New to this - and I mean completely new to this

[phoebecat]

hello,

I am the mom of a 42 year old mentally retarded man with left frontal lobe complex partial and clonic seizures which started when he was 7 months old and really have never stopped. I have no idea where to begin, so...

He is currently being weaned off Depakote ER and adding VimPat - very slowly - it will take until Sept. He takes Lamictal and has a VNS.

I am interested in "listening" to folks describe how they feel on these drugs and other drugs and gather info as my son is not able to articulate how he feels. He doesn't really understand - he's mentally about 4-5 years old - give or take - so I help him. I am his guardian and agent. I think he has some whopper side effects and paradoxical reactions to some drugs. Anyway - not much to say as I have never done this before - so - later, I guess

Thank you all.

 

[Endless]

Phoebecat,

Welcome - this is a place with a boat load of knowlageable and supportive folks. I've learned a lot from them.

I'm so sorry you and your son are going through all you are going through. It's got to be tough. I don't know anything about Depakote and vimpat. But I have gone through withdrawl from 3 anti seizure meds. Two of them it was relatively easy (Keppra, Topamax). Lamictal withdrawl was very difficult for me, with low blood pressure and a high pulse rate, and many times more seizures than normal.

I think everyone is different when withdrawing from different drugs. If your son is experiencing something that is unusual, call your doctor. He/she can give you an idea when to really worry, and what's just part of the process.

Hang in there.

 

[phoebecat]

wow thanks for the thoughtful reply (esteemed pillar orca whale person)

I am taking him to the neuro tomorrow - his throat is itching like crazy (I think) - but this itching started in Nov and the VimPat started last month -so it is very confusing for me and hard on him - but we are tough and have gotten this far - sometimes it is hard to get a doctor to take the time - know what I mean -

thanks for the welcome - I am all ears and appreciate the info and warmth - )

 

[Birdbomb]

Welcome phoebecat

You'll find this a very warm and caring place. How long has your son had his VNS? Since he cannot articulate his side effects do you have any problems deciphering if the side effects are from the VNS as opposed to his medication?

 

[Nakamova]

Hi phoebecat, and welcome!

It can be hard to know what to blame on the meds, especially if you're on more than one. And side effects for one person aren't necessarily the same for another. I'm on Lamictal myself, so if need a sense of its side effects let me know. As for the Vimpat, others may chime in, and you can also search using the tab at the top to see if others have commented on it.

Best,
Nakamova

 

[Zoofemme]

Welcome to the forum phoebecat...as I'm sure you will soon find out, the folks here are great and you wont find a more caring supportive bunch anywhere else on the internet
As Nakamova has said, sideeffects for many of us are different and some of us can't take the meds that others can or don't respond to them. I can't even begin to imagine how it must be for yo since it your son is not able to articulate so much of what he experiences. I look forward to hearing more from you and you'll find most here willing to help as much as possible.

Take care,
Beth

 

[JRuner]

Welcome Phoebecat and thanks for being such a great mom! I am sorry That your son and you have to deal with Epilepsy and other challenges but I am so proud of you for be a such a great advocate and caretaker for him. We need more parents like you in this world as the parent to a 10 year old disabled daughter with Cerebral Palsy I know all the battles you go through to get your son proper care and respect. I hope that his doctors truly listen to you and work with you. I have worked with the mentally challenged and my wife is mildly mentally challenged it is so very important as you know to limit side effects as much as possible so that they can share hare how unique, beautiful and loving they are with the world. If you ever just need to talk please PM me.

Again welcome you Rock!

John Runer

 

[Cint]

Hi Phoebecat and welcome to our community,

You do have your hands full, but you sound like your doing a fine job! I'm sorry you've had such a long, tough road.
I've had epilepsy now for over 30 years have tried 10 different meds, had a left temporal lobectomy and now have the VNS, which helps control seizures but doesn't completely stop them. Your son's throat itching could be due to the VNS. Make sure you mention it to the dr.

 

[phoebecat]

Gee Whiz

okay - wow - so many responses - I have been talking to myself so long I am overwhelmed.

He got the VNS at the neuro suggestion in 2006. I trusted the neuro and he is a good person, but ... I now realize all available medications were not tried before the VNS. Oh, well - I do think the VNS tickles his throat. I have mentioned this to the neruo repeatedly. I am ignored. Got a new neuro for him - an epileptologist. He has only seen the epileptologist twice. We have a sleep study next week, because my son doesn't sleep well at night - he sleeps off and on all day - this may be behavior and it may be medical - nobody knows. He has been on Lunesta, Ambien, Restoril, Rozerem, Trazodone, Sonata off and on in the past five years. None of them make a whit of difference. in his sleeping at night.

