Very Concerned

[IT1967]

Several months ago, after trying my 10 y.o. daughter (difficult child 1) on Prozac, it was a disaster. Her meltdowns, which were bad, got out of control at home and school. Took her off the Prozac and they didn't stop. Now after having her heavily medicated on Risperdal, Concerta and now Zoloft, she's doing a lot better *knock on wood - poo poo poo*. My 8 y.o. son (difficult child 2) had been doing fair on Intuniv and Concerta, but the anxiety and ODD were still not under control. So, we tried him on Zoloft and it was a disaster. Huge meltdowns got out of control. He had been able to keep it together at school before starting the Zoloft, but after the Zoloft was started, he's had 2 horrible weeks at home and school, and it has been a complete NIGHTMARE with-his meltdowns and out of control irrational behavior. I completely stopped the Zoloft as of Monday (weaned him off - he had only been on the Zoloft a few weeks and most of the time had been a low dose). We are 5 days off the medication, and it's been just as hideous at home and school. How the heck long does it take for this **** to get out of his system? Can it permanently mess up your brain? My daughter did worse on Prozac (although she is doing well on the Zoloft, thank goodness), and the increased agitation continued for a month after until we started her on the Risperdal. I'm petrified the same thing is going to happen to my son - that he's going to stay at this horrible place even though he's off the medicine. Could it trigger something? The medicine should be out of his system by now, no? I'm devastated. I finally was starting to feel like maybe I could relax for 2 seconds with-o worrying what was going to happen next with-my daughter, and now this. I'm just crushed right now. And I'm not dealing with-it that great to be honest.

 

[TeDo]

I hatae the medication "merry-go-round". My difficult child 1 did HORRIBLE on the Prozac and also on Risperdal. They caused HUGE amounts of aggression. The Prozac took a good month to get completely out of his system and the Risperdal took 6-8 weeks. He was tried on Zoloft also and that gave him nasty migraines so we stopped after only a few days. I'm not sure what the answer is for you. To be honest, getting the right diagnosis AND the right medications (finally) have made a huge difference. I really wonder if you have the right diagnosis's. medications can make many symptoms sooooo much worse.

{{{{HUGS}}}} I DO know what you're feeling right now. I have so been there done that.

 

[BusynMember]

Prozac was poison in my house for three of us. Zoloft made me so sick I ended up in the hospital after two weeks. It does take a while to get back to normal because each psychotropic drug changes the brain chemistry of each person. Even when the drug is out of your system, your brain chemistry may still be out of whack for a while.

I am very sensitive to medications and had many medication reactions. It took a while, but I always eventually got the bad effects out of my system. But it never happened overnight. I have an ironclad rule...I will take and give my children up to two psychotrophic medications at one time. No more. I think too many really screws you up more than it helps, and I've been on too many and know how horrible it feels. Don't let any psychiatrist talk you into overmedicating your child.

Question: If your son has anxiety, why the Concerta? That is only going to make him more nervous. Sometimes I just loathe doctors. I used to wonder if they just plucked a medicine out the air and prescribed it to see if it worked and I felt like a guinea pig!

One last question: After looking at your list of diagnosis. for your kids, wondering if they were ever tested for Asperger's Syndrome. Who diagnosed them? Many of us here kind of think ODD is a wasted diagnosis...not very helpful...doesn't explain WHY the child is defiant.

 

[StressedM0mma]

Yuck I hate the medication merry go round as well. difficult child started on Celexa, then they felt she needed to switch, and put her on Zoloft. When her depression worsened, they kept upping the dose. (Even though she was telling them something wasn't right.) They finally weaned her off of that. Put her on Wellbutrin. HUGE mistake.! She was raging something terrible. She ended up in phos, and she finally was able to convince them to put her back on Celexa. It is not fun trying to find the right combination. Good luck.

 

[IT1967]

Well, it's comforting to hear that it will work its way out of his system, god willing. I do think both of my kids might have Asperger's. I actually think my difficult child 1 has NonVerbal Learning Disorder (NVLD). She fits those symptoms so closely. My husband, counsellor and psychiatrist all think I'm wrong. I have the name of a neuropsychologist who comes highly recommended. But I don't have the $2K right now to go further. Maybe I'd push for it, but with-my husband so non-believing, I'm just not up for pushing for it right now. I still always come back to the same question - so, even if the diagnosis is Asperger's or NonVerbal Learning Disorder (NVLD) or whatever on the spectrum, will the medications being rx'ed change?

 

[IT1967]

Oh, and Midwest Mom, difficult child 2's ADHD is pretty bad (inattentive). We tried Focalin, and one other stimulant that were horrible for him. The Concerta seemed to help some with-o increasing the agitation. The counsellor thinks maybe once the Zoloft is out of this system, we should increase the Concerta (of course only if psychiatrist thinks so), but now I'm leery of what I should do next. I HATE this nightmare.

We have difficult child 1's yearly checkup in a couple weeks. I'm thinking of asking for a referral to a neurologist to rule out some kind of brain thing. When he goes into these fits, it's like he's possessed and to me, seems like some bizarre brain glitch he has no control over.

