New to this - and I mean completely new to this

[Jan4you]

My dear mother Phoebecat...why why are you apologizing?? At least not to me ok?

First of all, YES all your son complains of with his throat is REAL and probably most likely, that I'll be on this, its the VNS when it goes off. When it goes off as its computerized..every minute...5 mins..whatever time its set for.. will interrupt one's VOICE and comfort level. Docs may play this down. My husband I think had it set to go off every minute.. I think he got used to it..but then.. my husband NEVER complained. He'd do ANYthing to stop seizures. No one told him about his side effect..and it cannot change..unless disconnected from the computer in his chest.

I am a social worker.. can you tell? hehehe. AND always always advocated for the poor all the way to court systems. When I hear people, even me, complain.. I have to remember others have it much more worse. I have worked hospice in assisted living and nursing homes. Some good..some not. Even in a hospital.. you see patients get their food try for example and not be able to reach it.. or feed themselves..so staff comes in and says.. they are not eating. Some staff "get it"..but do not have the time to feed them. IN nursing homes..yes..they are fed but on THEIR schedule as ALWAYS there is not enough staff to go around.

So, I know what your fears and validate your concerns and experiences.

Now.. who takes care of YOU??? onder:

Luv Jan

 

[RobinN]

My daughter use to have a lot of throat clearing prior to her first seizure. I even took her to an ENT that looked down her nasal passage with a small fiber camera.

This irritant has been completely gone away for Rebecca, after eliminating dairy. Also helping her to maintain proper nutrition and taking out many sugars, helps the elimination process. Fungal / yeast overgrowth can cause some of these symptoms too. There are certain vitamins (such as Vit. B) and perhaps many medications that can cause an imbalance of fungal growth in the body. Regularly poo-pooed by doctors as not being relevant, I personally have experimented in my own body and can produce nasty side effects to an overgrowth of yeast/ fungus.

Something to consider.

 

[Jan4you]

Yes Robin that's right about how dairy can cause many problems and pheglm. I tell that to my son who has allergies.

But I do believe the throat itching/vibrating feelings are most likely due to the VNS doing off every few minutes. You can actually FEEL the vibration and it would make my husband's voice quiver..then end with coughing for a few seconds. It happened every time it went off..until he learned to wait and talk after it passed. What time is your son's VNS set to go off? How many mins apart does it go off?

So, you can time when you speak but the discomfort and coughing comes no matter what. My husband's VNS went off every minute!!

Jan

 

[RobinN]

That must be a very odd sensation.

 

[Jan4you]

YESSS its actually VIBRATING off and around the vocal chords from the wire around the vegus nerve.. too irritating for sure.

 

[Birdbomb]

That must be a very odd sensation.

It is, Robin, and when the throat decides to close up and choke you during stimulation, it's down right FRIGHTENING. You have to teach yourself not to panic or use the magnet to stop stimulation.

 

[phoebecat]

seems all for nought

hello, again

hope all of you are well.

my son, Kyle, had the sleep study and needed the mask but neuro did not mention at last appt maybe he hasn't gotten the report yet.

Kyle went to ENT for coughing, throat clearing, constant post nasal drip, etc. that report isn't available yet either

last neuro visit on 6/16 his Vimpat was increased to 200 bid because he had four seizures since the last visit.

Now my son has a painful rash on his neck and collarbone. This rash appeared about 1 week after the increase in Vimpat. I noted rash is a "serious" side effect and wonder what that means. How serious?

Is this Vimpat rash side effect common and will it pass? -

I am being viewed as over reacting mother by his providers/staff.

My son is unable to understand and says he wants the to "go to the doctor and have him check it" but his requests are basically ignored as a behavior problem.

His next appt with the neuro is 7/6 - can this rash wait until then?

Anyone who can help me figure out how to help him, please make suggestions.

Thanks much

ranran

 

[Nakamova]

A severe rash means seek immediate medical attention! It could be a sign of serious allergy to the med. Since it's difficult to gauge the severity of a rash, I would go ahead and seek treatment right away. Don't ever worry or knock yourself for feeling like you may be "overreacting" -- better to overreact than to underreact, right?

A milder rash is a sign that the med may be problematic. The slower the tapering-on process, the less likely it is for a rash to develop. But now that the rash has shown up, your son may need to be treated with antihistamines. The rash might or might not go away as he adjusts to the med (unfortunately tough to predict). Some folks end up going off a med if the rash persists.

