I need help with question list to psychiatrist re dissociation etc.

[SuZir]

Okay, difficult child recently told me what kind of dissociative symptoms he has (I wrote more of those in Parent Emeritus.) I decided I wanted to talk with an expert about the whole phenomenon (thanks DDD for an idea) and booked myself a psychiatrist appointment to get more information. I have of course read about everything I can find, but how that really relates to real life is something I don't fully understand.

Our doctors never want to step into colleagues' territory, take a strong stand that they can't say anything relating to any case if it is not their patient (expect disability insurance doctors, they are great in discrediting diagnosis without ever seeing a patient) and generally seem to think that everyone not MD is an idiot. However I'm not eager to pay 200 bucks to have wikipedia article and standard treatment protocol read to me aloud. I mean, I have known how to read closer to 40 years now, I can read those myself, and have done so many times. To get anything more out of it I will need to be prepared and have specific questions to ask.

What I do want to know is of course how I should react to this. I mean, what I would like to do is about this and this but I do get that is probably not a best idea. But I'm not sure about this "Oh, you see and hear things that you know are not real, but can't make it stop. How interesting honey!"-approach is the best either.

Being who am I, I would also like to hear something concrete. I know psychiatrist can not give me any relevant prognosis for my son, but there has to be some kind of common understanding on how things usually go with patients similar to my kid. I want numbers, darn it! I do get that there is not study that tells how many per cent of 19 year old stubborn and idiotic boys with moderate dissociative symptoms along with their PTSD, some older trauma history and neurological differences and relatively high functioning turn out well. But there has to be something more than "many recover well, with some the symptoms become chronic."

Third thing I really want to have an understanding with is how the treatment process should go, what I have to keep an eye. Yes, difficult child is an adult. This is his private issue. He has to be in driver's seat in dealing with it. I can't force him to anything and even trying would be counterproductive. I can ask questions and maybe make some suggestions, but that is it. I get that. But, and that is a big but, difficult child's situation is rather unique. He can be pressured strongly by his employer and their medical team to do this or that. His current team has been good to him but now it seems quite likely he will change teams this summer. With some options I feel more secure, but some could be very risky with difficult child's mental health issues. I need to know how things should go and when we will need to put our foot down, if it comes to that. While that would be counterproductive as I said, if the circumstances are bad enough it may still be an only option.

And fourth thing I want, is to simply get a better handle to this whole phenomenon.

I have an appointment booked for next week with psychiatrist who special interests include trauma patients and I need help on making a list of questions I can ask. Could you please help me with this?

 

[DammitJanet]

We need to talk. I am going to go read your thread in depth. I just glanced at it but now I am going to really read it deeply but you and I need to talk in PM privately. I wish we could talk on the phone but you are international so that wont work. Maybe in the end we can set up some kind of skype to do this...I dont know but I know quite a bit about this subject.

 

[DammitJanet]

Okay, I read your other post and I will give you a short synopsis of why I understand his issues.

I have suffered with both of these issues for the past 30 years. I never had a name for them of course. I was abused for most of my life at the hands of my mother and a few times at the hands of my father. When I was 18 I was force-ably kidnapped at knife point along with my best friend and gang raped by two black men. Then the police ridiculed us on the way to the hospital about how we deserved it, and then at the hospital her parents blamed me and said I set it up. It was a horrible time in my life. Her parents immediately sent her away and I was never allowed to see her again so I lost my best friend on that night too along with everything else that happened.

After that I lost myself for a long long time. I became a complete shell of the girl I had been. I was empty and I couldnt even function normally. For years I didnt know feel me. My mother moved a guy into my house almost immediately after the rape....literally one month after the event and she said what I needed to get over what had happened to me was a good roll in the hay. I was so out of it I didnt have the where with all to say no. I ended up pregnant with my first son and honestly was so dead inside I didnt even realize that they set up the wedding with the justice of the peace at the courthouse. I was dead. Everything was just a blur until the baby was born and I woke up to realize this man was a piece of dog manure and he had to go.

