Switching Meds

[ccnm4]

Hey my son Nicky is 13. fine for almost 1 /2 years on max clobazam only, high dose of 35 mg nightly. But then "boom" tolerance developed and now seizuring every few days, complex partials. So the doctors, want me to put him on Lamotrigine for 2 months along with this heavy dose of clobazam, then slowly wean off clobazam. Is this usual? They say they want to be sure in case he develops the rash, to not take him off the clobazam right away. As they will then have to take him off Lamictal (lamotrigine) right away. I'm new to this switching meds things. Is this what happens? I hate the idea of 2 full heavy drugs in my 13 year old. He seems so fine except for the seizures,not sick and the idea of these pills making him sick or the dreaded rash is making me sick. He crys in his sleep, "i'm not a sick boy mom; please stop" It breaks my heart.

 

[epileric]

Welcome

Everybody reacts differently to meds. It is not uncommon though for someone to suddenly change how their body handles any anti-epileptic drug.

Some people even develop side-effects after being on a drug for years with no problems.

Personally I think it's great that the doctors are watching for side-effects & making sure your son doesn't have adverse reactions.

Also I gave you your own thread so that everyone can welcome you to the site.

 

[Nakamova]

Hi ccnm4, welcome to CWE!

Lamictal has a lot of pluses. It's generally well-tolerated, doesn't tend to affect mood, and has fewer cognitive side effects than many of the AEDs. But it's very important to taper onto it as slowly as possible to minimize the risk of an allergic reaction. I know the pace can seem frustrating, but low and slow is the way to go (and the SJS rash is rare, less than 0.8 percent of kids develop it). I transitioned onto Lamictal from another med over the course of about 2 1/2 months, going up by 12mg increments (I had to razor my pills in half). During the transition time I didn't feel drugged up. In fact, for the first month or so, Lamictal made me feel "perky". I remained rash-free, and I have been seizure-free for almost 3 years.

There were/are side effects, and I can't guarantee that you son won't have any, since everyone reacts differently to the meds. Lamictal isn't for everyone, but my experience on it has been basically positive.

Do you know what the target dosage level they have in mind for your son? Ask his doctors if they think he can keep it on the low end of the dosing range. There is no specific required dosage -- with Lamictal, whatever works, works, and the suggested range varies anywhere from 100mg/day on up.

I hope your son transitions smoothly. Let us know how it goes, and feel free to check back in here with any comments or concerns.

Best,
Nakamova

 

[KimberlyD]

I know when I was in my teens my doctor changed my meds a lot and most of the time had me on two different meds. They told my mom that due to all the changes teens go through (weight, height, moods etc.) that it is hard to know the right dose to give them and even the right dose today might not be the right dose a week from now. It is hard for parents, I couldn't imagine going through that with a child. As I hit my 20's the doctor took me off the depakote and I have been on tegretol (carbitrol) alone ever since. Good luck with your son

 

[ccnm4]

thank you

I feel so alone with this. Thank you to all that answer. We don't know anyone else with epilepsy and it is very scary. I love my son so much and it is so hard to give him the medication knowing possible side effects. His dose will be eventually, 2 months down the road, 100 at night and 100 in morning. I would be fine with that but he will still be on the very high dose of clobazam until he is on full lamotrigine and then we wean him off of the clobazam. It will take either 7 months, or 14 months if we want to move slower so that he has no withdrawal. I am scared about the double medicines in his system and the side effects of lamotrigine compared to the side effects of clobazam which are mild but the clobazam withdrawal, which can be terrible. My son is very big, 6 feet tall and 145 solid muscle at 13. He seems so fine, except for his complex partial seizures; one or two every five days. He is the strongest, bravest person I know. My husband does not want to put him on the lamotrigine because of the black box warning but I don't want him to ever seizure again. So many tough decisions. We have to weigh our fears of seizures with the fear of the medicine.

 

[Colts mom]

Wow, I get reared up in here. My son will be 12 in July, we've been through so much and with absolutely no support for years. I have only recently found this group, I am happy for you to have all the support here with all that you are going through. My son and I have always been very close and I am the only solid that he has ever had. I have been learning as much as I can about his meds, because I have recently had to place him in a program to help get his behaviors and education under control. The hardest decision I've ever faced. I have watched my son deminish from being active and strong to a shell of him. He is on depakote, lamictal, and keppra. He has also developed hypothyroidism, which I've read could be a result of the medication. My son weighs 73 lbs, he has tremors and his speach is so labored. I've spent countless hours researching and wondering if everything is going to straighten out. His seizures are both tonic clinic and abscence. The tonic clinic seem to be under control, but not the abscence. To see him this way hurts, but at 9 I was at work and he rode his bike to school (he'd been seizure free for 3 years prior) he didn't wear his helmet and had a seizure. He crashed his bicycle and sustained a prety good head injury. This lead into a long period of several seizures causing head neck & back injuries. So I understand not wanting to let them seize! Hmmm got quite into my story there. I just wanted to say that I think it's great that you are taking proactive steps in finding information that you can't find anywhere else. Epilepsy isn't just an occasional seizure, it's unbelievably indepth. I've been reading here today and I am so impressed with the group.. Good luck to you, hang in there!

 

[Colts mom]

Oops, sorry (auto correct) I typed "I got set up in here" not reared.. Sorry about that.

 

[ccnm4]

changing

already I see a change in Nicky. He had to sleep for 3 hours this afternoon. His stomach is so sore and he seems kind of keyed up. I don't know, I will monitor it. He is really worried so alot of this stuff could be from anxiety too. He himself keeps saying is this a rash Mom? Two months of this (if we're lucky and it works without too much side effects) and then hopefully slow wean from clobazam and no more or only slight side effects. Looking forward to a year from now when this is all done. I have faith in God but sometimes its hard to just not be angry when my poor baby is going through all this crap not to mention the seizures! I know how you feel Colt's Mom, I would give anything for it to be me but I don't know if I'd be as strong as him. They are so brave; I know a hero and it is my son. Far more than any movie star or sports star.

 

[Nakamova]

and he seems kind of keyed up.

That might be from the Lamictal, though it's also probably too soon to know for sure. Lamictal made me "keyed up" too but just for the first month or so.

 

[Day]

Hi ccnm,

Right around puberty, everything started going haywire for me. I'd always had seizures, but they increased significantly sometime around 9-12 yrs. old. It wasn't a 1-time fix, either. I needed constant blood levels, and my meds had to be continuously increased, by just the slightest bit. It sounds like this may be your sons' case. At 15, I was taking 3 meds, so he should be ok on 2. This continued until I was into my early 20's.

I haven't taken either of the pres. you mentioned, but that is the normal course of action, for doctors to wean someone onto 2 drugs and then get them off onto one.

Anxiety is a side effect of most medicines, so don't worry too much. I found it helped a lot just to write everything down in a book that only I looked at, and wrote it a little nicer in a booklet for the neurologist. (What a seizure feels like: beforehand and after, side effects: even if you don't know if it's from the meds or not, even what the anxiety feels like: and how, when, why it presents itself).

 

[tase37]

Hope your child will feel better soon and I hope the seizures will come under control better!