 

[Endless]

Please take your son in to see a doctor right away. Don't wait until your july appointment.

How serious is a rash? It can range from VERY serious, to just annoying. A rash needs to be checked out ASAP to make sure it is not Stevens Johnson Syndrome.
http://www.stevensjohnsonsyndrome.org/?gclid=CNDLmO6xxaICFSCjiQodjCa-7w

You mentioned drippy nose, etc. It's probably just allergies, but it can also be an early sign of SJ Syndrome. So this can't wait until his appointment on 7/6. Like I said, it is most likely nothing - just an allergy or a cold. I really don't want to scare you, because the odds are very remote that it's SJ. But if it is SJ Syndrome it could cost him his life. Please go now to get it checked out.

I have a rash from Trileptal, and a dermatologist checked it out and said it wasn't SJ Syndrome, so we are treating it with antihistamines to keep the rash at bay. The docs are keeping an eye on it, and I have instructions that if it gets worse AT ALL to go in right away. The hope is that someday my body will get used to the triletpal and then the rash will be gone, too.

 

[KARDSHARQUE]

Welcome aboard phoebecat. You'll find that a lot of your questions are answered here from a great group of people. Some of the stories you read you will find very interesting. Good luck.

 

[phoebecat]

Newest angst

He had to go to the ER today because he could not get up and couldn't walk. Virginia requires a trip to the ER to cover their liability.

(This is not the first time he has been so drunk/high seeming he couldn't walk and had to be supported almost completely even before the Vimpat but more now on the Vimpat.) That and the rash and new sudden hair trigger outbursts of aggression and I insisted he go to the neuro today. Boy does everybody hate me! Tough.

At the ER said he had low blood sugar and nothing else and that was the cause of the inability to stand/walk.He has never had low blood sugar before. No diabetics in family either side. And he had had a good breakfast staff told me. So he is going to the GP to check this out.

Neuro said the rash was not Vimpat related because it is fading, ataxia is not related and aggression is not related to Vimpat or any other medication he takes (Inderal, Lamictal, Depakote and Vimpat). Titrating depakote and that will take until Sept 2010. Up to 400 mg day Vimpat on 6/17. 350 mg until 6/17. Inderal 40mg in a.m. (WHY?????? it makes him groggy!! but oh no it doesn't!) Lamictal I am not sure anymore how much.

Of course, neuro agrees the inability to walk is low blood sugar which is crazy because two of the other recent times he was drunk and couldn't walk he had just eaten. Anyway neuro wants to put him on Clonidine on 7/6 and as he is already on Inderal I faxed instructions (as his Mom, POA, Durable Medical Agent and Guardian) "no way - just one, please choose". I personally don't like the Inderal as I think it causes the lesion on his gum and maybe other stuff. Clonidine would be better but we can only titrate one med at a time - so as far as I am concerned if he takes Inderal he will not take Clonidine unless I hear different from someone else.

Anyone know if neuro can titrate Inderal and start Clonidine? Anyone take Clonidine? and if so for what? Inderal is supposedly for tremors but he takes it for behavior (????)

By the way, when Kyle says his body hurts, or his head hurts or ANY physical complaint it is considered attention getting behavior. All is "BEHAVIOR" - he is a container that you can put any amount of any medication into and he will have absolutely no adverse reaction to those meds - it is alllllll behavior that should be medicated with psychotropics like Ativan, Risperdal or something else. I have mostly blocked the attempts to add these to his drugs. Funny, he goes to a pyschiatrist every three months who has no permission to prescribe - for a 15 min appt and the guy asks him how he is doing, etc. Being handicapped Kyle says "fine" and "hi" or maybe "I like my new body wash." What a waste of time and money, yeah? I guess he psych needs the dough. I digress into the surreal. - sorry

I am reduced to being a b---h. Can't walk is behavior? Acts drunk or high is a behavior? Legs hurt is behavior? Don't listen when he TELLS you he hurts is a behavior? I gently point out to them that if you ignore my telling you I hurt or don't feel well repeatedly I can guarantee you will get a "behavior" from me.

okay I rant -- sorry - so very frustrating -

I have annoyed everyone in his provider world with my refusal to give up which is what is hoped for. Hey I am his POA, his LEGAL AGENT not to mention his mom - it is my duty (and desire) - what planet are they on?

