Need Help, 3yo daughter diagnosed with epilepsy 5 months ago, and all of a sudden cannot walk

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This is my first time here at Epilepsy.com and I am looking for help. A little background on my amazing little 3 year old daughter. When she was 15 months old she had her first febrile seizure. When she was 18 months old she had 2 more with in 12 hours of each other. Then again at 2 she had another. At 2 years and 7 months, she had her first major seizure episode without a fever. In a period of two hours she had 11 back to back seizures and stopped breathing for more than 30 minutes. They were about to intibate when she finally began to breathe again. They put her on Keppra imediately following this and she had a horrible reaction to it. She sat and screamed and hit us over and over again for more than 12 hours. They then put her on lamictal. That was 5 months ago now and she has not had a grand mal seizure since. She does however now have the jerks and twitches all night long, and we will be having a sleep deprived eeg here in the next couple of weeks to see if these are true seizures or not.

Now..... for the last couple of days she had been tripping a lot. I am clumsy as is she, so we chalked it up to that and didn't think anything of it really other than she is an extremely active 3 year old. Then yesterday afternoon it began to get worse. She was tripping every few steps, so I said something to my husband about being worried about it and had her run down the hallway to see if she did it again. She took three steps and fell face forward onto her knees. It looks like her legs are giving out on her. It is like her body keeps going but her legs can't keep up. It does seem to be worse on her right side than her left. This was around 8pm last night. By 10:30pm it seemed to be worse and happening even more frequently. When we got up this morning, She couldn't really walk at all. She can't explain to us yet what she is feeling, she just stands there crying saying she can't walk. It is like she has no muscles left in her legs to lift them up or move them. We have called both her neuroligist and her primary care dr this morning. The nuerologist's nurse says that this has nothing to do with a seizure or her meds(I don't believe this!), and told us to go and see her primary care dr, so we have an appt this afternoon with her primary care dr. I am just scared in the meantime while we are waiting for this appt and was wondering if anyone might have any thoughts or experience with anything similar to what we are seeing with her. I really appreciate any help or wisdom in advance.

Thanks so much!

Comments

Re: Need Help, 3yo daughter diagnosed with epilepsy 5 months ago

Submitted by Nerak95 on Tue, 2013-07-16 - 21:52

Lamictal can cause ataxia and muscle weakness. It's listed as a possible side effect. It's probably not common but it was evident in the clinical trials, if not, after market experience. Side effects like this are often indicative of too much medication. I don't want to say that this is likely the case with your daughter but I think it is something that should be ruled out. If your neuro would agree to lower the dose a bit to see if there is an improvement, then you might have hit the nail on the head. But don't try this on your own. Consult your physician first. I think it was unprofessional for the nurse to make the assessment that the problem that your daughter is having isn't related to medicine or her seizure disorder without seeing her.

Another idea that came to mind was if she is on the generic version and if there was a manufacturer change. It's not unheard of for someone to experience problems when switching to a different manufacturer of a generic medication.

Lastly,there is always the possibility that the pharmacy may have inadvertently given your daughter a higher concentration. Look at the pill and see if you can ID the medication.

When my daughter was on Lamictal she experienced an increase in seizures. I wonder if this is the same thing that might be going on when you say that now she's having jerks and twitches all night long.

I know by the time you read this you will already have had the visit to your pediatrician. If he hasn't already done so, I would ask that labwork be done. Sometimes if there is something going on, it can be indicated by the labwork. I'm curious to what your pediatrician had to say.

Always listen to your instincts. These drugs can work wonders for everyone but only when they're used wisely.

Karen

Lamictal can cause ataxia and muscle weakness. It's listed as a possible side effect. It's probably not common but it was evident in the clinical trials, if not, after market experience. Side effects like this are often indicative of too much medication. I don't want to say that this is likely the case with your daughter but I think it is something that should be ruled out. If your neuro would agree to lower the dose a bit to see if there is an improvement, then you might have hit the nail on the head. But don't try this on your own. Consult your physician first. I think it was unprofessional for the nurse to make the assessment that the problem that your daughter is having isn't related to medicine or her seizure disorder without seeing her.