I Don't Know What He Is

[Ann Yoxtheimer]

I have a son I am so worried about. He is 9, and we've been having trouble with him since he was 5 and entered kindergarten. He attacked children for no reason and with no provocation. He started in kindergarten, and he had not been having problems anywhere else. After a few months in kindergarten, he was having trouble in church too. He also could not learn to read. He still cannot read. In January of 2009, the psychiatrist diagnosed him with ADHD and anxiety, and gave him Prozac and Concerta. It was like a light switch had been flipped. He became my good-natured and sweet child again. He went from getting suspended every other day to winning award for his behavior. This lasted exactly 12 months. After 12 months, he slowly deteriorated until he was worse than before. They tried adding Risperdal to the mix. They tried several other medicines too. Soon we discovered that he cannot take any stimulants or antidepressants without becoming aggressive and even psychotic. I had to hospitalize him last year in October for psychosis.

He is now on Abilify and Depakote, but he cannot tolerate any frustrations of any kind, and he follows me around all day, clinging to me for dear life. He's also doing some bizarre rocking motions. The really weird thing he does is when he becomes very unstable he begins to act like an animal. He hisses like a snake, whimpers like a puppy, barks and growls like a dog. I read another post from a mother who's son does the same thing. I'm thinking about asking for seroquel from the doctor, because I have a mood disorder and seroquel works for me. I have a blog about him if anyone is interested. just google xanders war.

Any thoughts?

 

[Malika]

Hello and welcome to the forum. I did have a look at your blog and read some of your posts
A quick question - it is late here and I am heading to bed - which is a question I have often wanted to ask others here. If your son is taking medication and his behaviour is still very disturbed and disrupting, what would he be like with no medications? I often feel confused about the fact that children who are medicated seem to be manifesting violent, aggressive or disruptive behaviour - making me wonder what the point of medicating is.
This is not an anti-medications rant!! I really would like to understand more, particularly as I have started to feel open to the possibility of one day trying medications with my son (sounds suitably non-committal...)
Hugs. I can only extend my empathy and understanding for the difficulties you face every day.

 

[BusynMember]

Has he ever seen a neuropsychologist? The rocking, peculiar behavior, and inability to handle frustration could mean he is on the high end of the autism spectrum and a psychiatrist is not the best one to diagnose that. If it is something else, a neuropsychologist will catch that as well. By age nine he SHOULD be reading...he obviously has something preventing him from learning and in my opinion it's over-the-top beyond ADHD. But that is the usual first diagnosis if you do not see a neuropsychologist first. Who diagnosed him?

Does he have a school IEP?

Are there any psychiatric problems on either side of his family tree (Genetic)? Does he live in an intact family? How was his early development? Does he understand how to get along with his same age peers? It would help if you told us more about him and maybe do a signature like I did below to refresh our memories as to who you are.

I agree about the medications. I had my son on medications and they didn't work. In fact they made him worse. He is now medication free and is doing fine. Your son MAY need medications, but right now, if he hasn't had an intensive evaluation, it is hard to know just what type of medications would work best for him. At the very worst scenario, medications can make kids even worse.

Welcome to the board. I am so sorry you have to be here, but, trust me, all of us understand.

 

[TeDo]

From the sounds of it, I see two possibilities. First, the diagnosis of ADHD and anxiety may not be entirely correct. Sometimes, as it was in my case, those are also part of other disorders. In our case, it was Autism Spectrum. His difficulty learning to read (and maybe other learning issues) could have caused frustration for him to the point of aggression. His rocking and other "bizarre" behavior sounds all too familiar. A neuropsychologist or even a second opinion could straighten that out. My son cannot take stimulants or antipsychotics because he has paradoxical reactions to them.

Second, he might not be on the right medications or at the right dosages. If he does have something other than the current diagnosis, medications for those diagnoses probably won't help (at least not for long). If the medications aren't at the right dosage, behaviors would worsen again until the right dosage is reached.

