads but we saw far more idiots in private practice or smaller hospitals. When we encountered someone who suggested or prescribed something that made no sense at the teaching hospital we could speak to someone who supervised them and figure out a plan of action. Docs at teaching hospitals are also much more likely to be up on the latest research. Private practice docs are more likely to be too busy to follow the latest research and to depend on info from pharmaceutical companies for their continuing education. The info presented by pharm co's is often very skewed in favor of whatever products are making the biggest profits for them.

One thing I really LIKE about teaching hospitals is that the docs are willing to share the reasons behind their suggestions far more than some other docs are. They are accustomed to explaining the why behind the diagnosis or rx or suggestion. They also are more willing to go back and correct mistakes, esp in things like the family history. Our history, like that of most difficult children, is quite complex. It is rare to not have several rather big misperceptions over things that have happened and what we have done to treat them. With docs who do not teach I find that IF they are willing to acknowledge the mistake they correct it on paper but not in their minds. They get stuck on what they remember from the initial interview and ignore or forget the correction, even if it makes a BIG difference in treatment. One doctor SWEARS that during a restraint I caused nerve damage in Wiz' left hand and that Wiz has had a LOT of therapy and medication to treat it. The reality is that Wiz caused nerve damage in MY left hand and I have had the treatment/medication for it. We stopped seeing him when he kept rx'ing phys therapy and braces for Wiz' left hand. I even showed him the tests from MY docs about the damage. So he decided we BOTH had damaged hands and that I am in denial about having caused long term harm to my child. The docs in the teaching hospitals seem more willing to accept that they make errors and to correct them. It is one reason I LIKE teaching hospitals. (And in a teaching hospital there are extra eyes on things so if a mistake is made there is a MUCH greater chance that someone will admit it, at least to you. Having had a HUGE error made in a critical area of my son's care by a doctor at a small hospital, I am well aware that you often are lucky to even LEARN about the error unless there are too many people around for it to be swept under the rug.)

There is usually a long waiting list to see a specialist. Three months is rather standard, at least in each hospital/practice we have encountered, and sometimes it takes even longer. If at all possible, get the wheels rolling to get an appointment with whomever you can find. If you find a doctor you like better later, you can always make an appointment with them and cancel the other one. Or see both to see which one you prefer.

I hope this makes sense.

One idea to maybe help your son is to have a code word. For some reason there are words that make my kids crack up. The words have varied through the years, but they are ones the kids think sound funny. Like "smock". When Wiz was on the edge of losing it, or had gone over the edge in public, we would have a code word that would remind him that he was getting out of control. It took quite a while, but he was able to learn to pull it together long enough to go to a restroom, parking lot, or other private place. It saved him from a fair amount of embarrassment and teasing.

We also learned that if he had any kind of extended physical activity he NEEDED some type of snack that was high in protein. Even if we were going to the store after school I would make sure to bring a high protein snack for him. Sometimes I would even give him a boost of protein at half time in his soccer games. It really helped him stay in control and be able to stop long enough to go somewhere private if he did lose it. I LOVED having those balance bars and zone bars around. Certain flavors had the sweetness he craved and enough protein to really help him. It took a lot of label reading because MANY of the "health" bars have more carbs and sugars than candy bars. We have the best luck with the Balance brand and the Zone brand. I also used the Zone diet books to help figure out balanced snacks that he liked.

Sorry this is so long. I didn't realize I had written a book, LOL!

One last thing- Have you read "What Your Explosive child is Trying to Tell You" by Dr. Riley? It might be helpful, though you do seem to have a good handle on difficult child's meltdowns. I was surprised at how insightful and helpful it was.

 

[BusynMember]

I prefer neuropsychologist evaluations to psychiatrists. They are very intensive and in my opinion far more accurate. They do 6-10 hours of actual testing. psychistriatrists just seem to guess and pull things out of the sky. Often they go with the flavor of the month.

As for teaching hospitals, I love them and think their residents are better then most non-university hospital regular psychiatrists. They always work directly with the Head psychiatrist and never make decisions alone. I was in a teaching hospital for a psychiatric problem once and it was fantastic. I was also in two others, not as good. Not by a long shot. University hospitals tend to attract the brightest and the best doctors in all areas. This was one of the few psychiatrists I've seen that I felt was awesome. His resident was better too than almost anyone else I've ever seen.

Many psychiatrists just are not up to snuff since psychiatry is not an exact science nor is medication therapy. As a person who has been going to psychiatrists since I was 24 (I am 56 now), I can tell you I've run into many more bad ones than any who helped me. I liked the Neuropsychs better. I feel the same way about my son, who has autistic spectrum disorder. A psychiatrist misdiagnosed him and heavily medicated him for three years. My son has been off medications now since he was 11 (going on six years) and he is better, not worse. He did not have bipolar, which the psychiatrist INSISTED he was.

