Very worried.. please help!!

[Fall54]

Ok, let me first tell you this is kind of a long story but I need to tell you all of it. I posted earlier this week about my brother's confusion and having problems keeping complete thoughts. Things have become worse!!

Saturday my brother drove himself to the hospital thinking he was going for a chemo treatment. Apparently what he was going for was a shot to due with his platlets being low. He checked in and got himself a glass of water and then sat to wait.... From there things changed. He got up and went over to the supplies and started to put on the gloves they use in the hospital. When the nurse asked what he was doing he said he didnt know. She then asked what he needed the gloves on for and he answered( this is not something my brother would ever say) I thought we were going to have relations. The nurse said "I dont think so!!" She said he was acting very strangly and called for security and some other personal. She also called my brother who lives in the next town over and asked him to come in as Alan was acting strangly. Alan then went to the desk and started to take out all his money and was trying to pay them and kept saying he needed to pay his bill. There was no bill and he was told that. They asked him a lot of questions and he didnt even know where he lived. Luckily his oncologist was there and witnessed the whole thing. Alan was immediatly sent for a cat scan and blood work. Cat scan was negative and blood work was good except his liver enzimes were up and his platlets were down. His electrolites were fine. When he returned from the testing his DR and both my brothers and Alan's wife had a meeting. The DR asked my brother what was the last thing he remembered. He remembered driving there, checking in and getting a glass of water, the next thing he remembered was talking with security. Alan's wife had not been called as she has a lot of problems and has a very poor thought process herself and terrible memory and on many many medications. She, too is diabled. When they called my brother Gary they told him they were not sure who to call and chose to call him because they needed someone there that could understand and remember. Alan's wife just happened to call to see if he was through with his chemo yet and came in after she was told then. The oncologist told Alan he had had some type of episode and they were not sure of it's cause. They asked him when he had taken his meds and he said 9 AM, this happened at 1PM. they said it was in no way medication related. My Brother Gary went on to tell my Brother Alan some of things he had done and said and Alan was in dibelief.Gary told him that he had taken all of his money out etc and asked him if he had all his money. He reached in his pocket and out came a handful of gloves. Alan was shocked and afraid. The nurse there said she was scared and had never seen anything like this all the time she has been an oncology nurse. They told him he was not to drive as he may have had a seizure and it was very dangerous for him to be driving until they found out what had caused this.

They have changed his chemo to once every three weeks vs 2 weeks on and 1 week off and the type. I still do not know what kind he was having or will have, but plan to call his DR on Monday. He has to take some sort of medication twice a day for 3 days ( the day before chemo. the day of, and the day after) They have also set up a ecg??? to check for seizure activity but that will take a few weeks before he has that.

When Alan returned from having the cat scan and blood work the episode was over and he was fine.

I know my Brother and he will continue to drive putting others and himself at risk, as his DR said if this happened again while driving he wouldnt even know he was driving. We are so afraid! We are also afraid that if this happens again, he may take medication that he shouldnt or who knows what he may do not knowing what he is doing or saying.

I told you this was going to be long!!

It is the blind leading the blind at his house and a very bad marriage to boot. Alan wants his independance and that is why I think he chose to give his wife another chance rather than coming to live with my family. SOMEONE needs to be in control of his medications, appointments etc and he does not want to give up that control which I understand, but this HAS to be an eye opener!!!

We are at a loss as I live 3 hours from him and provide a home for 3 mentally handicapped men as my job and have done so for over 15 years. My husband does it too so it is well managed.

The problem is we want more for Alan than he wants for himself, and we are so worried.

How can we help him?? He shuts us out or should I say tunes us out when we are saying things he doesnt want to hear but he has become a danger to himself and others.

Alan is the sweetest guy you could meet and has the biggest heart and is so loved by his family of 4 brothers, 3 sisters and his Mom. Gary is the only one that lives in Maine, the rest of my family lives in NC and I am here in NH. Alan would only come to live with me and I know that to be a fact but has to understand and accept the fact that he needs us now. At some point ( because I beleive in miacles) maybe he will be able to manage on his own again but now is not that time.

Q I have never heard of having a seizure and walking around and talking during it. Has anyone else??

Q The liver ezimes being elevated means there has been growth.. is that right?

Q What are we to do????

Thanks all for bearing with me through this saga and I will appreciate anyone that posts .

God bless you all.