Does he have an IEP at school? If not, I would recommend you request (in writing) that they assess him for special education services. It will be helpful at school and provide him with supports in the areas he struggles with: behavior & reading. The assessments they do might also pick up on some other unkown issues he is having academically. If those can be addressed, some of the other issues may fall into place.

Welcome to the "family" and hope you find this place as helpful and supportive as I have. Other wise warriors will be along. Week-ends are usually kind of slow so be patient.

 

[keista]

I was thinking along the lines of Midwestmom and Tedo. Sounds like an Autism Spectrum Disorders (ASD). If you haven't ruled it out yet, research online some ASDs. Pervasive Developmental Disorder (PDD) not otherwise specified or Asperger's are most likely. Read the symptom lists, and a few stories from parents. The symptom lists can be very "technical" any you might not think it fits your son until you hear a parent describing it. If it rings any bells for you, then I would start asking doctors for specific evaluations for that. Yes, neuropsychologist is the best, but not all insurance is gonna pay for it and it can be very pricey.

Welcome to the board. Stick around. This is a great place for support, insights and guidance.

 

[InsaneCdn]

And it may not be just ONE diagnosis, either... we're at 6 and counting.

Learning disabilities can co-exist will all sorts of other diagnosis, so reading problems, per se, are not necessarily a sign of any particular medical diagnosis.

ADHD medications - need constant monitoring, and adjustments as they grow, so he may have outgrown the dosage, which would account for losing effectiveness - but does NOT account for some of the other behaviors (rocking, etc.)

If you can't get neuropsychologist (we can't get access here), a PhD Psychologist may be another option - but you really need the PhD part... these ones know how to research, and seem to really pay attention to details - even picked up stuff for us from previous testing, that the original report-writers missed.

Like others on this thread, I'd lean toward a possiblity of something on the Pervasive Developmental Disorder (PDD) range - definitely more pervasive than "just" ADHD. OR, it could be something physical - like a brain tumor... so, you'll need to get the "medical" possibilities ruled out as well. (Seems like the advantage of the neuropsychologist is that they can cover both bases - otherwise, you need two specialists, and have to get them to work together and agree... but it can be done)

 

[Ann Yoxtheimer]

Thank you everyone for your comments and suggestions. Everyone here is so kind! To answer some of your questions, he does have an IEP. In fact, his school day had to be entirely restructured for him. He has a "shadow" that follows him, and he only goes to school (when he went to school--it's June now) for about 2 and a half hours a day. He spent 6 weeks last year in an intensive outpatient therapy center/school, until his insurance wouldn't pay for it anymore. Now he has TEFRA Medicaid because he is considered disabled.

To answer the question as to what he is like without medications, we took him off of all of his medications last year (because they weren't working), and we had to hospitalize him for psychosis. He even tried to destroy the furniture in the children's ER because he thought the chairs were threatening him. He attacked the nurses in the ER so much that they finally called in security to restrain him. It took 3 security guards and five nurses to hold him down so that they could sedate him. That was bar none the worst night of my life. He stayed in the hospital for a week. He would have been there longer, but he was so unhappy there at night without us.

I was speaking to the developmental pediatrics department at the children's hospital today, and the nurse I spoke with was hesitant to say autistic spectrum for him, and this is why: when he first started his medications in January 2009, a switch was flipped, and he became a perfect angel for 12 months. After 12 months, he gradually deteriorated until he had to be hospitalized. Her feeling was that medicine could not have cured him if he was autistic, which is true. Also, the rocking and repeating everything did not start until a few months ago.

Another question was does he come from a fractured home or does mental illness run in the family? Yes on both counts. His father is bipolar, and was EXTREMELY mentally ill while we were together. He had a doctor that was prescribing him massive doses of amphetamines for a "supposed" case of narcolepsy. These made him manic, and I finally ran in fear for my life. He then kidnapped my son and ran with him to another state. It took a court order to have him returned. The ex is more stable now, but still not all there. I am remarried now. There is also bipolar illness on my side of the family, so I know Xander is bipolar, but I don't think that is his only problem. I appreciate the suggestion about the neuropsychologist. I will look into that.

