http://drdrew.blogs.cnn.com/

Now,  am I the only one thinking… Conversion disorder??

Really?

These girls all attend the same high school.  They are all around the same age.  In all of them this illness came on suddenly and is now life altering.   To me, there is such a miniscule chance of this being conversion disorder and psychologically based.  This is some kind of toxin (be it a virus, a bacteria, a metal, a mold, a fungus) that these girls were all exposed to and is affecting them neurologically.  And someone needs to help them find out what it is. Now, may stress be exacerbating the symptoms?  Sure.  But that is not what is causing this.

And I’m really upset that they so far are leaving it to the State of New York to rule out physical causes.  That’s like leaving it to a pharmaceutical company or the FDA to tell you if a drug is safe or not.  Let’s get some real, unbiased help for these girls.  They deserve it.

As far as the show itself goes, here’s the part that really disturbed me.  As the show and interview were taking place, one of the girls fell to the floor in a seizure.  As the show rolled on and the burden was on the girl’s mom to care for her seizing daughter while continuing to answer questions on camera, Dr. Drew was very concerned for the girl and was visually distressed by the situation and concerned about the seizing girl’s well being-which was reassuring.  He continually asked how the girl was doing and showed great empathy for her and her mom’s situation.  Dr. Sharp [the Psychiatrist from Harvard Medical School], on the other hand, not so much.  Maybe it was just that he was trying to answer Dr. Drew’s questions, but Dr. Sharp continued to talk on through the crisis and through the seizure about how this is probably psychologically based and is caused by a disturbance in their psyche(s).  And he seemed to just think the seizure this particular girl was having right then and there was caused by the emotional stress of the interview, thereby affirming the hypothesis that this could be caused by conversion disorder.

To watch these girls and this family go through this horror and then be brave enough to share about it on television only to be told by a Harvard Psychiatrist that this is a psychological reaction to… what?  School stress?  As the girls are literally seizing and having massive tics and falling apart right there on camera.  Ughh.  It was terribly sad to watch.  And really disheartening.  And doesn’t speak very well for psychiatry, if you ask me.

It was unforgettable.

Going forward, I really hope these girls and their families get some high quality medical help from this exposure. Someone needs to step up and get these families some true comprehensive help.

Rages are an extreme presentation of behavior that can be exhibited in unstable people with bipolar disorder.  Some say rages are brought on by depression, some say mania, and some say they are seizures.  Really, it doesn’t matter.   The fact is, nothing good comes from rages.

Rages are:  out of control, destructive, yelling, screaming, hitting, threats, property damage, self damage, suicide threats, all of it.

For me and for our family, rages are an unacceptable part of bipolar disorder and must be proactively prevented and addressed with medication and trigger awareness.  Rages are often seen in younger children and while these are difficult and can be scary for parents, they are manageable while the child is young.  Rages in pre-teens, teens and adults, however, are dangerous and need to be addressed immediately and prevented with proper medication.

Think about it, your child is young and rages.  They are smaller than you.  You do what you can to prevent physical damage, mitigate the situation, protect the other children and animals in the path of destruction.  And more often than not, you can.   The rage passes and although people are shaken and some property may be damaged, things are still somewhat ok.

But then your child gets older.  They get stronger.  They get more socially aware and their peers notice their behavior.  Society knows that their brains are more mature and people expect more from them.  My son at 13 years old is taller and stronger than anyone else in our house (well, technically Don is still stronger than Rye but if Rye were to rage his adrenaline rush would make him strong enough to overcome Don).   He is 13 and over 6ft tall with shoes on.  And he is athletic and strong.

So, what do we do?  We can’t say that rages are ‘just a part of bipolar disorder’ to be worked through.  No way.  If you’ve ever lived with an adult that rages you know just how much emotional and physical damage can be done by this behavior.  Ragers are terrifying.  We must actively work to get the medication right.  And work to get trigger awareness. It is imperative that we prevent rages, not just deal with them once they happen. The stakes are too high now.  Once a rage happens, it’s quite possibly too late.  A full blown rage at this age would more likely than not result in a 5150 hospital admittance or police restraint.  And we don’t want either.  Also, we want Rye to be able to control himself, his environment, his relationships and have a high quality of life.    If he can’t control himself, he can’t have a high quality of life becasue he’s like a cannon constantly waiting to go off.  And he knows it, his friends know it, everyone knows it.  And eventually no one wants any part of it.

I’m happy to say that due to me getting over my fears of medication (which took a while), Rye has not had a rage in long time now.  I feel he is stable and now has the proper amount of medication for him to be stable.  Does he still get mad?  Yes.  Does he still get frustrated?  Yes.  And we actively work to prevent environmental triggers as well.  But with the Depakote and Seroquel (which we have started using daily) he is in control of his life.  He still laughs a lot and is very silly.  He still loves to have fun and is quite the character.  He still gets sad.  But he doesn’t get extreme and he doesn’t do things that endanger himself or others.