 

[paperplate]

Whenever somone says Prozac, I swear I have flashbacks. My son absolutely LOST it on that stuff. We ended up in the ER psychiatric evaluation. Diazapam made him cry uncontrollably, Depakote made him vomit, Lamictol gave him a rash on his chest, face, inside his mouth, throat etc... Trileptol made him forget about 3 years of memories....I HATE the drugs that they give these kids. It's a nightmare. I'm nervous right now, because today I'm supposed to start him on a Stimulant to see if that helps an Autism Spectrum Disorders (ASD) & Epileptic kid control his impulses...YEAH RIGHT! Stimming is NOT an the same thing and Rage after a seizure? I must be nuts to even attempt a stimulant. I'm a nervous wreck. DS13 is not hyper in any way, actually, he barely says anything at all. But it's like, the docs seriously think they KNOW EVERYTHING and so far, they've been wrong about everything. I also have concerns about feeding a stimulant to an electricly charged brain... Don't know why I just wrote a book, but just wanted to say, you're not alone. I sincerely hope you find the right medications. It's like a roller coaster, just waiting for the next dip.

 

[DDD]

Caring supportive hugs coming to all of you on the Rx merry-go-round. been there done that and so glad not to rewalk that walk. I think that's one reason that I advocate for stimulants. You can just stop giving them if there is a scarey side effect and within 24 hrs (often less) the system is back to normal (or abnormal, sigh). I've also never known anyone who had a problem with Tenex except those who did not properly titrate up and also down when changing medications.

It is frightening and I'm sorry you're in the midst of it. on the other hand keep your eye on the goal. Most of us have ended up with a doable combination that has made life better for our difficult child's. DDD

 

[whatamess]

Have environmental demands been lowered considerably until some emotional stability is seen?

 

[BusynMember]

Well, it's comforting to hear that it will work its way out of his system, god willing. I do think both of my kids might have Asperger's. I actually think my difficult child 1 has NonVerbal Learning Disorder (NVLD). She fits those symptoms so closely. My husband, counsellor and psychiatrist all think I'm wrong. I have the name of a neuropsychologist who comes highly recommended. But I don't have the $2K right now to go further. Maybe I'd push for it, but with-my husband so non-believing, I'm just not up for pushing for it right now. I still always come back to the same question - so, even if the diagnosis is Asperger's or NonVerbal Learning Disorder (NVLD) or whatever on the spectrum, will the medications being rx'ed change?

The treatment should change completely and kids on the spectrum usually don't do well on so many medications. medications can't fix Autism Spectrum Disorders (ASD). Some need it, especially when younger, for frustration or rages, but it should not be the main focus of treatment. Sometimes they are needed if there is a co-morbid problem, such as bipolar, but be careful. Aspergers can look like mental disorders, but it's not. Psychiatrists (many) don't really "get" Autism Spectrum Disorders (ASD). It's not really their field.

My son was medication free when he really started making gains. Aspergers is not a mental illness. It is a neurological difference. Many do very poorly on ADHD medication and also many are uber-sensitive to all medications. My son is one of those. He hates medications now (he's nineteen) and is doing fine without them. Interventions are best for anything on the spectrum, not psychological therapy. Many also require Occupational Therapist (OT), PT and social skills assistance. They need to learn to understand our world better and this requires teaching them about it...most are bright and do catch on, more or less. Yours are gifted...great chance at a good life.

The rages usually wane as they get older, if not disappear. Do you have an autism society near you? You can join a parent group and get more information and do some things yourself, if necessary.


I have a severe NonVerbal Learning Disorder (NVLD), but not Aspergers, although they are closely related and often co-exist. Kids with NonVerbal Learning Disorder (NVLD) (and adults) can usually verbalize really well, but not perform up to their level of verbalization. In my case, my NonVerbal Learning Disorder (NVLD) is quite severe...verbal IQ is in the superior range and performance IQ is 85. Therefore, I could always talk my way into getting a job and they thought I'd be brilliant.

But then, even when faced with factory work, I could not figure out the simple task of how to do the task assigned to me. Do your children read and speak in an advanced way, but tend to be unable to do things other kids do every day? Like is it hard for them to figure out how to fold their laundry neatly? (I know this sounds silly, but I still have trouble folding my laundry so that it looks as nice as most other people's laundry...lol). Sometimes I just give up and throw it into a basket and have kids help me figure out how to tuck the sleeves, etc. I have trouble copying what other people do and sometimes can never figure it out. But I also have spatial-orientation problems, which is a whole other ballgame...lol.

Relax. Your kids have a lot of potential!

 

[buddy]

My son takes ritalin/Concerta and it does control his impulses which are severe and persistent, making him unable to even sit and eat when younger.
But, I always felt it made him crabby and the docs felt it probably did trigger seizures or lower his threshold.
This year with zyprexa working, we lowered his dose (still higher than most) and he is generally happier. Gets too silly and impulsively touches, says things more, but that is more tolerable to everyone than anger and rages.

medications may or may not change with an Autism Spectrum Disorders (ASD) or NonVerbal Learning Disorder (NVLD) diagnosis. But treatment and services generally changes dramatically. The proper therapy and use of supports known to work for Autism Spectrum Disorders (ASD) can later reduce the need for medications.

