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after E

rcoursey
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RCoursey13
My son was in a coma with encephalitis,his ammunesystem was attecking his brain,and they gave him high dosiges of styroids.HE woke up after a week,and had to relern everything.after a he went back to school he had proplems with,concentraiting,memmory,anger.The doctors gave him cymbalta,geodan,aricept,adderall,effexor and counseling.He is now 21 and tells me that all this meds has messed him up,that he cant feel anything,and when he does anything strenuesly his whole body hurts and is whorn out for the rest of the day.He says that there is something blocked in his brain,has very bad depression and mood swings.he lives very helthy,no caffiene or cigs.does this sound familliar to anyone,and is there some help for him out there?sorry for the bad grammer,Im german.

Explore topics in this discussion:

Seizures Anxiety Pain Ritalin Memory Encephalitis Depression Nortriptyline

26 replies

WendyStation

hello RCoursey13...
Your son may wish to join this group, so that he can ask questions and learn more from other encephalitis survivors here.
Mood swings were discussed here (yesterday, I believe)... most of us have had (or ARE having) difficulties similar to your son's. We're here to help each other.

rcoursey

He belives that all his problems that he has are from the meds.that he took.not from the E.I have been to a lot of doctors with him and asked for referrals to a neurologist.they just want to give him antidepressents,that he will not take.The docctors just get mad at him and say that there is nothing else that they can do for him.

IngridGuerci

That is why he should join this group; he will see that he is not alone and that there isn't much the doctors can do for him. We will give him support and advice on how to handle things.

Ingrid

rcoursey

Im scarred that it might take away any hope he has of getting better.but then again i know he needs to know what is going on with him.Im just affraid he is going to crash.and how could i make him realize s.o.w.l.y?

WendyStation

Hello rcoursey...

Your son needs to understand that after encephalitis, it is very normal to require medical assistance to deal with emotions!

He needs to know that this medication will not make him giggle uncontrollably, nor will he dance the funky chicken when on this medication... it will just make him feel more normal in his emotions.

MichelleN

I had severe emotional problems and I was afraid to take my med to help my fear. It took a lot to get me to take them and I did find that they helped me a little, but not completely. The doctors wouldn't try anything else until I tried the fear meds.

I don't have the fear as bad, but I still have mood swings because I'm very emotionally sensitive. When I start to get too emotional it's usually because I'm overwhelmed so I go away from outside input until I don't feel so overwhelmed.

I hope your son can find something to help.

Michelle

DVirginia

My son was 6 when he had E - he's 8 now. He had uncontrollable rage that was making our day-to-day lives overwhelming. He had migraines, stomach pain, anxiety, and seizures. We've gotten the seizures mostly under control, but the emotional issues took much longer to work on. He's been seeing a psychologist weekly sincee September. He takes nortriptyline (an anti-depressant that is used for anxiety/mood issues, as well as for migraines).

I guess we're lucky that he's young enough that there is no stigma in his mind about taking an anti-depressant. For him it's more about - why do I have to take medicine every day and none of my friends do? So, getting him to understand that it's important is tough. But, once he started to feel the effects of the nortriptyline, he realized how much he needed it. He has said recently that if he stops taking the medicine he will become angry again.

rcoursey

we have been to the doc.today.and she finally gave us a referral to a neurologist. "THANK YOU LORD" I have been getting him used to the thougt that a lot of his problems are from the E. Has any of you taken as many meds as michael has?and does it really feel that numb?

Joey_sMom

In my unprofessional opinion, it sounds like your son suffers from common residuals of encephalitis. It is not uncommon for survivors to experience fatigue, decreased stamina, memory/concentration disturbances, anger or depression. People often "blame" medications when they do not get the desired results though.

Apparently your son has been tried on several anti-depressants and a medication commonly used to treat ADHD (most likely given to him in an effort to treat the concentration problem you mentioned) without achieving the desired results. My son also struggles with depression despite taking an anti-depressant.

When you say he feels numb I am unsure if you mean emotion wise or literally a loss of sensation, though anger and depression would indicate he is not numb emotion wise. My son has problems with intermittent numbness (tingling and loss of feeling in his arms and legs) but it is related to seizure activity.


Let us know how his appointment with the neurologist goes. I've found my son much more open to suggestions from his physician than from his mother. LOL

Vicky
Caregiver

Debe

Rcoursey. Please encourage your son to check out this group. I joined for my sister. She is not skilled to use a computer. She had her E as a toddler. At age 55 she finally met Wendy, Ingrid and a few others meeting these people helped both her and I understand her disability.