And we are aware…this is a work in progress.  And always will be.  Rye is always susceptible to rages.  It’s how his brain work.  But we can work with it to the best of our ability and work to give him the best life possible.  And that’s what we do.

Well, crud.  The boy is having brain zaps.  And they are pretty bad today.

From what I’ve read this evening I think they must be coming from the Seroquel.  He does not take it every day but rather only when he needs it.   However, with the recent stress from school he has been taking it more often.   I don’t know.  There must be something about it as I read the brain zaps are a very common side effect of Seroquel withdrawal [as well as antidepressant withdrawal and Abilify withdrawal- which we don't use but I found interesting].  And although he is not withdrawing from Seroquel perhaps the off and on nature of taking it is messing up his system.

I’ll call the doctor tomorrow to see what he says and also see if we need to rule out seizure activity.  Rye says sometimes he feels like he is having seizures, which is concerning.

To be continued.

A few weeks back a mom emailed me regarding her daughter who had been diagnosed as a young girl with bipolar disorder.  Her daughter is now grown but through a series of emails she shared with me a bit of history about her daughter’s struggles when she was younger with school and moods and their subsequent journey to heal her naturally.  Although I was fascinated with the information, I was a little overloaded at the time with our change to homeschooling and could not fully process the information.  Now I am adjusted to our schedule and am going back and looking deeper into the information she sent me.  She sent me some great information about thyroid function, vitamin processing (or lack thereof), nutrition and chiropractic treatment.   In the last email we exchanged she told me that her daughter felt one of the best things she did to help herself was upper cervical chiropractic adjustments.  So, I started researching this a bit.  Could this help Rye as well?

Here are some of the links and examples I found that say maybe yes:

Female, Age 8 years, Bipolar Disorder

At her evaluation, an upper neck injury was discovered. Her parents recalled that she fell out of her bed at age 2 and surmised that perhaps that fall was the source of their child’s neck injury. After undergoing the first upper cervical adjustment, no further adjustments were necessary as her neck healed and stabilized. In the first month, her parents reported some improvement in her condition but that her mood still fluctuated quite extensively. By the third month, her parents reported a substantial improvement in her mood in that she could easily handle situations that previously had set off episodes of mania, such as birthday parties, sleepovers, etc. In addition, they reported that she had also experienced improvement in her motor developement in that balance and coordination had also dramatically improved.

http://www.erinelster.com/CaseStudies.aspx?ConditionID=4

After 1 month of care, the patient reported an absence of seizures and manic episodes and improved sleep patterns. After 4 months of care, seizures and manic episodes remained absent and migraine headaches were reduced from 3 per week to 2 per month. After 7 months of care, the patient reported the complete absence of symptoms. Eighteen months later, the patient remains asymptomatic. CONCLUSION: The onset of the symptoms following the patient’s accident, the immediate reduction in symptoms correlating with the initiation of care, and the complete absence of all symptoms within 7 months of care suggest a link between the patient’s headfirst fall, the upper cervical subluxation, and his neurological conditions. Further investigation into upper cervical trauma as a contributing factor to bipolar disorder, sleep disorder, seizure disorder, and migraine headaches should be pursued.

http://www.ncbi.nlm.nih.gov/pubmed/15129207

Cases regarding epilepsy and add/adhd and autism.

http://www.839-7171.com/index.php?p=72138

http://www.839-7171.com/index.php?p=72134

Son with ADHD & Bipolar

My son Christian was diagnosed with ADHD at the age of 3. His behavior was very different from his twin sisters in that he was very hyperactive, impulsive, irritable, and was not able to focus. I had been bringing him to Goldsboro Pediatrics and was then referred to Greenville Psychiatrists. He was prescribed numerous medications such as Clonidine, Trileptal, Concerta, Abilifi and several therapists, including speech and behavioral. The edications seemed to help for a short time but the problems would return.

http://www.chiropracticadv.com/adhd-bipolar.html

Various case studies regarding upper c spine adjustments helping a variety of situations and symptoms.

http://www.upcspine.com/

Now, I am not saying this is going to work for us.  But there is obviously evidence that is helps some people.  And, as luck in on our side with this one, Don has a good friend who is a very successful chiropractor and we spoke with him about this type of treatment and he is going to research the specifics of it and try and help us. So we are seeking his help on this and start this week.

Who knows?  We may be one of people helped by this.  It’s worth a try.

Thanks Polly!  I am looking into the rest of your information as well.