Over the next 30 years I have had periods of these episodes. One of the worst ones was sitting in my bedroom when the boys were young and I saw blood dripping down the walls and the curtains had faces in them laughing at me. I was convinced the blood was the blood of my boys. It scared me so badly that I never physically spanked my boys again because I was afraid that premonition would come true.

I have also had periods of time where I have left a store or appointment and ended up at home and have no idea how I got there. absolutely no clue. I dont have any memory of the drive home.

When I came home from my meningitis I had quite a long time where my pots and pans talked to me A LOT. And the can goods in the grocery store did too. It was so freaky I couldnt go to the store alone. I also talk to myself in my head constantly when I am alone. I dont know if that is normal or not. My brain never shuts off. My pots and pans and the canned goods isle have finally shut up Im happy to say...lol. It did take a course of antipsychotics though.

 

[BusynMember]

Hmmmmmmmmmmmmmm. But is that disassociation or hallucinations? I have lived with the horrible feeling of not being real or of not feeling like things, like trees, seemed real and it scared the patooties out of me. But I had these symptoms without any hallucinations. I was told they are anxiety symptoms and they did go away when my depression lifted. Very scary though even without hallucinations.

I'm thinking every case is individual. I really think I am prone to developing serious anxiety symptoms of all sorts that other people don't develop and this is just one of them, but d/d is the scariest anxiety symptom I ever had. And that's without losing time or seeing things that weren't there. I did not know that is a part of d/d.

Suz, I wish you good luck. When I look back, I don't know if my family could have done anything because they couldn't control t he feeling I had that nothing was real, including me. But now they have this mindfulness therapy and I think it would have really been useful. I'm going to give you a link to it because I found it amazing and perhaps teaching your son mindfulness can slow his mind down and keep him in the present. If they have DBT in your country, I highly recommend it above all other methods for something like d/d. I find it soothing and productive and I am a very anxious person. Good luck to you and your precious boy.

http://pinterest.com/halfpint53/dialectical-behavioral-therapy/

 

[SuZir]

MWM: What I have read dissociative symptoms vary in very large range. There has been many case reports in medical journals that I have read about dissociative patients that frankly sound loonier than a toon or at least clearly psychotic. Difference is that dissociative person can question their hallucinations and if the trustworthy person calmly explains the patient that hallucinations are not real, the patient is able to believe it. Anti-psychotic medications are also not working that well to dissociative hallucinations than to psychotic and on the other hand dissociative patient can get out of the hallucinations much faster by just calming them up. These cases have been with patients admitted to psychiatric wards so they are of course extreme. But anyway, even in psychiatric wards they at times have difficulties telling apart if someone is psychotic or dissociative so also extreme cases are very possible in dissociative spectrum.

My difficult child's symptoms are luckily much more moderate, but still freaky.

However, back to topic. Those four things I wrote do give me some kind of skeleton on what to ask, but any ideas would be more than welcome.

 

[Liahona]

Some things I would want to know if this were my son is how do I explain this to others? What is difficult child's day like and how am I supposed to act towards difficult child to help him. What actions would make it worse? How do I (or difficult child) talk to other people who are making it worse? Will this ever go away or is this a life long battle? Will it get worse and what are the symptoms those around difficult child should look for? What are the treatment options if it does get worse? What are considered the best practices to treat this and what are the common practices? When difficult child has to trade teams are there any teams that are more flexible with this type of problem?

I'm just brain storming and don't know much about the topic. Some things my difficult child 1 finds helpful when he hallucinates is for me to reassure him that its not real, that it can't hurt him or us, and to stay with him until he falls asleep. He is also on medications to help him sleep.

Maybe explaining to the new psychiatrist that you want info because of the team trade and you are not sure of who is going to be seeing difficult child. This would reassure the new psychiatrist that you are not trying to undermine difficult child's current psychiatrist.

