Seeking input on Chiari and moods.

[MomTerrified]

My son was diagnosed with Chiari Malformations last week. I have read a lot of information about it since. One thing that I do notice is that there is a lot of different opinions as to the effects from this. My main issue that I cannot seem to find a definitive answer to is if it can effect a persons mood and emotional states. My son has always been a highly reactive emotional person. He is easy to cry, get frustrated, become depressed and the worst of all have horrible rages when angry. He just explodes instantly, he screams, insults, swears, name calls, throws things, hits and kicks things sometimes he even gets physical with others. Over the past years he has been suspended from school dozens of times as far back as kindergarten due to this. He was diagnosed with ADD and ODD in grade 1 and has been on several different meds over the years to help him. He is now 15. All those years he had the hardest time sleeping and has been on sleeping pills also since grade 1. He has learning disabilities too. It seems like all the effects that a person can have with Chiari he has had. Could the Dr.s have been wrong all these years in regards to the ADD and ODD? Could it all relate to the Chiari? Have others seen these emotional issues with themselves or their family members with Chiari? Or am I just grasping at straws with this ( more like hopeful thinking, now having a different reason for the way he acts or reacts). It just seems the older he gets the worse he gets, if it is related to the Chiari I have some hope it may get better after surgery. I just want him to be happy and enjoy life and he just doesn't seem to and he hasn't been able to. Could this be the answer, finally?
Thanks

[n40066]

take a deep breath and put your seat belt on honey....you're in for a bumpy ride!  my son suffers terribly with bipolar disorder and also has spd...split personality disorder.  it is a devastating thing for both him and anyone who loves him.  i'm also a single mother and trust me when i tell you, you will get the brunt of all his anger!  if the dr. put him on respidol, he has bipolar.  not to mention your description of his behavior.  THE most important factors in maintaining a calm household and for him to be happy are consistent sleep patterns and taking his meds EVERY DAY at the same time.  DO NOT ALLOW HIM TO SKIP DOSES!  and VERY IMPORTANT!!!  MAKE HIM GO TO COUNSELING!  find a phsyciatrist  he can relate to, counselor, or phsycologist and make him go once a week until they get his meds right, then twice a week thereafter!  talk therapy is essential for their mental well being and growth.  i wish i had know this when my son was still a minor.  at 24, i have no say what so ever in his life.  makes helping him to help himself very difficult!   my son could not take the respidol.....wired him up too much and made him worse.  he's on trileptal and now lithium too.  the trileptal is a fantastic drug, as it does no damage to his internal organs like all the others do.  with the lithium, they should have blood test every 3 months once they get to their therapeutic level.  just a few words of advice.....don't bother getting into a shouting match with your son....you will never win and it tends to escalate the situation.  you can not reason with him if he is unmedicated and he doesn't have the ability to do so....don't try.  your son is still in there...that sweet loving boy you brought into this world.  but he's scared, confused and feels more guilt than you could ever comprehend!  he doesn't WANT  to talk to you the way he does, he just can't control it!  many bipolars commit suicide for the simple reason that they can't handle the guilt of what they have said and done to those they love most in the world!  try your best to never make him feel guilty.  it's hard, i know....but you obviously love your boy very much.  these kids are usually highly intelligent and creative.  my son graduated with high honors and is a very gifted musician.  but they seldom have good common sense!  my son is covered in tattoos from his neck to his knuckles!!  his reasoning when he first started getting them, was that would prohibit him from ever being able to do anything other than what he loved for a career, his music.  also, be VERY careful with pain meds or any kind of narcotics with him.  bipolars often try to self medicate to escape the racing craziness in their heads.  many have addiction issues.  mine falls into this category also.  he's clean at the moment, but it's been a heart breaking journey.  like i said in the beginning, it's a hard road. but they are our children and soooo worth it!  read as many books as you can, join support groups, do whatever you can to help understand what he's going thru and how to best communicate with him! oh!  and when he tells you he can't sleep, he really means it.  that's evidence of him going thru a manic phase.  talk to his dr about something to give him during this time that will help him get the rest he needs.  you will learn to recognize the symptoms.  also, the time around the full moon can and is very trying.  don't believe me?  there's one on the 19th of this month.  it can be either the week before or the week after, but they always struggle during this time.  it has never failed.  even when he's doing really great on his meds, i can always see the change.
i'm really sorry if all this sounds strong, but i'm a realist and this is life with a bipolar person.  i'd be happy to talk to you any time you want or need a friend or just have questions.  one more thing.....while he is still a minor, you need to force his therapist/dr to talk to you in detail about what's going on with him.  once he turns 18, you will lose that right due to hippa laws.  and that's not so far away.  you have two years to help your son.  make the most of it, my friend.  make the most of it before you lose the ability to help him at all.
many blessings and prayers for you and your son.  i'm here if you need me.
elizabeth