[Note: the sculpture at the top of the post and others like it can be found at
http://www.theprofessionalcollection.com/Metal%20Creations/medical_figurines.htm ]

I’ve been reading a lot of articles lately of recent accounts of children dying from taking pharmaceutical psychiatric drugs.  In one case the child’s body system shut down due to overdose, in another the child had a heart attack, and in another the child hung himself.

And all I can think is, if you give your child pharmaceutical drugs (which I have done and will most likely do again – although my child is older now and the risks of use are less than with younger children) and the child dies as a result of taking said medications [be it by organ failure, suicide, allergic reaction, whatever], who is responsible for the death?  Is it the parent responsible?  Is it the doctor that prescribed the medicine responsible?  How is this decided?

And does it matter who is responsible?  Or is it a mute point once the child is dead?

What if one parent wants to medicate the child and the other doesn’t?  Whose opinion wins and makes that final decision and if the final decision is to medicate how does the other parent feel?

And, what if the medicines given to the child are prescribed under the category of ‘off-label’, meaning they are not approved by the FDA for children as young as are receiving them because those meds have never been tested on that population and no one knows the long term results of the medicine on young, developing brains?  Then who is responsible if something goes wrong?  The doctor that prescribes the meds for off-label use or the parents that accept and utilize the meds for off-label purposes?

I know with Rye we have tried quite a few meds.  We have not had great luck so far and have actually had some very scary results from some of them.  To the point that right now the only ones I think I’d even be willing to try again are Depakote or Lithium.

But I always wonder…how do you know when the potential benefits of using psychiatric medications outweigh the risks?

I can’t tell you how many stories I have heard of parents using anti-psychotics to calm a child down or reduce mania only to find that after years of using the anti-psychotic for the one reason, when they then try to take the child off the med for whatever reason the child now actually has a permanent thought process disorder or permanent psychosis.   That is freaking scary.   And these are kids who never had hallucinations or delusions prior to taking medication, they were just hyper or appeared to be manic.  And now they have a thought disorder.  Or permanent tics.  That happens as well.  Or man boobs.  That can only be corrected with surgery.  That happens as well.

And what about polypharmacology?  On children.   That’s a whole can of worms in and of itself that I honestly believe no one fully understands, especially when you take into account how different each individual’s body chemistry is.

I know for us personally we have used Adderall two different times in Rye’s life (yes, we were stupid enough to do it again after one really bad reaction) and both times the Adderall caused mania and psychosis.  The first time at 6 years old, when the Adderall was combined with Risperdal, it also caused a Grand Mal seizure.  The second time this manic/psychotic reaction to Adderall happened, at age 12, it took us months to get him out of the psychosis.  It was really scary.   And had I not been very cynical of the meds and always questioning our psychiatrist (which don’t you know he just loves – thank god the man is very expereinced, patient and flexible), we probably would have thought Rye needed to be on anti-psychotics forever, which he does not.  The psychosis did go away.  Both times.

I’ll tell you, I don’t have any answers but I do know that it’s all scary.  I would never forgive myself if my child died from taking a psychiatric medicine I gave him.  That said, I know I also have to be careful that he doesn’t die from the symptoms of his illness either, which makes it a delicate balancing act.

It’s tough.  These are tough decisions to make, there’s no doubt about it.  And I can see why parents choose all different routes.   Medicating is stressful.  Not medicating is stressful.

None of it is easy.

This is where we are again.  Rye had an incident yesterday where out of nowhere he spent about 3 minutes blurting out expletives non-stop.   I mean non-stop.  It is so weird when he does that.  You can’t believe how fast he can rattle them off.  We were in the car when it happened (as oddly we often are…I wonder what that’s all about come to think of it) and when we got home he said he needed a pill as his brain was on overload.

Klonopin.  This is our new PRN pill.   Klonopin is for seizure control and is also used for anxiety.  And it helped.  The blurting stopped and he calmed down and said he felt much better about an hour later.  This morning he said this pill helps much better than the Abilify.  This one actually stops his brain from firing too hard and fast whereas the last time he took the Abilify he said it made things worse.   Interesting.

I made an appointment with the Neurologist this morning.  They take forever to get into.  October was the first appointment for the one I really want to see and the end of May is the first appointment with the one we’ve seen before.  ughh.  I guess if it gets really bad you just go through the ER and get seen quicker.  Maybe, I don’t know.  I also made an appointment with a new family doctor that is supposed to be really good.  Maybe he can move things along faster or at least just order the EEG.  There is a real shortage of  Neurologists where we live so that is a good part of the problem.

Klonopin is not a long term solution and I won’t use it every day with Rye.  It is a benzo and it is addicting and has a terrible withdrawal if you get hooked on it.  But, on an as needed basis it looks like it helps and until we get a better long term solution we need it.

So, here we are.   Wait, wait, wait….

Luckily our benfits start in April so if we have to go to the ER we can.