Is there any psychiatric problems on the father's side of the family? I don't know if your hub is his genetic father, but his genetic father is the one who would have passed something along to the child...after all they are 50% of their biological mother and father. So even if the child never meets his father, he is still influenced by him. Substance abuse is also a red flag for mental health issues.

I don't blame you for going slow with medication (wish I had). I do think you should try a neuropsychologist first. I just know so many psychiatrists who have messed up that I am leery of them all. I'd feel better if there would blood tests for childhood disorders. At least NeuroPsychs look for neurological disorders and learning disabilities as well as psychiatric disorders. They in my opinion give one a clearer, broader picture of what is going on. JMO You can find them at university hospitals and children's hospitals. Good luck, whatever you decide to do.

 

[Wiped Out]

I like the idea of both a neuro-psychiatric and a child psychiatrist. We were really lucky that our psychiatrist and the neuro-psychiatric's offices were not only in the same office but right next to each other so they were able to easily consult with one another about difficult child.

I'm so glad difficult child had the good experience of the first game and so sorry the second one was just the opposite. Hugs.

 

[TerryJ2]

Wow, what a difficult game!
He sounds a lot like my son, who is Aspie, but my son is older and can keep it together until we get in the car.

I agree with-the others, that a neuropsychologist evaluation is the way to go. You will be able to go to a psychiatrist for medications, but very few psychiatrists do much diagnosis-ing any more. Our first psychiatrist just took the word of the psychologist who did the testing and she never questioned it. We went through various medications that were at best, a waste, and at worst, dangerous.

Right now we use clonidine for rages (I keep one in my purse and one in the car), but our new psychiatrist isn't sure about that. We use it like a PRN and hey, whatever works. The psychiatric doesn't have to live with-difficult child! It's used off-label, since it is primarily an adult blood pressue medication. I asked both psychs about Xanax and they gave me horrified looks and told me it is addictive. Oh well.
We also have difficult child on Imiprimene, which you have to start in small doses and work up to a certain blood level. That means visits to the dr for occasional blood draws, but it's no big deal. I've learned that having a difficult child means extra visits to doctors, teachers' mtngs, etc.
Oh, I almost forgot. We used Adderall for yrs, and it was like a miracle drug. But with-difficult child growing and weighing more, it was wearing off earlier, so we switched to Concerta.

Of course, none of this means you can just use the drugs and skip therapy. They simply allow your difficult child to settle down so he can absorb what is being said, and practice the new behaviors. The goal is to get off the medications as an adult. Sometimes that's possible, sometimes not.

Your son is a great ball player. Tell him to keep up the good work, and downplay the meltdown, in my humble opinion. You want to keep him on a team because not only is it good exercise, this is the best way for him to learn what teamwork is all about.
And I know all about unfair umps. That's part of the whole thing he's got to learn.

Best of luck!

 

[sjexpress]

Thank you for all your support and advice. I really appreciate the time you've taken to offer help. I do have a few questions though- when you say get a neuropsychologist. evaluation are you refering to a neuropsyhologist or neuropsychiatrist? I know they are 2 different things. Also, since many of your children are on medications and are still having difficulties, do you think the medications really help? Would their behaviors be even worse ummedicated?
Our week has been rough since last weekends baseball problems. Many tantrums because difficult child was not getting his way... he want what he wants the second he wants it or look out!He can't handle the word no at all! And all the while I feel the tension building, I am trying to discuss other options how we can work it out but difficult child is only focused on on exactly what he wants at that moment.
difficult child even had another meltdown at another baseball game last nite because the coach took him out as pitcher because he reached his pitch count and because difficult child was upset he wasn' t pitching well, he went to the position the coach sent him to but then sat on the field and cried into his hands. difficult child would not stand up and the game was held up a few minutes until the umpire said to get the player off the field or forfiet the game. husband had to go and physically remove difficult child from the field. It was awful. Again, difficult child could give us no answers later as to why he just wouldn't stand up but he shrugged his shoulders as usual. I can't get difficult child to speak about his feelings for anything. I felt terrible for difficult child because then the ride home he kept apologizing to us over and over and was then crying because he thinks he may get cut from the team. THe coach is aware of difficult child's issues but still, he has a team to run and responsibilities to the other kids too.
Am I allowed to post my e-mail address on this forum? Someone mentioned that others are from my area and may be able to recommend a psychiatric. for us. Again, thanks for all the help.

 

[Fran]

Anyone who excels has to be super focused. He sounds like an exceptionally good athlete with an emotional immaturity interfering with his social skills.
I keep thinking of McEnroe (tennis player) and tantrums in his 20's. No real friends because they are competitive to the max. It's part of what makes them good at what they do.
An evaluation by experienced medical personnal is a first step but you may have an exceptional kid who is going to excel and be emotionally immature.
Being hyper focused always leads to falling apart. It's part of the reason our kids can't hold it together after playing video games intensely for hours or
after an intense day at school, falling apart at home.
If he has a gift, you may want to be cautious about trying to even out his temperment.

