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I am not the one with seizures, my 5 month old is. We started noticing them when she was 4 months old. She had the first noticeable one in the bath. Then again a week later while eating and falling asleep. The next one was the day after. I took her to the ER, because she had two in the same 24hr period. She had a CT scan, chest xray, and blood tests, all came back normal. The ER doctor talked to the Neurologist at the Children's Hospital and he put her on Keppra 0.6ml twice a day. We saw the Neurologist the same week, and he ordered an EEG and an MRI. She had the EEG the same day, which came back normal. She got her MRI yesterday which also came back normal. In the time period between her Neurologist visit and her MRI she has had 8 seizures. Usually she has two in the same 24hr period. I called the neurologist who bumped up her medicine to 1.2ml twice a day, then she had 3 in the same 12hr period, and she got her medicine bumped up to 1.5ml twice a day. All this before her MRI. The neurologist says we will discuss what to do for her when we have our appointment with him in November. I don't know what to do for her or how to feel about everything. Will all the tests coming back normal, then they might take away her medicine, and with her still having them on the medicine, I don't know what to do. I know she has been having the seizures, I have seen them, my husband has seen them, my brother, and my mother-in-law. And people have seen how she reacts afterwards. She is not herself after, she is confused and miserable, and pale, and out of it. What do the Neurologist usually do after those tests, and what do they do if the tests come back normal? Anyone know what her future will hold, if they are sure to go away or to stay? Or have an idea? I am scared for her, and am scared that the Neurologist won't believe me anymore, and that they will just take her off her medicine, and she needs it.
 

N Sperlo

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Hi timbrezlomke,

You're obviously under a lot of stress and worry. I'm sure no one can blame you of that.

Let me get straight down to what appear to be the main worries.
Just because the tests come back normal, doesn't mean much. I have seizures and they have come back normal. Sometimes more review is needed. For instance, my EEG may come back normal, but after a second review, it was shown that behavior was suspect of a seizure. In your daughter's case, the doctor may need more tests, longer tests, or something else.
In many cases, we don't know when, how, or how long withe epilepsy or seizures. We don't know exactly what will happen.
I doubt the doctor won't believe you. If you feel there is a problem with the doctor, remember that you hired them and you can fire them. Feel free to find another.

I know nothing I can say will make the mother of a newly born feel better in a time like this, but I hope things go as well as they can.

Good luck
 

chmmr

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So sorry to hear about your little one. I know first hand the difficulties in communicating things to doctors about suspected seizures in babies and how much more complicated that can be when most of the tests come back normal.
What kind of seizures is your baby having? Have they given them a name? (myoclonic, tonic clonic, complex partial etc)
If the current meds are not helping at all, they very well may suggest switching medications. Have they tested her for a pyridoxine (B6 ) deficiency? It's more rare but just requires a urine sample to be sent to the lab and is very easily corrected (that was one of the first things my dr tested for and because the test results take a long time they put my daughter on B6 liquid while we were waiting). Definitely worth asking about if nothing else.

I know how torn you feel about having them on meds that don't work but keep in mind as well that the anti seizure meds can also affect development so if it's not helping, it's far better (at your doctors suggestion obviously) to not be on them, or to change them. Also not sure if you are in canada or the US or elsewhere but i would suggest getting her on a program to monitor her development (in Canada it's through our health system, in the US i think they call it early intervention). That way if the seizures (or the meds) cause any problems, they can quickly be addressed and monitored.

Lots of children do grow out of seizures, but it really is hard to say at this point.
 

Nakamova

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Hi timbrezlomke,

Your neuro should be able to make a diagnosis of a seizure disorder even if the EEG doesn't register the seizure activity. But it can't hurt to keep a detailed diary of your daughter's episodes, so the neuro knows how often they are happening and how they have responded to the medication. If you are able, you may want to try and videotape the seizure, so the neuro can see exactly what happens during them.

The neuro should be responsive to your concerns, and should place the weight of diagnosis on the clinical evidence -- the actual symptoms your daughter is experiencing. If you aren't happy with the neurologist's response, don't hesitate to get a second opinion. It can't hurt, and it may well help in terms of your daughter's care, and your own peace of mind.

It can be very difficult to predict the course of epilepsy, because it really is a loose term for a multiple forms of a disorder that have multiple causes and prognoses. As chmmr says, many children do grow out if it.
 
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