He is on Inderal for ????? I just got him off Ativan a friendly psychiatrist prescribed for the provider. If I try to get him off the Inderal there is a provider discussion that it may help with behavior which I think is bull - I will continue to insist. Funny I am his POA, Guardian, Medical Agent and MOTHER and trying to get things addressed is like pulling teeth. Most providers of group homes for the adult handicapped prefer to drug the client to oblivion. Agents, parents are not really welcome because they interfere with the ages old practice of drugging instead of programming.

you know - I am embarrassed to continue. Unless you are a person of middle income, and I mean the real middle income, who has to rely on SSI /Medicaid for your adult handicapper who by virtue of those handicaps is not a tax payer or voter - this is a bore and maybe even scary. So I'm going to stop here.

I will try mightly to winnow out the bad drugs and continue to press the new epileptologist to do this - it may take a year - but I am closer than I was last year. I have already learned much from you all - that some of my son's mannerisms and behavior may be seizures breaking through that he isn't able to articulate (he talks but maybe on a 4 year old level) or doesn't recognize as seizures because he has been this way all his life, etc.

Because of you all and this forum I am closer (a Royal Bengal Tigeress roaring silently as she stalks the doctor/provider offices and guards her cub!!) What a maroon I am. Yeah, I want to bite or slash with a paw full of claws sometimes, but I behave myself for my son's sake. Ya know what I mean? )

chao baby

 

[Jan4you]

{{{ HUGS }}} So sorry for all you are going through.

My husband had E all his life..2 brain operations and ended up with VNS.
YESSS your throat tingles..vibrates and that would change my husband's voice when it happened and made him cough. It was a real bother but he was a trouper.

LAMICTAL also kept my husband up and he would not need sleep even though he was on other meds too.

Who the heck knows what is right ..this is an educated guessing game..but..trust your instincts and vent here all you want.

Warmly, Jan

 

[phoebecat]

BIngo

Yes his voice changes and he coughs and clears his throat. He complains of a sore throat all the time. But he also has an ulcer on his gum and Inderal side effects can cause that and a sore throat.

I will mention the Lamictal and sleeping and VNS and throat clearing/cough again (and again if I must) - Thank you thank you thank you -- wheeee - I have a new tool - best to you and your hubbie. It's a jungle sometimes.

did I say thank you???

 

[Birdbomb]

I'll just bet you didn't know VNS causes insomnia! When I had mine, in order for me to get to sleep I had to be drop dead tired. I still have residual problems that I attribute to the electrodes which could not be removed at the time of my ex-plant.

Another lovely present from VNS is it causes Obstructive Sleep Apnea, yes I have that too. It's good he will be having a sleep study and I will be very interested in his results. The more you describe his symptoms, the more they sound like adverse effects from the VNS. And just so you know, many units are placed into patients who are in the same or worse position as your son. (Apparently Medicare reimbursement is profitable to these doctors)This is where I get agitated. How can the doctors know if side effects are a source of trouble if the patient cannot communicate?

Having his doctor ignore your comments and complaints about VNS is all too common. That is a major complaint from members on my site. The doctor doesn't believe the VNS is a problem source even though NONE of the problems existed before the dang thing was implanted.

Ask his doctor if he has notified the FDA and Cyberonics of your reported side effect. Watch his face. Now tell him if he doesn't, you will.


FDA MAUDE REPORTS
http://www.fda.gov/MedicalDevices/Safety/ReportaProblem/default.htm

 

[phoebecat]

I KNEW it!! I didn't want to say the VNS was a billable procedure and grouse on the public forum about what I call Medicaid rip offs by doctors, but after the VNS was implanted and didn't help with the seizures I realized money was the object.

Thank you so very much for supporting what I knew instinctively. I imagine the electrodes get covered with scar tissue and are too close to the vocal cords to remove safely -

are you able to have MRIs??? I was thinking I would ask for an ex-plant but am worried that the electrodes will be left behind and if he were to get an MRI by accident they would be pulled and do damage to his vocal chords or something -

 

[phoebecat]

oh and I will ask the new neuro about the VNS and if adverse effects are reported for the handicapped people they implant in their practice.

