Son just started Lamictal on the 11/21/10 and....

[seanr53]

G'day all,

My 15 month old son Luke, has been diagnosed with Epilepsy, back in August, after experiencing frequent atonic seizures.

Prior to the 21st, his medication consisted of Clobazim, Topamax, and Frisim, with limited success in controlling the seizures. We started the Lamictal on a very low dose 2.5 mg per day as per our Paed. neurologist instructions.

Early Thursday morning, Luke awoke with a fever. We took him to our GP, who subscribed antibiotics for a suspected throat infection. Then Saturday he broke out with a rash over his body. We took him to local emargency dept. as recommended by our paed neurologist, but they had no idea about Lamictal, and suspected it to be a viral infection. They said there is no way of knowing for sure whether the Lamictal is the cause.

We have decided to cease us of Lamictal - Do you think we have done the right thing?

[epileric]

I hope you tapered off slowly & didn't stop suddenly. You can trigger very bad seizures by suddenly stopping (something I learnt the hard way).

Personally I don't think it right to take your child off of any anti-epileptic drug without letting the neurologist know what your doing first so that s/he can monitor the situation should they feel it is the right thing to do.

[seanr53]

Epileric,

Thanks for the advice. But Lukes has just started weening onto Lamictal, at a very low dosage, a tiny fraction of the final level prescibed.

We will notify our Paed. neurologist of what has happened, and what we have decided.

Regards,

Rap53

[Endless]

Please consider taking your son to a dermatologist who can evaluate your son's rash properly, ASAP. At least see your neurologist. Steven's Johnson syndrome is a possible reaction to Lamictal and is extremely serious. The odds that it is SJS are very small, but if it is SJS, just stopping the drug isn't enough. He would need treatment FAST.

Your son's rash is most likely the fever or virus, or a reaction to the antibiotic. But because he's on lamictal it's good to be sure.

Did you ask the Emergency Room doctors or your GP specifically about Steven's Johnson syndrome? Flu-like symptoms, fever, and rash can be symptoms.

Don't get scared by these links. The odds definitely are against him having SJS. But it never hurts to be educated on a given topic. Re: the photos. In it's early stages it doesn't look like blisters. Couldn't find a pic of the early rash.

http://en.wikipedia.org/wiki/Stevens...hnson_syndrome

http://www.mayoclinic.com/health/ste...ndrome/DS00940

http://www.sjsupport.org/

http://www.sjsupport.org/photo1.shtml

Please let us know how he is doing, and what the doctors say.

[seanr53]

Good news, Luke is feeling much better. His fever has subsided, and it looks like the rash is disappearing. Luke has been off the Lamictal for 48 hours. We will follow this up with our Neurologist today to see where we go to from here.

Thanks Endless, the information you provided was of great help. I did not ask the paedeatrician at our local hospital (Wollongong) about Steven's Johnson Syndrome (I will remember that in the future), but asked her to speak to the resident neurologist at Sydney Childrens Hospital - the neurologist made the same recommendation you did - request the dermatology dept. to review. Unfortunately, being a smaller, regional hospital, Wollongong Hospital doesn't have such a department!

I was sent home, and advised to come back if it gets worse. Not really happy about this - it could have been serious. Lesson learned - I need to be aware of all the risks, as your average GPs and paedeatricians are not likely to have experienced the risks associated with these treatments. I will ask my neurologist to give me all the details about the risks. Simply telling me to visit the hospital if he gets a rash is only helpful if the doctors at the hospital understand what the risks of a rash are with this medicine.

[Endless]

I'm so glad to hear that Luke is better.

It defnitely sounds like it could have been the Lamictal. It doesn't mean he's out of the woods, though. Keep an eye out for leisons in his mouth, etc. He's too small to tell you if he has flu-like symptoms, but that can be an indicator of SJS.

So how are YOU doing? You've been in an incredibly stressful situation with your son. Are you doing things to take care of yourself? How are you feeling?

P.S. Your son is so cute!

[seanr53]

Lukes, fever is long gone, and the rash is clearing up, but we have noticed he is sleeping for very long periods since coming off the lamictal, seems to have little energy and is easily worn out.

He seizures have also increased a little bit, but the severity of the seizures has noticably increased since we dropped the Lamictal. I guess it was to be expected given that he was weened off the Frism prior to starting lamictal, and is now only on the two EADs.

Do you think the tiredness and the increase in seizures are related?

I'll be talking to the neurologist team about it first thing in the morning.

Endless, the past few months have been pretty stressful and upsetting, particularly for DW. Hope to take her away for a break soon - she deserves it. Thanks for your concern.

Regards,

Sean

[Nakamova]

The body tends to need a lot of sleep as it recovers after a seizure. If the seizures are getting more frequent and more intense, then it's likely that Luke's fatigue is related to that. You should check in with his doc to be on the safe side.

[Endless]

Hi, Sean.

I agree with Nakamova. And, it could also be caused by going off the Lamictal. Lamictal makes some people feel really speedy. The first time I took Lamictal I was taken off of it due to a rash. I was exhausted for a week or so. I blamed it on the new drug I started, but looking back it could have been withdrawl from Lamictal.

[seanr53]

Just thought I would let you know how things have transpired.

