Mouth sores and high fever with Ethosuximide

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Lovehope

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Hello everybody, my daughter is 7 and she started taking Ethoduximide 3 months ago for her absence seizures.
When she hit the 3ml twice a day she developed mouth sores, a sore throat, and high fever. Her blood work was good, so the neuro had us continue. She had the same thing happening soon after I increased the dose to 5 ml and now at 6 ml twice a day. I am very worried, because of the serious side effects of blood dyscrasya and drug induce lupus, but her blood work again was ok, and the neuro want us to continue. She also says that it's not the medicine making her sick, which to us is actually so obvious because it happened each time right after the dose increase. She got sick 3 times in 1 month and a half. She is usually an healthy kid.
I kept taking her to the pediatric clinic and the drs were siding with the neuro, until finally, this last time, one admitted that there is a connection with Ethosuximide. But she also said that she understand why the neuro want us to stick to it, the drug seems to work and it's the best for her type. Valproic acid and Lamotrigine have more side effects.
Did anyone have the same side effects? I can't find anything like this anywhere.

How often do you of blood work?

Thank you for reading.
 
Lovehope

I am no doctor but even I can see there is a connection, I would be taking her of it. I just looked up the side effects and this is what I found

nausea or vomiting

sores, ulcers, or white spots on the lips or in the mouth

have a talk with the neurologist or doctor again.
 
Hi Lovehope, welcome to CWE :)

There would seem to be a very obvious link between the meds and those side effects. As Fedup pointed out- those symptoms are all listed. They're classed as 'tell your doctor right away' ones as well.

If the neurologist doesn't want to entertain the possibility it's the meds that are causing it, I'd seek a second opinion ASAP.
 
You say they happened when you upped the dose to 3 ml. then again when you upped the dose to 5ml. so I'm going to assume that they went away after a certain amount of time before happening again when upping the dose.

From what you described it sounds like it's just a temporary side-effect until your daughter gets used to the new dosage. I know I often get side-effects when trying new meds or upping dosages that eventually subside.
 
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That is really awful but I have noticed that some neurologists just refuse to admit that it is anti-seizure medication causing the side effects. I'd agree getting a second opinion would be good, even if it is from your GP.

It certainly was nowhere near as extreme but I developed a tolerance to Tegretol and when my neuro upped the dose I started bruising way too easily, got covered in rashes, had vision problems, vertigo and it rendered my anti-anxiety completely useless. Aside from the anti-anxiety med situation the others are well documented side effects of Tegretol and it took much nagging and a comprehensive blood panel to show that I was over the theraputic range and was anemic, then he had no choice but to confirm it was the Tegretol causing it, especially when everything went away after coming off it.

I would keep pushing and pushing until someone pays attention and looks in to it.

As for blood tests I usually have medication levels taken every 3 months and a complete work up once a year.
 
Epileric does have a good point. If it has only been a few months, and comes and goes completely around the dosage increases, it's probable that things will soon settle down.

However, after reading the side effects list for it, I'd still recommend a second opinion if at all possible- if only for your peace of mind..
 
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Thank you so much everyone for your quick responses.
This is our third neurologist, and the best in the area, that's why we are trying to stick to this. We didn't start medication right after her diagnose because we were scared of meds and she had an average of 5-10 a day.
When we decided to start we found the best dr, and crossed our fingers.
I'm right on top of every single symptoms she has, and I've been taking her to the pediatrician every time. Plus, I take pictures and keep a log.
I also constantly read, but couldn't find anybody having a similar experience, that's why I'm on the forum now.
I'm trying to ponder everything because I tend to worry a lot and jump on things, so thanks again, all your advice are much appreciated.
 
It must be very worrying for you :(

From what you've said about this being the 3rd neurologist, and best in area- maybe it's worth sticking out for another month or two to see if it subsides as epileric suggests.

I realise it must be hard to watch your child go through this, but AEDs are well known for having adjustment side effects, and if they are very sure that it's not the usual type of allergic reaction- and the blood-work has been fine- then fingers crossed these side effects will subside.

You're definitely doing all the right things though. Unfortunately a big part of Epilepsy is playing the waiting game..
 
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I forgot to add, for interim treatment of the ulcers have you tried Bonjella or Frador? I prefer the Frador because it numbs the ulcer and seems to heal them quite quickly.
 
Thank you for your words Slimblue. Yes, I feel so worry that I don't know how much I can take anymore, and I'm worried to make the wrong decisions for her, so I try to think logically... I'm not a dr and I try to trust them, but at the same time I know that I'm her only advocate, so all I can do is read and read some more to educate myself.

And thank you Jenagade for your tips on mouth sore. Usually she gets a couple very small that disappear in 24 hours, and then twice, she had one in the same spot on the upper gum.
 
No problem, between braces and epilepsy meds I've become a pro at treating mouth ulcers lol. I forgot to mention if you can't find either of those even a salt water gargle helps.
 
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