Jane

[janet]

Jane,

Has he had a brain scan? maybe possible mets to brain? It could explain his confusion. I would insist on it asap, as it can be treated.

take care,

janet

[Guest bean_si (Not Active)]

Jane, I'm sorry I am as confused as you are. I'm sorry he is back with his wife. That surely doesn't sound good.

As to the higher liver enzymes that could mean many things including that the liver is processing something toxic. You say he said he didn't take any meds since the am but maybe he forgot and took some morphine and then a little more morphine haven forgotten he took the first dose. That could set up a situation where he would behave unlike himself.

To me, it sounds as though there was something toxic happening in his body that affected is central nervous system but not brain mets.

This most be terrifying for you. I know it is the one thing that terrifies me - that I will have brain mets and no caregiver. I am so amazed at the caregivers here I have no words. If you could only know how much of a difference you make in someone's lives.

I will pray for your brother and for you.

[janet]

I still think the brain scan should be done to RULE out mets. At least you will feel more comfortable knowing it isn't that. And if it is, it should be attended to immediately. The first sign we had of ANYTHING wrong was my Dad's confusion, and headaches, which he said weren't horrible. It was after they found the brain tumor that they went searching for the primary, which they found in the right lung. We were shocked to say the least to find out that he had lung cancer, had absolutely NO idea he could be so sick and still functioning very normally. Please for me, check it out.

thanks,

janet

[Jana_W]

Hi Jane

It sounds like you've been going through a very frightening ordeal and my heart goes out to you. I was wondering if they had checked your brother's blood sugar level (I am assuming they would have) as either hypogylcaemia or hyperglycaemia can cause confusion. I am also aware that my Grandpa used to behave very, very erratically when he had been given morphine, so am wondering if your brother had some kind of reaction to any pain meds he may have taken (or indeed, any meds of any description). You asked about the elevated liver enzymes meaning the liver tumour has grown. I do not know the answer to this, but I don't think it means the tumour has necessarily grown. I used to work in a hospital pathology laboratory in biochemistry. The elevated liver enzymes are basically indicating damage to the liver, which could be from the tumour, but it could also be from the various medications he is on that are toxic to the liver also. I am sure the doctor could answer these questions for you so I would ask, and I would definitely make sure they investigate this episode your brother had. Don't let them just ignore it.

I hope you are looking after yourself. Am thinking of you.

Jana

xxx

[Guest bean_si (Not Active)]

Oh, Jane, you mentioned never hearing of a seizure where a person walks around and talks. I believe that this is a type of temporal lobe seizure and yes patients are awake during this time. After having my ruptured aneuryism and major stroke I did some research on seizures and strokes. There are even seizures where you just quietly stare for a few minutes, oblivious to others. That's petit mal seizures.

I have heard some chemo drugs cause seizures. If it is from something toxic (including chemo) it should stop when the toxin is withdrawn.

Just a guess. I don't know. I just heard you calling for words and I left some. I wish I could leave a hug instead.

[Jana_W]

Hi Jane

It sounds like you've been going through a very frightening ordeal and my heart goes out to you. I was wondering if they had checked your brother's blood sugar level (I am assuming they would have) as either hypogylcaemia or hyperglycaemia can cause confusion. I am also aware that my Grandpa used to behave very, very erratically when he had been given morphine, so am wondering if your brother had some kind of reaction to any pain meds he may have taken (or indeed, any meds of any description). You asked about the elevated liver enzymes meaning the liver tumour has grown. I do not know the answer to this, but I don't think it means the tumour has necessarily grown. I used to work in a hospital pathology laboratory in biochemistry. The elevated liver enzymes are basically indicating damage to the liver, which could be from the tumour, but it could also be from the various medications he is on that are toxic to the liver also. I am sure the doctor could answer these questions for you so I would ask, and I would definitely make sure they investigate this episode your brother had. Don't let them just ignore it.

I hope you are looking after yourself. Am thinking of you.

Jana

xxx

[Fall54]

Yep!! I'm still up!! As for the morphine .. he doesnt take it. it is a morphine patch that is changed every 3 days (75 mg). I thought my brother Gary told me that after the cat scan they said his brain was okay. But I am confused as I thought that a cat scan only scanned below the neck. I will have a ton of questions for his DR thats for sure. Thanks for the info about seizures. I have 3 disabled men that I care for and 2 of them have seizures but are non verbal so I have only seen the grand mal ones. I am one confused and concerned Sister!!