If anyone can pick out the questions in this mess and give me a clue so I can be better prepared for the 7/6 neuro appt that would be great - this neuro Dr. Paul Lyons in Winchester is supposedly really good, but Kyle started seeing him in early May and Lyons seems hell bent on pushing all concerns about side effects or how Kyle might not be suited for Vimpat aside with a vengence. I am at a loss as to how to get Lyons to see it from Kyle's point of view. Yes, Kyle is mentally handicapped but he is verbal and able to say what hurts and is not so retarded mentally that he doesn't know when he opinions are dismissed. What a pickle.

aaaaaaaaaaaaarrrrrrrrrrrrrrrrrggggggggggggggggghhhhhhhhhhhhhhh!

later...

 

[phoebecat]

Glad your daughter was able to relieve that.

My son has an an intrinisc calcium deficiency- was put in an NIH study by his neuro Mary Coleman, Washington DC when he was 6 - found his ingested calcium not getting into bloodstream - 2400 iu of vitamin d supplemented and the blood calcium went up but NIH could not tell if that calcium was getting through the brain barrier. It was 1973-74. Brain starved of calcium can cause seizures.

Have you investigated the Johns Hopkins Ketogenic Diet for your little one? Been around since 1923 and helped many children with seizures become siezure free. There is a movie you might enjoy called "First do no Harm" starring Meryl Streep that really has great info. It is about a real mom and what she went through to help her son become seizure free - with the diet. It is a tool all should consider. Check it out if you want. No neuro, no one ever mentioned this diet or its 50 year success for many to me. I would have tried it Kyle on it.

I wish you and yours the best -

 

[Endless]

Phoebecat,

What a mess. Both the situation and how the doctors are handling it.

Why did they think it was low blood sugar? Did they test his blood sugar and it was low? If it was low and he had just eaten, it points to other possible health issues.

Once again, these doctors are driving me nuts. Vimpat is a relatively new drug, and not many doctors know much about it. Had the ER doc bothered to read the package insert for vimpat, she or he would have seen that aggression is a side effect of Vimpat. http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=11432#nlm34084-4

So is a rash. And just because it is getting better doesn't mean the vimpat didn't cause it. It just means he's getting over it, which is good.

And so is "gait disturbance" which means inability to walk.

He's also on quite the cocktail: Inderal, Lamictal, Depakote and Vimpat. Any one of them could be causing problems, or it could be the mix together.

Having your new doc review all his meds, and his symptoms and side effects, would be a good way to spend your appointment time, in my opinion. Go with a list of side effects, when and how often, how severe. When they got better or worse and if they correlated with ramping up or down on any given med.

Do you keep a seizure diary, with seizures, side effects, medication, what he eats, possible triggers, etc? I know that is hard when he lives in a separate place. But if there is any way you can think to do it, it would help.

Please hang in there. And keep annoying those doctors until you get answers.

 

[RobinN]

Hi phoebecat, I am not sure who the above post was directed to.

You prior post was interesting, because my daughter has had low blood sugar. In fact was diagnosed with hypoglycemia, when her 3 hr glucose test went down to 55. She is not diabetic, nor is there anyone in our family that is. I have just been using diet to make nutritional changes which seems to be regulating her blood sugar.

I also us nutritional supplements. You mention calcium deficiency. Wouldn't that also mean magnesium deficiency? They need each other to be absorbed properly. Magnesium is viewed as an anti-convulsant. It was prescribed for Rebecca as an anti-seizure therapy. Rebecca is also low in Vit D, so we supplement to the amount of 5000 IU daily. She still remains on the low end of the range.

When Rebecca was 14 I read about the Keto Diet, from reading online. No med practitioner ever suggested it to us either. I instead decided to put effort in the information that www.dogtorj.com has on his site. I believe his info, the specific carb diet info, the low glycemic index info, and the Modified Atkins Diet info, all have the direction that instinctively makes since to me. Reducing refined carbs, no additives, increasing vegetables, and balancing throughout the day the proteins.

This for us has helped with the blood sugar swings that she seems to have had. It also seems to help with the imbalance of her hormones at certain times of the month. All very interesting, and far easier to manage than the rollercoaster ride she had when on meds.

