Advice needed in dealing with teenage son

[Gwendo3]

Hi, my name is Gwen and I am a parent of a 19-year old son, Matthew who has had seizures since he was 9.5 years. His seizures were somewhat controlled with meds over the years and he had brain surgery in 2005 to put in grid to map where seizures starting. It was determined that seizures were coming from the communication center of the brain and the docs did not want to remove seizure focus because it was possible he would not be able to communicate if seizure focus was removed. It has been exhausting and a major strain on our family. Now, the problem is he is refusing to take his meds on a regular basis for over a year now and has been hospitalized several times. The docs also diagnosed him with psychosis which seems to have started because of seizures but if he does not take meds for psychosis, he refuses to take epilepsy meds. Does anyone have suggestions on how to deal with this???? It is so frustrating and we don't know what else to do.... since turning 18, if he refuses medications at the hospital - they don't force him and as parents, we can do nothing. Any suggestions would be welcomed.

[skillefer]

Wow....well Gwen, have you asked him why he doesn't take the meds? Sometimes kids rebel. You said the doctor's said he was suffering from oa form of psychosis.....is there any way that you can take that document to the court and be assigned conservatorship for him? It might give you a say in his medical treatment.

[Georgiagirl88]

Hello there!

So sorry about your son's troubles. Why does he not want to take the meds? Does he give a reason? Is there a Doctor that could speak to him and explain how important it all is? I can see where it would be difficult especially when he is having psychosis and not thinking as clearly as normal and being over the age of 18. There may be some other folks here that have run into the same troubles. The only thing I can think of is since he absolutely needs to get the psychosis under control and in turn the seizures..is there a way he could be hospitalized to get things under control? Just a few thoughts. I sure hope everything gets better for him soon. Best wishes!

Michelle

[Nenne]

When i was teenager i did the same, stopped taking meds and so on, it lasted for about 2 years and i was of course getting sicker and sicker and i did not of course realize it because i was in what i call "the fog"

One of my friends has something called CF she had also of course stopped taking her meds, but when it comes to people with CF it goes much much quicker, One day she ended up in hospital really sick, and thats when hit me, This is where im gonne end up soon. The next day i called the doc and started on meds.

When i think about it for me it was away of trying to be "normal" i was just sick of always being different and i somehow i got in my head that if u just stopped taking meds i would be like the rest, if i was i would let him talk to somebody in his own age with it.

[RobinN]

A few suggestions...

Unfortunately, physicians tend to dismiss psychiatric patients for several reasons. There is a tendency to assume that all psych patients are just "nuts" without "real illness". Physicians are often uncomfortable around patients who are obviously depressed or who are acting bizarrely, or who they are afraid might act bizarrely. At times these patients behave in ways that make evaluation more difficult, either by being unwilling to give a full history, unable to give an accurate description of symptoms, or too frightened to allow a full physical examination.

http://www.alternativementalhealth.c...es/diamond.htm
(good suggestions midway in this article)

http://www.alternativementalhealth.c.../aspartame.htm

The brain is a chemical factory that produces serotonin, dopamine, norepinephrine5, and other brain chemicals 24 hours a day. The only raw materials for their syntheses are nutrients, namely, amino acids, vitamins, minerals, etc. If the brain receives improper amounts of these nutrient building blocks, we can expect serious problems with our neurotransmitters.

http://www.alternativementalhealth.c...s/pfeiffer.htm

http://sulcus.berkeley.edu/mcb/165_0...ipts/_980.html

http://ezinearticles.com/?Fish-Oil-i...osis&id=393536

http://www.hriptc.org/

Neurofeedback Research:
http://www.eeginfo.com/research/bipolar_main.html

The UK research team studied 12 children, with an average age of about 6 years, who had developed normally, according to their parents, and then lost an acquired skill such as language. The team reports that all of the children were found to have intestinal disorders. Nine of them were also diagnosed with autism, one with "disintegrative psychosis," and two with "possible post viral or vaccinal encephalitis." In eight cases, according to the report, the parents or the child's physician noticed problems soon after the child received the MMR vaccine.

http://articles.mercola.com/sites/ar...to-autism.aspx

http://articles.mercola.com/sites/ar...tic-drugs.aspx

Not that this helps, but the research is interesting:
http://www.ncbi.nlm.nih.gov/pubmed/1...?dopt=Abstract

[BuckeyeFan]

Welcome to CWE



You do have a difficult issue to face. I have ran into some of the same with my 75 year old mother, but nowhere near to the extent you have. He is at a tough age turning into a man with little control over his future or even his mind at times. It must be terribly frustrating, confusing, and scary for him.

I am a 47 year old man and I admit there are times I just want to chuck my meds as well. You just get so tired of fighting epilepsy and I guess the meds are one of the few physical links that you can control. I am sure you will read of many others who have wanted to throw out their meds as well.

A couple of suggestions.

First, ask your son to visit this website or any other epilepsy site to learn more about his epilepsy. Knowledge of the condition can sometimes alleviate fears and anger. (plus this is a pretty supportive group)

Second, when talking to him, try to put yourself in his shoes and see things from his perspective. Listen to what he says from his viewpoint, not yours. It probably makes sense to him, even though it does not to you.

Third, help him explore other treatment options. Maybe if he sees that there is a chance he may not be on meds the rest of his life, he will take them. Though I am fairly well controlled by meds, alternatives exist and new research is moving forward every day. Many treatment options are discussed on this site and many other sites as well.

Last, let him know that you love him no matter what. Guys have egos and may not let you know they need that hug. Give it anyway. It appears that you love him very much, otherwise you would not be here looking for help.