I have seen rages increase and become more dangerous in clients with Autism Spectrum Disorders (ASD) especially during hormonal changes, if they have poor expressive communication skills (esp low verbal kids). When identified early it's well known to work on expression and identification of different feelings as well as learning very concrete coping skills. It really is helpful to have the correct diagnosis in my humble opinion.

 

[TerryJ2]

I hate it when doctors prescribe zoloft and prozac for kids!!!! They are truly adult medications.

The things that worked for my son when he was younger, with-Asperger's and an undiagnosed mood disorder, were Adderal and clonidine. Now that he's 16, it's a different ballgame.

You have to be VERY assertive with-your doctors. If they don't agree, then find a new dr. If I had to do it over again, I'd be knocking on every single psychiatric door in the metro area.

I do not think the medications will have messed up your kids forever. It just feels like it right now.

Best of luck.

 

[JJJ]

Paper plate.....you can tell the doctor "no" that you will not give him stims. It is okay to disagree with them.

 

[paperplate]

JJJ-I have told them no to stuff in the past, it's just that this time, I feel like it's coming from all angles. Although, the school does finally understand that petit mals LOOL like he's just zoning out, but it's not the same as ADD, it's from a seizure.

 

[IT1967]

TerryJ2, did your son have the kind of issues I'm dealing with? Uncontrollable meltdowns, irritations that erupt at the simplest things (i.e., not doing well when bowling on Wii), rage over losing at anything? I'm exhausted and just so, so sick of it all. Before all this happened, I had agreed to have my neighbor's son over for an hour or so as a favor. He's 6 and he's telling my son not to get so upset about everything. My kids are so dang immature for their age. I never would've agreed to have this little boy over had I foreseen how son would be right now and I'm stuck, counting down the minutes til his mom comes to pick him up. I gave in let him play his DS and the kid is watching him play (per the kid's request). I hate this.

 

[IT1967]

So, I looked up Clonidine. It seems like the same kind of drug as Intuniv which my son is on and Concerta is a stimulant. Maybe I should've just stuck with-those 2 medications for him. He was doing fair. Not nearly as bad as he is now. Maybe I should've just been happy with-the way things were.

 

[InsaneCdn]

Well, now... maybe you should also be checking out one more possible diagnosis?

difficult child 2: 8, ADHD, Generalized Anxiety Disorder (GAD), ODD, gifted

difficult child 2's ADHD is pretty bad (inattentive).

Inattentive-type ADHD can be a mis-diagnosis...
In many kids, APDs can look like inattentive-type ADHD.
They don't pay attention - not because of focus, but because they can't follow the verbal instructions.
Then, being lost - they respond the same way as a non-focused ADHD kid.
But the problem is different.

Many schools will tell you it can't be Auditory Processing Disorders (APD) because their language skills are fine.
Wrong. SOME types of Auditory Processing Disorders (APD) affect language processing. But other types of Auditory Processing Disorders (APD) affect "sound" processing.
For example, auditory figure ground is a problem where the person hears everything... and can't filter out what is background. It is exhausting to live surrounded by noise (and classrooms are very noisy at the best of times), and then to live with being told you're not even trying...

Maybe time for a screening for APDs? make sure the testing includes "auditory figure ground" and "auditory discrimination" - some of the older tests don't.

For the record, APDs do not respond to medications.
There are interventions and accommodations that help - and even just knowing what the problem is, helps.

 

[TerryJ2]

IT1967,
Yes, yes, and yes, in regard to the irritation and meltdowns.
I hear you!

Clonidine is actually an adult heart medication, used off-label for kids to take the angry edge off. It makes them sleepy. It is NOT related to stimulants. Not in the same family of medications at all.

 

[STRESSEDTOMAX]

IT1967 -

I am in the same boat right now. I am looking for a new psychiatric and neuropsychologist to get a complete evaluation. For the past 6 weeks or so, we have lived with daily (many times 2-3) meltdowns/rages. I don't know what to do any more. I am literally going out of my mind. He is very immature. He will beg and beg to have one of his only friends over and then when he's here, he wants them to eat over, or sleep over, or another friend over, while almost ignoring the friend who is there!! He is very immature for his age.

He is on Tenex and Abilify. Has been on Depakote and Risperdal but he was gaining so much weight. He was like a bottomless well. He has gained about 20 lbs in the last year alone. I had started tapering his Abilify because he hasn't been medication free for years - and I wanted to see if they were really helping but I stopped doing that since the rages are going on. He may be headed back to Depakote or Risperdal. I don't know. All I know is I am doing my very best and I am exhausted. I'm curious as to your husband's take on all this because although my husband CLAIMS to understand that he has real diagnosis', most of the time when the meltdowns start, that so-called knowledge flies out the window and he starts a meltdown of his own.

 

[buddy]

IT, did you know clonidine comes in patch form? We use it because then the dose is maintained for nearly a week. (You change them every 4-7 days depending on dr orders/insurance. )

Sorry things are so challenging.