 

[phoebecat]

Thanks Endless

My son lives in a group home.in Winchester VA He is 42. He no longer lives at home. I do all my advocating half blind because I work full time and live outside Baltimore MD. I attend almost all doctors appts - will not be able to go to 7/2 general doctor but I fax and use phone and email a lot to fill in the gaps in treatment appts -

This neuro is a new - and highly recommended - I am at a loss as to why he is being such a bull - my son's former neuro is in the same practice - Winchester Neurological and was a great guy but had not updated Kyle's meds in 15 years so he suggested Dr. Lyons as a step to take and Kyle can always come back to him after Dr. Lyons does his magic. So. that's where it is.

His provider writes a seizure form for each seizure and they are pretty good forms. They fill out a behavior form when he acts up and write a log of stuff they notice. Most of it is pretty good. The problem is getting it to the neuro regularly and getting him to read it.

When I mentioned the side effects I thought my son might be experiencing the assistant doctor told me those stats were not reliable as maybe only one person had that reaction. I said what if Kyle is like that one person- shouldn't we consider it? Didn't go over well. I have faxed these questions also and really annoyed the neuro. Maybe he thinks stopping the seizures is far more important than any side effect. This is probably true for some non mentally retarded epileptics who are trying to have normal lives. My son will never have those things and in return I think the quality of his meager life is more important. does that make sense?

Over the years I have wondered sometimes if blocking the pent up electricity/energy that causes a seizure forces it to discharge in another form. It is a short circuit in the brain - electric - like lightning - does it need to discharge somewhere - can you plug it up - for Kyle this is an important consideration. If the drugs take him down so that he can't even walk wouldn't it be better to let him "discharge" with a seizure so he can at least go outside and have a little fun? he will never drive or marry or have a job or pay taxes so his small life is all he has and the drugs are taking that away and leaving him nothing. I love him so very much.

I hope you don't take this view the wrong way.

 

[Endless]

Pheobecat,

I really do understand your viewpoint. Sometimes I wonder if the meds are worth it, too. I hate the side effects, and wonder how long I can take it or if it'll ever get any better. On the other side of it, I worry about what would happen if my seizures are untreated. They may progress into TC's. And untreated now I'd never be able to work, drive, etc. I know that last part isn't a consideration for your son. But progression of seizures in intensity or frequency may be.

Talk with your doc about withdrawing him off his meds if you think the meds are causing all these problems and that's what you want to do. You can always try it and see what happens. If it turns out it didn't help you can always put him back on.

As for "plugging up" energy.. different seizure meds work different ways. Some slow down the brain waves so seizures never happen. Some block receptors in the brain. Maybe someone in here who is more knowledgable than me can explain how each of your son's meds work.

A question - what are you doing for YOU right now, to help you deal with all this stress? Caring for a loved one with seizures can be really stressful, even long distance. Please remember to take care of yourself. Sort of like how you have to put on your own oxygen mask first in the plan, before you put on your child's. If you burn out, you won't be able to help him let alone yourself.

Take care.

 

[RobinN]

For us the quality of life was / is a priority. Perhaps it is unusual, but for Rebecca her progression of seizures were greater while ON meds. She is seeing far fewer seizures OFF meds. In fact, it is far easier to figure out how to improve her health while she is not taking any medication. She has suffered a few seizures, but it continues to improve over time. I always say it isn't a quick fix but for us, it is the right route to take.

 

[phoebecat]

thanks folks

I don't want to take him off all his meds, just the Inderal and IF vimpat is not for him others such as Keppra should be considered. I think side effects are important and should be weighed carefully with respect to quality of life. That is the reason for the new magic neuro visits. Some people have intractable seizures and that is just how they are made and drugging them to the point of unconsciousness is not living. I will pursue the neuro to consider this. I can tell he is very focused on eliminating the seizures and that is great, but he must think of who his patient is. As far as tonic clonic siezures, Kyle has them once in a while - they come with the partial complex package.

I take very good care of myself and well, do enjoy advocating for my son and his compatriots. When not doing that my husband and I enjoy organic gardening, reading ( right now I'm reading The Big Short by Michael Lewis and it is a really funny book about how Wall Street via CDOs and credit default swaps took the world economy to its knees - yes funny the real people in it are so very strange- some amoral some not allllll greedy!!!), sewing, qi chong, lots of stuff. My son was born to me for a reason: because I can do this for him and not break. I am frustrated that this neuro won't listen, but he will.