Me: Anxiety and mood disorder
Son: Mood disorder, anxiety, ADHD, ODD, Obsessive Compulsive Disorder (OCD),
Other son: ADHD
Normal Husband:
Stepson: Normal

 

[Ann Yoxtheimer]

Also, I wanted to tell everyone that has replied that my son has tried several medicines, at several different dosages. I could start a pharmacy with his left overs.

Me: Anxiety, mood disorder
Son: mood disorder, axnxiety, ODD, Obsessive Compulsive Disorder (OCD), ADHD

 

[BusynMember]

Did your son ever hallucinate before medication? Sometimes coming off the medications can cause that (seriously!).

If he indeed hallucinates there really is no option other than medication...I can't imagine giving stimulants to a child who hallucinates though! Hallucinating is neither a part of ADHD or autism spectrum disorder.

Thanks for checking back in.

 

[susiestar]

I am so sorry about all the things you are all enduring. It is SO scary when your child is mentally ill, esp when hallucinations enter into things. There are things like PTSD that can cause hallucinations. My son has asperger's which includes adhd, and also Obsessive Compulsive Disorder (OCD), but had a psychotic break with hallucinations. In his case he lost his grip on the line between fantasy and reality. I knew it was always tenuous but no one believed it. Finally at age 12 he believed if he could just find a way to get to Japan he could find a real, live pokemon and/or real demons to do his bidding. Frustration over not being able to get to Japan and over no one believing he was serious and a teacher letting him online unsupervised against written directions that he was to ahve NO online access, well, he tipped into true psychosis. he spent 4 months in a psychiatric hospital and it changed a LOT.

SO you are NOT alone. It must be even scarier as he is so young, but other parents here have also experienced this and will add support.

Given a mood disorder, I urge you STRONGLY to get a copy of The Bipolar Child and read it. Esp read the medication protocol. There may be autism issues involved also, but that needs to be evaluated AFTER his mooods are stabilized. Soem people with bipolar do well for a period of time on ssri's but when they stop doing well they likely won't ever tolerate them again.

Mood disorders need to be medicated and stabilized first, before other problems are addressed. This is because many medications, even OTC cold medications like decongestants, can make their moods cycle. It can take finding the right combination of up to TWO mood stabilizers and an antipsychotic to get the moods stabilized. All of this is in the book. I have no idea why, but MANY psychiatrists do NOT want to follow this protocol. It is set up and approved by the Boards taht certify both child and adolesc psychiatrists and adult psychiatrists, but I have yet to meet a psychiatrist who doesn't want to try SSRI's or anxiety medications or stimulants before them. I also ahve yet to get a good answer telling me WHY they want to not follow the protocol that is approved. NO doctor has even tried to give me any logical reason to not follow the protocol other than that they don't want to do blood work because it is "too hard" on kids. Gee, a ten min blood draw vs weeks/months of mood cycling? Let me think which is worse for the child.

Even if your son is unipolar depressed it is a good idea to try the medication protocol first, in my opinion. That is more rare than many people know and often mania is easier to overlook/ignore in a child. esp if you don't live with the child! These are just suggestions, of course. I hope that you get some relief soon.

 

[Ann Yoxtheimer]

It sure is nice to confer with people who understand! The people here seem to really understand, and unless you've seen it you often don't. For the person who suggested the book The Bipolar Child, I appreciate that. I read it last year, and you're right about it. It's a fabulous book. It's puzzling to see the warnings given in the book regarding antidepressants and stimulants, and then enter the psychiatrist's office. The first thing the doctors want to give your child is antidepressants and stimulants. Even after proven problems with it, the psychiatrists are still pushing them. I have to tell them no. As for whether he was having hallucinations before the medications, I don't really know. He told me quite calmly one day that he had been hearing voices, but he was so young, and been given so many tests where they ask you if you're hearing voices, that I wasn't sure if he was making it up or not. I never saw any evidence of it before last year.