[MomTerrified]

Thanks to all for your input. Sorry I haven't been on for so long, computer fried. We have an appointment in Toronto for Jan. 26, really fast if you ask me, we just got the results. We are seeing Dr. J. Drake. I have searched him up and have found nothing but great things written about him.
Just before X-Mas my son's Psychiatrist prescribed him Respidol, he hasn't started it yet though. I am so worried about putting him on an Anti-psychotic med. This stuff is given to people with schizophrenia, bipolar disorder and has been used in the treatment of irritability in autistic children. He has never been diagnosed with any of the above. It is a mind altering big downer apparently. With The Chiari I worry about the two. I made sure he had read the report of the diagnosis from the MRI, I then asked him if it could be the reason for his behavior, he just shook his head and handed me the prescription. That was the extent of his reply.
It just baffles me. My son can be the sweetest kindest person who at times wears his heart on his sleeve then there are those times when I can't stand to be in the same house as him because he is freaking out. I just feel I need something definite as to why this is happening before putting on mind numbing drugs. I need answers, even if the answers are not what I want to hear such as Bi-Polar or Schizo. There has to be a reason he is the way he is? That way there could be a plan of action, a definite direction and goal. As soon as I was told about the Chiari I thought" Oh,that has to be what has been the problem all these years, thank god, finally" but from what I have read so far it doesn't appear to be the cause.  I am exhausted!!!! He is going on 16 and still no answers and now this diagnosis. I just don't know how much more I can take. I am a single Mom with no help from a Dad. He walked out 8 years ago and we haven't heard from him since. Everyday is like a war zone in my house and I am sure the neighbors at the end of the block can hear the screaming some days. He has the foulest mouth and just gets right in my face.
Anyway, enough of that. So, I was hoping I could get some help of what to ask when we finally get to Toronto for the face to face with the Dr. I mean I feel completely lost as to what this who diagnosis means for him in regards to the surgery, effects etc. All I have gotten from the Dr.s here is his MRI result shows Chiari Malformations. A bit of an explanation about what the results showed on the MRI in regards to where things were in his head and that was it. Nothing else, just the Dr. telling me that she would refer me to a Dr. in Toronto and now I have a letter telling me to be there. That's it and that's all.

[selmaS]

Hi Jackie,

I've gotten like that...laughing uncontrolled...and had no idea what was funny...but it always seemed to happen when I was over tired...which is most of the...but, u know when u r just tat that point u have to sleep, but u stayed up too long and u can't sleep....then I laugh at everything n nething....

I also will laugh so much I gag..till I vomit...yuck, I know, not sure if neone else has that happen....

Thanks for sharing Jackie : )

"selma"

[jacmurphy]

I guess we're 'lucky' Most of my son's mood swings are very happy ones. Too happy! Laughing for no reason.. becoming very giddy. He can become very argumentative .. but not really a bad mood. Says inappropriate things. It mostly happens when he's tired or even when he has one of his headaches. (Which is a lot!)
He holds his hands to his head and keeps saying.. don't know why I'm saying this.. or don't know why i'm laughing. I know it probably sounds funny.. but I find it really scary. The harder he laughs the more frightened his eyes look. He just has no control over it.
I've also noticed that noises can trigger him. The closest I can say to how he acts is.. it's like he's drunk. (including how he would walk when in this state)
This comes on him very quickly and leaves just as quickly. Straight afterwards he falls asleep.
And now i'm sitting here wondering if I should post this at all. I've been watching for posts that would be any way similar.

[jessbee82]

I am 20 years old, just recently diagnosed with Chiari Malformation.  My mood goes up and down like a roller coaster.  One second I can be completely fine and the next I am overwhelmed, irritated, frustrated and angry.  I have these issues severally when I don't eat properly or on time.  Chiari does make your mood all over the place.  If you are a Mom, I would suggest keeping an eye on your children's eating patterns.  If I don't eat within seconds of getting this weird feeling that I get than I loose it.  Try to ask your kid what they are feeling right before they explode, don't take it personally.  As a child my Mum always thought that I had low blood sugar issues so, if I had a fit, acted badly or whatever she would never get me into trouble or hold resentment because she was able to understand that it was uncontrollable for me even without knowing why.