Thanks for your help - all.

 

[phoebecat]

Okay I am really confused

Vimpat began 5/12 at 50 mg bid. I don't have the titration schedule so don't know rate of increase for sure. Do know increased Vimpat to 200 mg bid on 6/17.

Depakote reduction
Lamictal 350 mg.
Inderal 60 mg in a.m.


Broke out in rash on neck and collarbone on 6/26.
taken to ER 6/29 because could not stand up - ataxic and dizzy. ER found low blood sugar. Rash still present - but ER no mention in release papers. To neuro in the afternoon of 6/29 and he said rash not related to meds.

To regular GP on 7/2 at 11/30 a.m. re: low blood sugar and rash. Liver function really good. No mention of rash. GP thinks Ataxia/dizziness related to seizures and will call neuro.

7/2 at 7:15 p.m. - really bad rash on collarbone and some on his back. Went to ER and with all info (and his neuro happened to be on call for ER) said it was some kind of abrasion and not a rash. Said it looked like a backpack rubbed it or "something" - Kyle doesn't have a backpack and did not fall so this is a mystery - topical antibacterial prescribed.

He will see neuro on 7/6. I want to get the neuros PLAN for treatment. The neuro moves quickly and doesn't answer questions well - when I ask questions because I am Kyle's mom and agent neuro seems he doesn't like to be questioned. (as I am stressed and want for information and explanations - I am the skeptical/show me type)

I am getting confused and kinda worried. Rash discounted after all I have read about Vimpat. ) He has never had a rash before in his life.

As a matter of fact ALL possible side effects are never discussed as tho Kyle is a person who can take any medication in any amount and his metabolism is so perfect there are never side effects. How can one take these powerful CNS drugs and feel nothing inside? As Kyle is MR and doesn't understand how to specifically articulate how he feels I try to do that for him. If he says "I don't feel well!" I believe him. At 6/17 visit neuro said Kyle's agitated voicing that he did not feel well was a symptom of his CNS deterioration. I was sorta taken aback and will have to pursue the neuro's thread at 7/6.

over the years neuro sometimes says he has Lennox Gastaut and his meds are for that and have been for years. but he has normal EEGs. Now he is titrating Depakote and acting irritable or very happy laughing - ataxia is very bad in spurts - could these be partial complex manifestations?

I am afraid for him. I don't understand what is going on. He is forty-two and Mentally Retarded. Until May of this year when I joined this forum for him there was no one to bounce thoughts off of. If his EEGs are normal can he have Lennox Gastaut?

This is Kyle's last chance at appropriate treatment. If I can't get a handle on what he needs as he ages I fear he will be institutionalized because he takes too much time and effort (three years ago the neuro told me "...many (sic) think these people are not worth it...he will never pay taxes..." I don't know if neuro was speaking of society in general or the state of VA which ranks 47th in programs/funding for disabled adult citizens. I am not rich enough to not depend on the system to help him. He would have not health care and I would not be able to work and would not be able to support myself or him. I am 64 and if I outlive him he would be jerked into a custodial/institution setting in a heartbeat. I have seen this many times when elderly parents pass and the handicapped/MR offspring is left standing alone. I must make this work for him.

Whatever...

 

[nana1]

I have had seizures all my life. I was getting to a point were i was having too many side effects. I talked to my neuro, and we decided i was going to slowly start getting off each med, to see how things worked. I am know only on Keppra, Zonegran, Lamictal for my seizures, only because i tested which drug was giving me which side effect, and which drug seem to help. I am still not under control with my seizures. I did just go for 6 months with out a seizures ( yeah yeah for me).

I am not able to have brain surgery. My neuro and I talked about a VNS, but when i heard and looked up the side effects i told him no way. I said i have no warning when a seizure is coming on so it would be no good for me.

I have seen over 10 neuros so far. This one sits and listens to me, he will answer my questions when i ask. We will discuss side effects on drugs he would want me to try, but he knows i have the last say so in that ( i can go home and not take that one). He will tell me what the results of test are when i ask him. It is best to find doctor who listen and talks to you and your son, and spend TIME with you.