Side effects

I must say that we have been really lucky when it comes to Isa’s epilepsy medication, we started with Keppra and soon moved into Topimax (topamax). Keppra didn’t really worked, the seizures never stopped and we found ourselves with an 8 month cranky girl who was feeling and being miserable all the time, I had read about the side effects on Keppra and read all the comments about toddlers becoming little monsters having mood swings etc, so I was kind of prepared. At that time it made me really sad to see her so cranky since the moment she opened her eyes, she has always had this 30 minutes right when she wakes up, when she is absolutely adorable and loves to cuddle up with you and smile and be happy while still in bed, but when she was on Keppra, those 30 minutes were gone, she basically woke up  crying and miserable and the seizures were still coming 6-10 times a day, plus it was almost impossible to make her drink the Keppra, she could smell it from far away and would throw up after drinking it. We talked to her neurologist Eva and she decided to try something new, so we started the weaning process with Keppra and started a new medication, Topimax. By the time she reached the full dose with Topimax, the seizures were gone, she was happy again and everything seemed to go the right way.

As always, I did my research on Topimax and came across a few things about toddlers having less appetite and loosing weight with it. But hey!, there had to be some side effects with it and as long as she was happy again, Isa eating a bit less was not such a big deal. Eva did say that we had to keep an eye on her and her gain weight. I noticed how her appetite decreased right away, from eating a big bowl of oatmeal and a banana in the morning, she went down to eat half of it and so she did the rest of the day, just eating less of everything, I accepted it and just went on with it.

The last 2 months we have seen a more severe decrease on her appetite, she has also been constantly sick since she started day care, constantly having a cold, a cough, fever or something, so we were just thinking that she was eating less than normal because she was not feeling well, but then on those days when she seemed good and healthy she was refusing to eat too and I mean refuse eating all the way, she has been basically living on smoothies that she drinks throughout the day and a few spoons here and there. I have been feeling so worried and mortified over this whole thing, I know she has lost some weight, she looks tiny and skinny and can’t even look at a spoon coming up her way, she just turns to the side and not even a miracle makes her open her mouth. I don’t want to change her medication since it works good with her seizures, but I wanna see my daughter eat, get stronger and healthier, I have been feeling in between two walls not knowing what to do. We have an appointment at habilitering next Monday with one of her physiotherapists to check into her goals and improvements and to talk about this to get an appointment with a dietician. If that doesn’t help we will talk to Eva to see what she thinks about this problem with Topimax.




6 thoughts on “Side effects

  1. Hi there,
    Little Isa is a fantastic girl. I have not seen her cranky but I can sure understand your feelings about her weight loss. I have been struggeling hard with one of my children and I can sure understand your mixed emotions when it comes to her mediciation. Love to the three of you ! ❤

  2. We were on Topamax but are weaning off it onto other stuff (epilum) which has worse side effects! But Grace had the same problem, she hasn’t gained a single gram the three months or so she was on it. That includes a month of when we were on steroids and topamax! I had a very good speech therapist that explained to me that Grace (who isn’t mobile) doesn’t have a lot of muscle. Muscle weighs more than fat and that is why her weight has stalled. So don’t worry too much avout the weight. I think that will come in spurts, just be ready with the food for when she has a spurt! Kids also go through phases, all of them do 🙂 Isa looks great and happy and I would take an underweight happy child over the seizures any day!

  3. I’ve been thinking about you guys as Lydia’s appetite has been voracious with the steroids. Her docs have her on a diet and it is so hard to limit her to 20 ounces. She just cries and cries for more. So I guess the grass is always greener, arg. Anyway, when my son started daycare and was sick all the time he didn’t like to eat either. And most kids go through periods of seeming to live off of a few peanut butter crackers and a handful of raisins for a while (or whatever – maybe those snacks are my weird upbringing?). But let us know how the appointment goes. I’m curious if they think it is the Topamax or just a normal phase. I’m hoping for normal phase for you. 🙂

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