Good Luck from Ohio

[RobinN]

According to psychiatrist Dr. Richard Kraus, who researched prison populations with violent behavior, it is important to understand the link between nutritional deficiencies, mood and brain function. Many of the symptoms of emotional volatility have been linked to deficiencies in certain B vitamins and minerals, especially zinc. Kraus recommends a daily minimum of 100 milligrams of B6 daily, 400 micrograms of folic acid and at least 50 micrograms of B12 with a multivitamin/mineral supplement to inhibit the above symptoms.

Also, a new biologically activated form of zinc, when coupled with neurofeedback training, has demonstrated a calming effect on hyperactive individuals, with a reported reduction in headaches and stomachaches in a matter of 72 hours.

http://www.toacorn.com/news/2007/072...lness/058.html

[RobinN]

The adrenals produce excess adrenaline and cortisol, not to mention a relatively unknown neurotoxin called adrenal lutein. Adrenal lutein kicks into the liver, creating another neurotoxin called hydroxy5kryptopyrole (causing a stomachache), which delivers to the thyroid (producing a burning throat or throat-ache) and then to the brain (creating a headache). This all happens in about 15 seconds. Research indicates that it takes at least eight to 24 hours for the body to neutralize these harmful, self-made toxins.

According to psychiatrist Dr. Richard Kraus, who researched prison populations with violent behavior, it is important to understand the link between nutritional deficiencies, mood and brain function. Many of the symptoms of emotional volatility have been linked to deficiencies in certain B vitamins and minerals, especially zinc. Kraus recommends a daily minimum of 100 milligrams of B6 daily, 400 micrograms of folic acid and at least 50 micrograms of B12 with a multivitamin/mineral supplement to inhibit the above symptoms.

Also, a new biologically activated form of zinc, when coupled with neurofeedback training, has demonstrated a calming effect on hyperactive individuals, with a reported reduction in headaches and stomachaches in a matter of 72 hours.

http://www.toacorn.com/news/2007/072...lness/058.html

[stilldancing_98]

What we are "diagnosed" is not always correct. You know your son best. I did the same thing when I went thru my teenage years. How would you like to be a 19 year old male becoming a man , and wanting to be normal in every way. What if the meds could be bugging him sexually? He prob. wont tell his mom. It is tough. I ended up in the hospital many times. I just got a lot of support from my mom and counelors, the more you talk the better you feel.

[brain]

Gwen!

Welcome to CWE! I can see you are from MD, and I'm
wondering if you've consulted with your local Epilepsy
Foundation chapter there for advisories as far as your
son's condition goes? I'm sure they can provide you some
intervention or at least speak with him or assist him in
some way.

In addition, has he ever been to a Level 3/4 Hospital?
Since you've only remarked the Doctors have declared
him with psychosis due to where the seizures are originating
from - there are some legal liabilities and issues there for
he is putting himself as well as endangering himself when
he's not taking his anti-epileptic drugs.

I'm wondering if he's mentally stabled enough to realize
this? Or if he's sustained some type of brain damage(s)
where he's not mentally capable of making the right
decision(s)?

I have some brain damages myself; hence why at times I
rely on my son to make decisions and to go over things,
for I am not really "safe" to live alone and I will admit to
this; no matter how hard I try to stay safe, I'm still at a risk.

If it is truly effecting and affecting your son, then you as a
parent do have a right to have a court to intervene on his
welfare. But has he ever been seen by a Social Worker?
A Psychologist? A Psychiatrist? What does the Primary Doctor
have to elaborate overall on this? (After all he/she is the "Over-
seer" of the patients overall well being, even over the Specialists)

If you've not spoken or discussed this with the Primary Care, then
I recommend you to speak with the Primary for advisories and
recommendation.

I do apologize if my post is somewhat disorientated; I've been
bouncing like a Yo-Yo with seizures myself too.

[stilldancing_98]

If he is just not taking his meds now then it sounds like a choice to me. And I had the grid and brain surgeries. Ask and I say Ask because it shows respect on his part. Ask him if he wants to go to a group with other people his age with epilepsy. He will have more repspect for you to. The more its out in the open the better he will feel. He is allowed to feel the way he feels. Its only right. But he is an adult now. Oh my heart goes out to you. He will come around as long as things are open. I think. As I said . You know him best.

[RobinN]

These were some of the toughes years with my boys.
There is hope that it will get better with time. You need a support system to get through it.

[kayakmom]

Gwen, my heart truly aches for you!! MY son is 17 and has been through very deep depression as well as seizures. 10 years of epilepsy and at least 3 of depression. We nearly lost him to the depression 18 months ago. He has a website for teens and young adults about depression called preventing teen tragedy based on what he has been through. I dread the 18th birthday for just what you are going through now!

I am here to listen and help in any way....I think the powerlessness and lack of power you have as a parent is just wrong! Doctors should have a way to help work with the parents as well as part of the team. I ahve talked this through with my son already as far as working things out on paper NOT to keep him from independence, but to have us as part of his medical team when he is unable to speak for himself. It is the depression we do not trust and we tell him this....He understands and during good times he knows and says he needs us on that team. He also has learning disabilities that make it unclear how much he can understand in his care. We have been diligent in the last 3 years in teaching him to self advocate for his own care and participate in each step. Sometimes he will other times he tries to back off. He still does not always remember what medications he takes or do the communications with the doctors. I make him take part anyway. The worry remains that he will be forced to take it all on and not be as capable as he NEEDS to be and we will not be allowed to help as he needs. He can shut us out if he wants during bad depressive times. Very frightening .....

THere are limited durable power of attorney's that you can draw up for Medical needs. If your son is diagnosed as Psychotic, do the doctors feel he is not capable of his own decisions, find out if he needs a health advocate. If you can be this for him.

Best wishes
Ginny