I hope this helps.

 

[SuZir]

Lia, thanks! That was really helpful!

Okay, my list thus far:

- What is a common course of this disorder? Especially in cases similar to my son.
- How many are healed or greatly improved in five years, how many have become chronic or getting worse?
- If things get worse, what is likely to happen and what will be his options?
- What are the warning signs for that?
- How we as parents (difficult child did give me permission to tell his dad about his symptoms and take him with me, as long as I promised only tell him after difficult child left to Tunisia), should react to this? What we can do to help? What we should be very cautious to do?
- How treatment should go? What are the common and/or best courses of treatment? Is there anything we should keep in eye of?
- What resources will difficult child need? If difficult child is relocated, what cities do have resources needed available, what will not have? (This is a small country, pros in any given field usually have a good handle of situation in their field throughout the country.)
- Which kind of environment would be helpful to difficult child and what should be avoided in all cost?
- How this can be best explained to difficult child's possible new team management, coaches and other staff, and if needed to his team mates? What are the things difficult child is likely to need from them?

Okay, I may be forgetting or not thinking something. Ideas and feedback is very welcome.

 

[SuZir]

husband had few to add:
- Why someone reacts with these type of symptoms and some not?
- Does having these symptoms mean difficult child is prone to something else too?
- Is it likely/possible difficult child will loose his touch to reality?
- How likely it is, that difficult child can stay functional or is he likely to end up permanently disabled?
- How often people with this disorder will need to be medicated to zombies?

Okay, those do tell something about husband's fears, I think.

 

[BusynMember]

I know that the kind of d/d I had does not get worse or deteriorate UNLESS I'd be dumb enough to smoke pot. Pot is LETHAL to d/d and often is the cause of it. Yes, that harmless pot. In fact pot often kicks it up. There is an online d/d support group that I checked out mainly out of curiousity having had this long ago. I was surprised at how many posters said that it all started when they smoked pot. Make sure your son understands this. I don't remember if he used pot or not.

I did not have any hallucinations with my d/d so I don't know about the type that your kid has, but I have always been told that actual d/d is not progressive. It CAN be a part of schsizophrenia, but most certainly does not have to be and can exist without it. For me, it went hand in hand with depression.

Heavy medications make d/d worse for me and can actually kick it in when it has been gone. That's why I like benzos. I don't feel doped on a small dose and for me they keep d/d out of my life and I don't like it in my life. If a person is a zombie most likely the person is feeling some d/d symptoms. You would not want to heavily medicate him, I'd think...

 

[Liahona]

What is the chance of easy child having it? Just to reassure easy child that he isn't likely to have it since his experiences are so different.

How would this effect any children difficult child might have?

*Sounds like a good list. Its very good to be prepared.

 

[Dixies_fire]

D/d is also exacerbated by alcohol.

 

[SuZir]

Okay, let's add:
- What difficult child should do or avoid doing to not aggravate his condition?

MWM: I of course don't know if difficult child has tried pot. It is very possible but I'm fairly sure he has never used it with any regularity or a lot. He has been subject of fairly regular surprise doping tests three years now and also pot is tested. Before that his junior team tested boys for drugs every now and then. He hasn't tested positive and he knows it would be huge deal to get caught in doping test. Certainly not worth taking a risk.

With PTSD alcohol (and also drugs) abuse are a huge and common complication, but what I can tell difficult child's alcohol use is in normal range. Much less than most kids his age tend to drink in fact. He drinks rather seldom during the season and also last summer he didn't drink that often. Now that had his vacation time, they did party.end of season, then he was here and didn't drink much, he most likely drank when they were in a ski resort for a weekend but again last week I think he may have had one beer on one or two nights. Of course he is young enough that he likely feels slightly uncomfortable drink in front of me and husband even though he has been leagl a year and half now. But still alcohol is counterproductive for training and he seems to show restrain with that.