[Guest bean_si (Not Active)]

Jane, it's the PET scan that only does below the neck. That's because it identifies cancer by uptake of sugar/glucose and the brain naturally is filled with glucose so the PET scan couldn't differentiate between normal and abnormal cells.

For the brain, there is either MRI or CT Scan. As I have metal in my skull, I have to settle for CT scan. The MRI was developed, in part, because the CT scan was considered inefficient as a dx. tool. However, in the past ten years, the CT scan has evolved trremendously. For the brain it is an excellent dx. tool. It seems that is showing there are no mets to the brain.

You're tired, kid. About time to hit the sack I hope.

[Fay A.]

Jane,

Liver enzymes can be elevated for several reasons, but the first thing that came to my mind was chemical hepatitis possibly brought about by drug intereactions from some of the medications your brother is taking. (drug interactions can occur between over the counter meds, as well as herbs, alcohol, cleaning products, solvents, there's a long list).

Anyway, a symptom of chemical hepatitis (and other serious liver impairment) is delusion.

I'm not a doctor, Jane, but I would pursue this, along with the MRI of the brain to rule out brain mets.

[Haylee_38]

Jane I am so very sorry and know how hard it is what you are going

through. I was the care giver for my mom and she became very

confused and would talk out of her head. She would say really off the

wall things. One time she asked my daughter why she called the garbage

men to come get her. She asked my husband why he hides under the

bed. She asked my 12 year old { at the time} to give her a bite of her

lip gloss it looked good. etc..... The nurse from hospice told me in early

Jan. 03 this was a sign the cancer had went to her brain and it was

getting close to the end. Then a few days after that visit she was out

of it I woke up and she would just sit and pick at her gown and say

nothing . I called hospice and they took her in telling me that I needed

to call my sister in Vegas and brother in South Carolina and my other

brother who lives in the same state as us Ohio but in another city.

We were told by the doctor at hospice { this was on a Friday} she would

be ver lucky to make it until Monday. I was talking to my brother who is

a nurse and his wife also a nurse about how this all came about when

hospice put mom on alot of meds. Mom was in a coma at this point and

had always been content on tylenol 3 until hospice came in and said

they did not allow a cancer patient to only be on tylenol 3. They had

her on alot of meds. including the morphine patch and ativan in which

the hospice nurse doubled what the doctor had ordered. My brother

began to wean her right there in hospice. By Sunday she was coming out

of the coma yet remained abit confused. Tuesaday she came home and

did not remember a thing of what had happend. She was alert and

remained alert until March 03 when she passed away. She went back

to tylenol 3 until the last week she was put on the liquid morphine. I

really can relate to how hard it is to see someone you love so much

being in such a confused state of mind. It can be dangerous as well I

One night she got up in the middle of the night and wanted to play on

the pc something she had never did before. She went to sit in the chair

and fell. Thank goodness she only had a bruised arm from the fall and

my oldest son came in and found her. My thoughts and prayers are

with you and your family. Haylee

[kimblanchard]

Re: the new chemo with something he had to take the day before, the day of, and the day after - that sound exactly like what Jim had last.

That drug he took for the three days was Dexadron, a steroid, to help prevent a reaction to the chemo. The chemo was Taxotere for us. It could be that is what your brother is scheduled for.

If the oncologist and/or the nurse were witness to what happened, maybe they could suggest a better course of action to your brother. I know my parents listened to doctors when they wouldn't listen to anyone else.

Best of luck to you. Be sure to let us know what happens.

Margaret in Iowa

[berisa]

jane, my dad's case is not exactly the same as Alan. So I can't simply relate both having similar problem.

But I can tell, my dad had restless legs during his second round chemo, the symptoms were, keeping on doing things and keep himself busy, insomnia, some paraniod delusions. These symptoms were gone in one week by taking some mild psycharist medication. Still until now, I don't know the reason why that happened and what triggered it.

Afterwards, starting from this February, he had the relapse brain tumor, since he had headache that the oncologist injected the maximum dose steriod to him. The other day night, he was hyped and then started to see weird things happened that normal people must think he is crazy. One to two days later, he had so-called "Paraniod Delusions" that thought we are all killed and daughters will be raped. This is steriod-induced mental problem. He then met a psycharist and had medications. Things were better and in control then.

loss of Short term memory is happened on my dad during the last year. We always take care of his medications taking that he had no problem in taking wrong medications in wrong time. A real caregiver is really important to Alan. Some medications must be taken on schedule.