It turned out to be a bit of a bust. I took Rye out of school early and we came home for lunch to transition.  Then as we were trying to get out the door to drive up there he completely fell apart and did not want to go.  He was crying and turned into a total bag of tears about he was scared of me dying and for some reason he thought I was 49 years old and told all of his teachers that I am 49 and his dad is 29 (where the hell this came from I have no idea – I am not 49 and Don is not 29).

And what is he going to do when he is 60 and I am dead?  And where will he live when he’s 18?  He wants to live next door to us but then he wants to live far away from us.  And it went on and on.  Then he said his teachers were saying in class how he would not want to be around his parents anymore during his teen years and this scared him because he likes to be with his parents and does not want to be away from us (he has some pretty hefty separation anxiety).   In response I told him I have no plans of dying anytime soon and when he turns 18 he is welcome to live next door to us or on the other side of the world if he wants.  Whatever he needs to do.  Also, it’s fine to hang out with me and Don during his teen years or forever – he does not have to not like us during his teen years.  That is ridiculous.

Anyway, it finally simmered down but he did not want to go talk to the psychiatrist.  Apparently the last time he was there they had a discussion about masturbation that put Rye over the edge.  I’m sure the doctor was trying to be helpful as he probably thinks Rye does not talk to us about these things and was trying to be cool and hip but he was wrong and it freaked Rye out and he would not go back.  So, I went and talked to the doctor instead for the hour while Rye waited in the car.  The doc seemed a bit hurt that Rye would not talk to him but whatever.  I’m not going to force my kid to talk about masturbation with someone he sees once or twice a month if he doesn’t want to.  Forget it.

The doctor and I talked for the hour and the consensus is that we need to get an EEG to see about the seizures but that seizures or no seizures there is a definite mood disregulation issue with Rye so there are most likely both components.  I told him about that ‘going to California’ incident and he said that does sound more like a seizure.  He also said though that it’s important to be careful in comparing bipolar in children/teens to adults with bipolar becasue they don’t look the same.  Children/teens have more of a mood regulation issues rather than always the true hardcore mania/deep depressions that adults get.  And this does fit Rye.  He definitely has mood regulation issues.

We decided trying Depakote would be the next step to try and smooth things out a bit and help with seizures as well but he does not want to do anything until we get the EEG.  And we can’t get that until April due to our being between insurance plans right now and having to make an appt with a neurologist.  So, we will be our same selves for a while here [unless, that is, we had some local gladiator blood in which case we could try this.  But alas, we don't].

Anyway, we left and Rye was perky and pleasant for the rest of the night.

And he made it to school on time today.  That always feels like a great accomplishment over here.

From what I understand, bipolar disorder and seizures often go hand in hand.  I wonder if this is the case with Rye.  It was suggested to me a while back that he may have Frontal Lobe Epilepsy.  And the more his ‘incidents’ occur the more I think it’s possible.

Sometimes it’s so weird to me how they can come and go so suddenly and he seems to have very little recognition of them afterward.  This sudden onset and sudden disappearance are unlike normal mania, from what I can tell from other people’s experiences.  For example, in this last incident that I interpreted as mania, looking back on it it really looked more like a seizure.  I mean he was fine one minute and then the next got very agitated and began verbally blasting out expletives as if he had absolutely no control of his brain or verbalization – basically like they depict people as having Tourette’s Syndrome in movies.  Just one expletive after the next, after the next.  Completely nonsensical.  Then he got extremely out of control hyper, angry and violent and then got that weird, distant look and was having delusional thinking about going to California.  Then finally when I said I needed to give him the Abilify, shortly thereafter the whole thing was completely over.  And he was fine the rest of the weekend.

Weird.

And when these events happen he never really has much of a memory of the whole event or has any ideas of the indicator of what triggered it.  Especially the verbal part.  He will have no memory of blurting out expletives at a rate of about one per second for 30 seconds.  It’s just completely involuntary.

Anyway, from what I have read seizures can look like many things including severe hyperactivity, night terrors, anger outbursts, acts of violence, loss of verbal inhibition, and even hallucinations and delusions.   Many times people with bipolar disorder also have seizures.  And many times people with seizures are misdiagnosed as having psychiatric disorders when, in fact, they have seizure activity.

Here are some links on the subject:

http://www.epires-journal.com/article/S0920-1211(09)00081-3/abstract

http://en.wikipedia.org/wiki/Frontal_lobe_epilepsy

http://en.wikipedia.org/wiki/Temporal_lobe_epilepsy

Interestingly many famous people, some of whom were thought to have bipolar disorder, have also been suspected as having Temporal Lobe Epilepsy including Sylvia Plath, Edgar Allan Poe and Lewis Carroll (Charles Dodgson).