[turk911]

I just want to say I feel like I could write this about my daughter!! HOLY COW! my daughter is 9 and has a chiari malformation, but is not 'symptomatic' according to her drs.  I am going to send her films out and about, but I have been told this for a year now.  Most recently, she was in the hospital trying to cure a 3 week headache, needless to say, she still has the headache, but its not from chiari.  I am so frustrated, but find great comfort here.  I was going to ask about other's exp with headaches when I found you.  I have wondered this same thing, but always wrote it off as something else. I have 3 daughters and understand the differnces in a child to another child.  However, this girl is knit together so different and has been her WHOLE LIFE! as a child you could not laugh at her at all, she would flip into a rage. We have taken her to psych. one said she was depressed, another said she has an oppositional defiant disorder.  I love this girl, but she is so difficult that some days I cry. her behavior has made her sisters not even like her. she reacts to everything by yelling as if she said it 100 times, she is so frustrated with her family's imperfections that she goes nuts on us about how we chew!  in addition, she is dyslexic and has reading trouble at school. which only adds to the stress of homehork,etc.  I just wanted to say, I do not know if they are related, but my daughter is a terror. i have to walk on eggshells and she still is a pain most days, right out of the bed she is cranky.  then other times, she is so darn sweet.  she would be a great vet or nurse because while she is a tyrant, she also is very empathetic to others, but not always.  there is no rhyme or reason. i am not kidding, some days i wonder if she is bipolar.  she will pick a fight with every person at our dinner table, seriously make everyone so frustrated with her that we are all cranky, then 5 minutes later she will say 'geez, why are you so cranky!'.  i just wanted to add my comment to yours.  i feel like i have some control because she is young, ih ave no idea how to manage her at 15. I hope you get some answers, because i get none.  my daughter has been treated with migraines since the chiari is not syptomatic.  i beg to differ!  

[MomTerrified]

That is exactly what he say's after... why do I act this way? My whole family has told me to be more firm with him, that he was just acting out. But I knew there was more to it, I would see how upset he would get after. He is just so sweet and loving all the other times that it just never made sense to me. We haven't seen a Neurosurgeon yet, we are awaiting a Teleconference with a Dr. from Sick Kids in Toronto. When he was 3 he had Meningitis and for all these years I always thought that maybe his issues were related to that. He was so ill with it and had seizures, extremely high fever, etc. I have been bugging Dr.s all this time for an answer and finally we have gotten one. Now we have a direction to go in and believe me it is a great relief if that sense but discovering this issue has been quite stressful to say the least. When speaking with his Psychiatrist yesterday about it he said that there was no way that this would effect his moods and has decided to put him on Respirtal (sp.?) , an anti-psychotic drug. No sure if an going to do this though would rather wait to speak with Dr. in Toronto first. At the moment trying to take it slow and think everything through first.

[selmaS]

Hi and welcome to the Chiari forum.

Yes, chiari can affect moods...we r more emotional ...and can be moody....I always thought that is just who I am, my father told me it was who I choose to be and I could control it, I knew he was wrong...but how do u explain this....iti s not easy...

Now that I have my dx and know a little about  chiari and it's effects I am comfortable saying that yes, it can  and the reason I feel that is this...with chiari we have overcrowding and compression of the brain stem....the brain stem is the control center for everything....
our breathing, our heart beating, and yes our emotions and how we handle them....

Sleeping issues is another big problem for chiarians...and do have  him checked for sleep apnea....one thing most often over looked by too many drs.

Is it possible that it is chiari and not  ADD and ODD???...sure, nething is  possible, and i tis also possible that he has these in addition to chiari.

I have found, I am still emotional even post op, but I went 50 yrs like this...so how long will it take to undo it?....but, I also found I am a calmer person....not so quick to temper like when I was younger...and it is a bit of the Pavlov  effect...with chiari the more upset u become the more ur head hurts...so u learn- I have to avoid this....and u do...and he will too.
In fact I am sure even during a tirade he is thinking y am I doing this , it makes no sense to be this upset over this....

Be sure to fine a true chiari specialist and one that is a pediatric specialist not all will work with children and vice versa.

We do have a list of drs here, it is a list to use as a starting point for researching a dr, not as a referral.I saw u posted  something on the list so u did find it.....

We r alway happy to welcome someone new to our little family here, but we r never happy for the reason that have brought u, especially when a child is involved.

"selma"