I have to not tell your comment about 'heavy medication' to my husband, because benzos were what my husband meant with heavy medication. They are after all our most common and abused illegal drugs around here and ones that everyone knows will mess persons head totally (of course mostly with alcohol but still.) husband does know difficult child has one benzo pill with him in case of an overwhelming panic attack and can live with that. As long as he is not actually using those, but I do know he would freak if he knew difficult child was also given ten mildest oxazepams to help with sleep if needed during his month of vacation. I have to say that I too freak a little about that. I understand his sleep issues are massive and make his situation much worse, but it still feels like giving him heroin for cough.

 

[BusynMember]

I know nothing about d/d and alcohol, but I can tell you for a fact (and you can check it on the d/d site) that many kids who smoke pot ONE TIME suddenly get d/d from it. Also some kids who have used pot already suddenly have a bad reaction to it and get d/d. D/d can last for years and years regardless of how you get it so it's best to never smoke pot and possibly not to drink if you have it, even though that sort of puts you on the outs with your peers. It's sort of like eating a big slice of cake when you have diabetes. It's dangerous for those with d/d. Once you have d/d it's very, very hard to get rid of. I would caution son about the pot. Maybe even ask him if it started after he smoked pot or went on an alcohol binge. Chances are he knows exactly the day he started feeling it. It tends to come on rather quickly. It's a feeling you don't forget.

Pot is not harmless to everyone, just like alchol isn't harmless to everyone. If you have mental health issues pot can be very bad.

 

[SuZir]

MWM: My son doesn't have d/d per se. He does have PTSD. It's common for PTSD patients to have dissociative symptoms. His PTSD didn't come from pot use or drinking.

Some drugs, especially LSD, but also pot, can indeed cause d/d symptoms. So can for example epilepsy. PTSD is also a common cause. With my kid cause is quite clear and it is not epilepsy or LSD.

I don't know what his psychiatrist has advised him about alcohol, probably to be careful with it, because how common alcohol abuse is with PTSD patients. But these are his choices and from what I see, I don't really see a reason to worry much at least now. I also do know that it is extremely unlikely he would risk his dreams just to have a joint. He does know that getting caught from pot is very possible and he knows what that would cost him. I don't need to waste my breath to talk about pot to him. If he decides to use it, he knows he is putting his job, lifestyle and dreams to extreme danger (getting caught would very possibly mean never playing pro again.) Whatever I may say doesn't make a dent in that equation.

 

[BusynMember]

Ok. Good Pot can make it worse. I'm not sure about alcohol. I would think any substance is bad for d/d, but drinking isn't mentioned much on the site. Pot is.

Good luck with the appointment!

 

[SuZir]

MWM, I'm sorry if I came across as being a bit short in my last message. I'm tired, frustrated, angry and sad, so this is not a best day (or week, or month) of my life. And there is absolutely no chance I would ask my son if he did use pot or was in drinking binge and that started his symptoms.

Because he, being difficult child and all that, but also because this is huge, hurtful and sensitive issue, would hear that like this:
"Admit, you did this for yourself. It isn't any traumatic incident outside of your control, but you being a bad kid and doing naughty things and causing this to yourself. It's all your fault and you will now suffer from your naughtiness rest of your life and that is a good thing. If you had been a good son and done as we told, you wouldn't be having these problems."
And that is something he needs like an extra hole to his head right now.

And really, for him d/d symptoms are just symptoms from something else. They are not a problem on themselves, but a symptom of other condition he does have. That is one of the reason he isn't diagnosed with d/d. Diagnosis of d/d kind of requires to make sure the symptoms are not a symptom of something else, but independent problem. And with difficult child he does have a PTSD and these symptoms are just reaction to that. Little like ODD not really being a real, independent diagnosis but just describing a behaviour that usually stems from something else. difficult child's d/d symptoms are just symptoms stemming from PTSD, not independent issue.

 

[BusynMember]

No, you're fine. I think daughter/daughter is almost always secondary to something else.