ROAR!! (knashing of teeth, clacking of claws)

 

[phoebecat]

went out and registered on VNS Message Board - read some posts as a guest and found out the VNS is a true booger to get ex-planted - thanks doc, I trusted your recommendation! what the heck - my son is MR and not worth very much - what better population can one screw with and make a fat profit as well.

Roar. crap!!!!!!!!

 

[Jan4you]

{{{HUGS PHOEBECAT }}}

I like how you stand up and advocate for your son.

My poor hubby lost a LOT of weight as they kept "adjusting" the VNS. He was down to skin and bones. NO one attributed it to VNS except ME..and some ER doc.

AND his family and nurses in the hospital NEVER used the magnet. I had to tell them.. then show them how it helped. But who knows..

Maybe on the VNS site there are some successes.. or..they ARE successful so they no longer are on that site.

VNS might be a good thing for your son.. as its gives YOU some control over the seizure when YOU attach the magnet..right?

Think of that.. Please don't jump to conclusions about T19 etc as they have to make sure t19 gives approval and its like jumping hoops to get things approved..trust me. T19 ONLY pays pennies on the dollar so MOST docs dont like it for payment.

Just know that you can vent here anytime. We just care about YOU and YOUR son.

Jan

 

[phoebecat]

thanks for the info

I just get frustrated when the docs won't consider side effects or how a particular individual may respond to the newest miracle - there are no miracles for epileptics that I have ever heard of - it just is what it is - sigh

I get the feeling your hubbie is no longer with us - is this feeling incorrect? forgive me if it is -

 

[Birdbomb]

I KNEW it!! I didn't want to say the VNS was a billable procedure and grouse on the public forum about what I call Medicaid rip offs by doctors, but after the VNS was implanted and didn't help with the seizures I realized money was the object.

Thank you so very much for supporting what I knew instinctively. I imagine the electrodes get covered with scar tissue and are too close to the vocal cords to remove safely -

are you able to have MRIs??? I was thinking I would ask for an ex-plant but am worried that the electrodes will be left behind and if he were to get an MRI by accident they would be pulled and do damage to his vocal chords or something -

Scar tissue begins to form before the wound is closed, how much is formed and how quickly depends on your body. My VNS was removed almost 2 years ago, my neurosurgeon said there was just too much scar tissue. Now there are some lucky bastards who find surgeons that can remove them.

I was scheduled to have a MRI tomorrow. I had a seizure in February after being seizure free for 5 years. The imaging center was on the phone with me every day this week for one thing or another and today was about the electrodes. She called Cyberonic$ and when she found out the the electrodes or leads could generate heat, she called me right away and said no way. If they get heated it can cause nerve death, brain damage or death.

A few years ago the FDA issued a warning about MRI's that take the time and challenge of removing the coils but those are few.

 

[Jan4you]

Amazing Phoebecat..are you a bit psychic? Thats a good thing ya know.

Yes my husband passed quietly and quickly after laying down in bed. He was 52 and had 46 years of seizures..2 brain operations..VNS and many many meds.

He's at peace.. and I am relieved..thanks for noticing

Jan

 

[phoebecat]

A little hasty

Hello, all

Well, I flared up there about the docs and VNS and Medicaid rip offs and apologize for being a wild thing.

I know most are doing the best they can to help my son.

I will post about the sleep study. This is a first for my son. I will be with him. I surely hope they find some info.

He also has an ENT appt to determine whether the coughing, snorking, throat clearing, etc. is physical. I know docs seem to have to point in all directions before they look at the seizure meds and VNS as the cause of side effects. Difficult to watch my son suffer their possible blindness.

I need to make it clear that my son does not live at home. He lives in a group home in Winchester VA. I live in Baltimore MD and commute to his appts. I work full time because I am a regular joe and don't have the personal wealth not to work so he has been in group homes since he was 22 - an "adult". We buy lotto tickets once in a while - who knows, right? )

By the way, decent group home providers are scarce in MD and VA and I can tell you there isn't much in the way of regulation/standards or choices for the middle class, lower class and poor for their ADULT handicapped (or elderly or ill). Keeping him safe has had to be a major focus, unfortunately. However, after all these years he is finally with a provider that doesn't allow abuse and tries very hard not to neglect medical problems, but our society is a long way from intelligent funding of compassionate and appropriate programming and medical attention for the handicapped, elderly and other broken souls when there is no personal wealth. Hope this makes sense. I rant, perhaps. Tough.

Albert Schweitzer quote, as I remember it, "Consider occasionally the suffering of which you spare yourself the site." My son has taught me this and continues to do so.

I apologize for any hurt feelings this comments may foster.