We restarted the Lamictal on the initial low dosage, a week ago, and there have been no apparant side affects to date. Looks like luke was unlucky enough to contract a viral rash at the same time he started the treatment!

Luke's condition has improved over the past week, with the number of atonic seizures falling from about 50 per day a few weeks ago, to about 10 per day (we recorded 7 seizures today-using seizure tracker on the smart phone - anotehr great tip I picked up on the forum! My Paed neurologist will be impressed!). It is a bit of a mystery to us why the seizures have decreased - the Lamictal dose (2.5 mg per day) would surely be too low to make any difference. Perhaps there is a significant lag in the impact of the Keppra and topamax?????

Then again it could be diet.......He has not been eating well, and there were a few days there where he ate very little. So many questions spinning round in our head.

I guess we only 4-5 months into what may be a life long journey..........

[Endless]

What great news that your son is over his virus and the rash, and it wasn't the Lamictal!

Also great news his seizures have decreased. Sometimes when there isn't enough of the meds in a person's system and seizures decrease anyway, it can be due to lifestyle/diet changes, or it can be random variation. There have been times when I thought my seizures were better but it was just my body pausing for a bit, and times when I thought my seizures were much worse, but it was just the luck of the draw.

[dragonlady1978]

I am so glad to read that your son is doing better after such a scare, and that the rash was not due to the lamictal.

Lamictal wasn't for my son, and it has been quite some time so I do not remember the dosage he was on when we tried it....but I do know that when we started the Keppra he is on now the result was drastic and immediate reduction in seizures after only the first day. I can only assume that when you find what will work that it is entirely possible to notice a significant difference even on low doses.

I do remember that he had a very decreased appetite on Lamictal, whether that is a common side effect I'm not sure. My son had severe hand tremors and problems with coordination so he didn't stay on it for more than about a month. I also agree with the other posters that increased seizure activity makes a person very tired. There have been times where Hunter would sleep most of the day because he was having so many complex partials, he almost always falls asleep immediately afterward. Seems to take alot out of him.

I know it must seem to good to be true when your child is having so many seizures and they suddenly stop-atleast that is how we felt. I sincerely hope that y'all have found what will work for him and you get continued success

[ajax]

It may seem like an ultra low dose, but that Lamictal is powerful stuff.

[seanr53]

Luke has been on Lamictal for two weeks now, albeit at 2.5 mg per day (he is only 20 lbs mind you). Over the past few days his health has deteriorated. He is suffering from:

1) Difficulty breathing - breathing heavily at 55 breaths per minute.
2) Difficulty swallowing - solid and liquids.
3) Severe constipation and abdominal pains.

We are pretty sure these symptoms can only be explained by the lamictal, as he has never experienced these symptoms before. Today hehas been in a great deal of abdominal pain.

We wnet to our local hospital - they were of little use. I'll be calling Sydney Childrens Hospital, but would appreciate some of your thoughts.

Regards,

Sean

[Nakamova]

I'm sorry Sean, I hope you get to see the docs soon. In kids a common side effect of Lamictal can be sore throat or upper respiratory infection, so that's what may be happening with Luke. And if he isn't able to eat easily that could be causing the G.I. symptoms too. Keep us posted on your little guy, I really hope this is unrelated to the Lamictal.

[Endless]

Sean,

I'm so sorry your little guy is feeling awful. Lamictal can really turn a person's body inside out. It's good you have an appointment with the doctor. A decision needs to be made whether to take him off the medication, reduce the dosage, or just try to manage the symptoms.

I'm an adult on lamictal, and sometimes it feels like my throat is swelling shut and I can't swallow. Also, it is very difficult to cough. My throat isn't really swelling, so I chalk it up to the lamictal.

I've also had 3 sinus/chest infections in the last 2 months. It didn't even occur to me it might be the lamictal.

I'm also sick to my stomach. I feel like if I eat I'd feel better, but when I do it makes things worse. Being dizzy doesn't help, either. I know this is all the lamictal because it gets worse again every time I increase the dosage.

My doctors are trying to control the symptoms. I'm not willing to go off the Lamictal at this point. But the time may come when they need to switch me.

Will you let us know what the doctor says?

[seanr53]

Took Luke into Hospital last night. He has pneumonia - poor little fella.

Everything should be OK - he is in good hands.

I'll keep you all posted.

Regards,

Sean

[Endless]

How is Luke doing?

[seanr53]

Looks like Luke will be OK.

Luke has been on antibiotics in the hospital since early Sunday, and his condition is improving rapidly. His paedeatrician is hoping he can come home on Tusday.

So we are very glad to have him back so close to Christmas. We really don't want anything else to go wrong over the next few weeks, while so many of the best help we be away.

Fingers crossed there will be no more dramas for a while.

I am not sure whether there is a link between a susceptibility to chest infections and epliepsy. We may learn more when we get luke's genetics tests back next week.............

Regards,

Sean

[Endless]

Sean,

There might be a relationship between his Lamictal and repiratory infections. Here's a link to the package insert for Lamictal. Rhinitis is listed as a side effect for 7% of the people, infection in 5%. It may be worth bringing up to his doctor.

http://dailymed.nlm.nih.gov/dailymed...038#nlm34084-4

Since I started Lamictal a couple of months ago I've had 3 sinus infections and bronchitis. I'm blaming it on the lamcital but who knows?