 

[susiestar]

Email can only be given via private message, or PM. I am not sure if we still have active members in your area, but you can post a thread asking anyone who knows of help in your area to send you a PM about it. You must first make sure you go into your settings and activate private messages.

A neuropsychologist is a neuropsychologist.

There is a good chance your son is unable to put his feelings into words. It is very common with difficult children. The shrug when you ask him about them is not so much an unwillingness to talk to you as it is likely to be an INABILITY to talk to you. It is one of the things therapy is very helpful with.

in my opinion there are very very few of our kids who can be helped without both therapy and medications. SOME of the autistic/Aspergers kids who are very high functioning and not emotional can do it, but it is NOT the norm. Midwestmom's son is an exception, in my opinion. Of course it is a personal decision. with-o medications for adhd, depression and a total inability to sleep (which comes from my father's side of the family and has happened to at least one of us in each of 5 identifiable generations) there is NO way he could use the tools he has learned. with-o medications he is a walking disaster. For years it largely manifested as hyperness and severe rage. He was totally unable to register ANY praise directed at him. It only made an impact if he heard us praising him to someone else. We would even pretend to call someone to tell them what a great job he did. It took a LONG time, and a LOT of hard work from a whole lot of people to get to a point where he could turn things around. He now says he really appreciates all the work and discipline and medications and everything else we did with/for him. He hates the way he feels and acts when he is not medicated so he is very willing to take his medications. It took a LONG LONG time to get to that point, and the medications that are right for him now were not always right for him. WIth his brain chemistry there is very little chance he could survive with-o antidepressants. He would end up committing suicide. He says if he lowers the dose of any of the medications he is on the old feelings creep back in.

Not all of our kids feel that way, of course, and it took many medication trials and years of hard work to get to the right combo.

While neuropsychs CAN be as good as MidwestMom says, not all of them are. The ones we have encountered have done very very little testing and afterwards have been very reluctant to write reports or to commit any diagnosis to paper. I don't have the faith in them that MWM has, though many of us here prefer them to psychiatrists. Our developmental pediatrician led a team of various specialists that included psychometrists (people with special training in giving psychological tests and interpreting the data), a neuropsychologist, various psychologists with different specialties, a learning disabilities specialist, and he was certified as both a dev pediatrician and a child/adolescent psychiatrist. We were not dependent upon any one person's opinion, but rather on the opinions and expertise of a group of people. It gave us a very well reasoned diagnosis and a fairly clear starting place to begin to help him learn to cope with the world.

None of this is an exact science. To complicate matters further, as a child grows and matures the symptoms that he shows will change. It is one reason that the diagnosis can change so much as a child grows. Many of the diagnosis's have very similar symptoms so it is partly a guessing game as to what is really going on. Lots of times all that can happen is to treat the symptoms and help the child learn to cope.

medications should NEVER be the only thing that is used to help a child. medications help the child get to a point where they can control themselves and can learn to function in a healthy way. Right now your son is not able to control his emotions, or to change his focus from whatever he wants at the time. He probably CANNOT control these things, rather than being unwilling to do so. That is a HUGE difference. It really sounds as if he is miserable and at the mercy of his emotions and immaturity and impulsiveness. Unless something happens to help him get to a point where he isn't so stuck in his thinking he may NEVER be able to control himself. A LOT of the problems can be helped by medications, though they do NOT have to be permanent. Many of the areas of the brain that control judgement and maturity do not develop until they are out of their teens. This is in neurotypical people, or those with "normal" wiring in their brain. It is why so many teens act the way that they do. In their 20s the brain areas develop and they make better choices. Our kids, who do not have the "normal" brain wiring, are often about 1/3 less mature than their same age peers. So when my son was 12 years old he had the maturity level of a child about 8-9 years old. This goes with many many problems, including ADHD, Aspergers, Pervasive Developmental Disorder (PDD), bipolar, etc... Of course some kids are even further behind, but overall this tends to be about right. If you can remember that in development your son is about 7 years old, it may help you keep his behaviors in perspective. It does NOT mean that you stop expecting him to do his best, but it can help you keep your expectations in line with what he can actually do.

medications are a tough decision. Without them my son would probably not be here. Others have kids who do well off medications with intensive therapy and accommodations. I think most kids do best with a combination of different therapies, but every family must make these decisions for themselves.

 

[sjexpress]

If I see a neuropsychologist, can he prescribe medication if needed or will he then first have to send us with his findings to a psychiatrist who is an MD and can prescribe medications? I believe in the state i live in only those with MD degrees can give medications. Just asking because I want to make the appointment. with the right person. THanks again for all the input. I am finding this so helpful in trying to figure out what to do and also getting some relief that I am not alone in all this. I am the one falling apart lately because I am grieving for my poor ds who I feel so bad for.