This is a fantastic group. Also check out surviors plus. There are some good caregiver and survivors on that site also.

rcoursey

first of all I want to thank all of You for Your responses and support.It helps so much just knowing that someone actually cares.I have been telling my son about this site a little bit more every day,and that a lot of his problems are from the E.He says that before he took all them meds he could at least feel(emotion) something.I think the only thing he feels the most is frustration and anger.He very seldem smiles.He had E/ADEM when he was 13 and is now 21 we have been send to all the wrong doctors until now.I dont know when his appt. is jet,still waiting for them to call me. joe s mom! if you dont mind me asking how old is your son?

Joey_sMom

My son is an adult, 25 years old when he contracted E and is now 31. Your situation made me recall that I was at one point concerned that Joey "expressed no emotion or initiative". His doctor told us about something she called "brain shearing" that could be the cause of his inability to initiate things and apparent total lack of emotion. They tried a short course of a commonly used ADHD drug (Ritalin) on him at that time and it did help.

However, if your son shows frustration and anger, he absolutely feels emotion (he is more likely trying to say that he never has any good feelings like happiness and excitement). That leaves you stuck in the same position I am now, trying to figure out how to deal with all that anger. Definitely not a fun ride!

Vicky
Caregiver

rcoursey

Thank You Joey's mom,you hit the neal right on the head.Has your son been to a neurologist?or a neuropsychologyst,and has it helped any?It sounds like Joey and Michael have a few things in commen.Maybe they can become friends.Can your son write on the computer?I think it would help michael alot to talk to someone who understants. He does not have any friends.the computer is his friend,he has a hard time holding up in a conversation face to face. Caregiver Ramona

MichelleN

Rcoursey, I didn't know I didn't smile, but I was told after months of knowing someone that they were excited because I smiled. Come to find out I didn't smile or have any control over facial expression.

When I was constantly angry and scared I barely left my room and then it was when I was forced. When I got more used to going outside my room I stopped being so angry, but the fear took much longer to get rid of. Even when I was terrified I didn't show enough emotion that anyone knew.

I tend to stay on the computer very often with my e-mail friends. I found it much easier to be around people older than me, but now I have friends in the "real" world that are only 5 years older than me. The older people tended to be able to forgive my not remembering things. People in the "real" world tend to take awhile to get used to my memory problems where in the internet I can change things.

Michelle

DVirginia

I'm a firm believer in seeking out specialists of any flavor you have available to you - then you can slowly work your way to a solution (well, as close of a solution as you can get with the residuals of E). My son sees a neuropsych (once a year for testing), neurologist, psychologist (weekly), and psychiatrist (every two months). My son recently starting having seizures again and it was really cool to be able to bounce my questions off multiple docs. When they were all giving me similar answers, I felt like we were on the right track for next steps.

It was hard coming to the realization that all of these doctors can help (and it's an ongoing effort to convince my son that he needs them), but for us, at least, it's given us great comfort to know that we have this great pool of doctors to learn from. Now, my son looks forward to seeing the psychologist each week. She's helping him learn how to appropriately express his feelings. His empathy is coming back. And, he doesn't think the entire world is against him anymore.

Good luck - I'll be sending good thoughts your way.

DVirginia

Oh - and I should add - that being part of this group is the other big piece of the puzzle. I can bounce questions off of the group and get ideas of questions to ask the docs I would never think of on my own. It's awesome!

rcoursey

Hi Joey's Mom, I have been going through this site and reading some of the storys,when i came acoross one where you was talking to tinydancer on april 9.You sayed the same thing tha i had sayed to you-hit the nail right on the head- creepy,isnt it?lol

Joey_sMom

LOL....deja vu Ramona

It would be great for our sons to correspond, especially since they have so much in common. Joey can use a computer, though in the past I have had no success in getting him to come to this website. Perhaps they could exchange e-mail addresses and talk that way. He is a bit under the weather right now, but when he is feeling better I'll talk to him about it.

Interestingly enough, I had managed a neurology clinic for several years when Joey contracted E. He had a neurologist when he was hospitalized and after the Army sent him home to us he began to see one of the neurologists that I worked with (he is an epileptologist). He also has routine appointments with a psychologist, a psychiatrist, a speech therapist and an occupational therapist. And, he has seen a neuropsych for testing several times. In fact he is scheduled for 5 hours of neuropsych testing on June 4th.

The neurologist has been a blessing, reducing his seizures by leaps and bounds. He also gets real benefit from his psychologist though he remains quite angry. The neuropsych testing has given us insight into the areas he has the most problems with and ways to work around them, but they always upset Joey. I am not looking forward to Thursday at all.

Have you joined the Caregivers4Enceph group?

Vicky
Caregiver

rcoursey

The doctor called me back on friday and told me that he doesnt give referrals,after the nurse prac.and the insurence have allready aproved it.I'm sooo frustrated.I can just imagine how michael is feeling.Has anyone else had this many proplems?I'm living in the great sdate of TN.

rcoursey

Just an update, My husband took michael back to an other doctor,and took some papers from this site.And they actually agreed with him.They are going to make him an appt.I,l find out tomorrow. Thank's to this site!!!!

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