I also second to have a brain scan / MRI for making sure he has no mets.

Keep us posted.

[Fall54]

My brother went to the hospital today as he was again very confused and talking about things that didnt make sense. He is scheduled for a eeg tomorrow. He needed to be transfused again with 2 units of blood. He had 2 units about a month and 1/2 ago too. I was told today he was very short of breath, grey looking, coughing alot and had terrible muscle spasms again. He wont be able to have his chemo that he was due to start tomorrow ( new Chemo). We are just so worried!!!! Please pray for him! God Bless you all.

[TBone]

Hi,

I am so sorry that you are going through all of this and I am praying that something will be found to help him and soon.TBone

[stand4hope]

Oh, Jane, I am so, so, so sorry for what you are going through. I am also sorry for my delay in writing to you; somehow I missed this post. Your posts project your feelings of helplessness right through cyberspace. I don't have any answers or advice, but I think a lot of good ideas for things to look into were given here. From what I understand, the hardest part for you is his rejection of help or advice. I know that can be very frustrating; it just makes you want to lay down and bawl your eyes out. You also must be terribly disappointed that he went back to his wife and didn't come and stay with you. I remember your earlier posts when you were so excited about him coming to live with you so you could be his caregiver. Again, I am so sorry. Hang in there, sweetie! You sound like such a dear, sweet person. My goodness, you even take care of other men that are handicapped. How comendable that is. I wish I could give you some words of comfort for not being able to be more involved with your brother's care. Like Snowflake always says - go have a good bawl in the shower. I haven't tried that yet, but it sounds like good therapy.

God bless you, Jane,

Peggy

[MayFrog]

So sorry, Jane, for all the frightening and confusing events going on with your brother right now. The EEG will look for any suspicious brain activity that could signal a seizure disorder, but I would press very hard for the Brain MRI to rule out mets.

If his behavioral changes continue, and his actions become dangerous to himself and/or others (such as driving)....it may be time for your family to get together and consider asking for a conservator to be placed in charge of your brother's medical care (this could be a family member such as yourself). I don't know you or your brother's situation well at all, and I don't want to overstep my bounds, but from what I read, his wife has many problems of her own and doesn't seem to be in a position to positively influence or care for him properly.

My heart goes out to you and your brother...this beast is hard enough to deal with when things are going well. All this added worry must be terrible for you. Please know I'm thinking of you both, and wishing that things work out well and a diagnosis/treatment plan is found for his behavioral changes.

Bless you both.....Mary

[stand4hope]

Mary's idea is a very good one about getting a conservator (guardian) appointed, but you mightl have to see an attorney and have statement from your doctor that he is incompetent or in need of services, etc. - it depends on your state laws. In Indiana, it usually isn't very expensive to get this done and is a pretty easy process as long as the doctor signs off on it. Even if his wife or anyone else contests the guardianship, it's usually just a court appearance and the Judge decides on the spot. In Indiana, there are two types of guardianships - one over the person and one over the estate (or a combination of both). Maybe his wife wouldn't complain too much if it was just over his person. This is not meant to be legal advice, I'm not a lawyer, just a paralegal, but it's worth looking into.

Good luck to you, Jane.

God bless you,

Peggy

[Guest Billie]

Jane,

I'm sorry I have no words of wisdom here. I've had no experience with what you are going through. I can only offer my hopes and prayers that you will find an answer to help your brother through this. It sounds as though the advise from some of the others here may help you. I hope so.

Billie

[john]

I hope things work out. I'm not a doctor but it might be the liver or glucose levels. My mom I heard acted strangely, once they gave her glucose at the ER she was better.

Though they should have seen this with his blood work.

If the liver isnt functioning well it can lead to bizarre behavoir. Ammonium does not get removed by the liver and I think can cause confusion

I think protein should be restricted and fat.

Protein is broken down to ammonia that can not be removed by the liver. Also the liver helps breaks down fat, so avoid fat. I think this is true, but ask a Dr

http://janis7hepc.com/Your%20Liver%20Functions.htm

Hepatic encephalopathy: In this condition, toxins build up in your bloodstream because your scarred liver is unable to rid them from your body. The toxins can cause you to behave bizarrely, to become confused, and to no longer be able to take care of yourself or others.

[Fall54]

Thank you all again as I have learned a lot from your posts and feel your concern. You are a wonderful family of friends and I am blessed to know you all in even a small way. God Bless you all.