New to this. Need advice on my 19 month old.

[Chanel]

Hi, I am new to this forum and decided to join to try and get some insight to what has been happening to my daughter. We live in Ireland.

I have three children, a daughter aged 4.5 years, another daughter aged 19 months and a son aged 12 weeks.

My 19 month old daughter has had five seizures in total. Her very first seizure happened in the back of the car. I didn't know what was happening. I thought she was going to die.

I turned around to look at her and her eyes were staring, followed by the rolling back and her arms and legs went stiff and she was jerking. She went blue around the mouth. I rang an ambulance and she was bought into hospital. She was admitted and had a second seizure on the ward. This time she was playing and then she just dropped to the floor. Having the same seizure as described.
Before her first seizure she had a runny nose two weeks before hand. She then vomited during the night two days before, and vomited the morning of her seizure.

She has had every test going. She had a ct scan, MRI, sleep EEG, xray, bloods, lumbar puncture. Everything is normal. She never had a temperature during her seizures so they are afebrile seizures.

She was then let home and we were told that some children have seizures and never get them again. On discharge she was prescribed midazolam.

She was fine for about two months. Then the same thing happened again. She had a runny nose, NO temperature, started vomiting two or three days, then we woke up to her seizing in the bed. We bought her to hospital, they sent her home, she seized in the car, so we had to go back to hospital. Then she was let home the following day, and she seized outside the hospital. She was admitted again and was started on Epilim.

We still don't have a diagnosis. We still don't know why she had these seizures.

She has been ok since the last episode. Apart from she isn't gaining weight and her stomach is swollen. She is waiting for an ultrasound on her stomach and she is being tested for celiacs disease. We are also waiting for an appointment with a neurologist.

The seizures that she has had are always the same. She was fall, her eyes roll back, her body goes stiff and her fist go into her chest and she jerks, her mouth goes blue and they last about 2-3 minutes. She also makes a noise (you know like when the tv loses signal and you get that black and white screen, and it makes that noise).

Is there anyone out there who knows what might be going on? Anyone have any experience or similar stories?

I'm tired of not knowing whats going on.

Thanks you.

 

[Nakamova]

Hi Chanel, welcome to CWE!

The seizures your daughter is having follow the traditional pattern for grand mal seizures (also known as tonic-clonic seizures). There's often a scream or shout at the beginning -- it's actually a sharp intake of breath to send oxygen to the brain -- and there can also be noisy-snoring-like breathing afterwards. The blue lips are also a sign that oxygen is being sent away from the extremities and up to the brain, so although it looks scary it's "normal" for this kind of seizure.

I'm sorry you and your family are still struggling to find a cause for your daughter's seizures. The negative EEG doesn't necessarily rule out a seizure disorder, since it's not unusual for EEG tests to come up clear, especially in children. I think it is possible that celiac or some other metabolic issue may be playing a role. Both celiac disease and vomiting can lead to electrolyte imbalances which in turn can cause to seizures.

It can help to keep a journal, just to keep track of how she does on the medication, and to note any symptoms if she continues to have them. I hope the Epilim keeps her seizure-free -- keep us posted.

Best,
Nakamova

p.s. We have several other Irish members -- you're in good company!

 

[JaneC]

Hi Chanel, I'm just over the water and up a bit in Scotland. Sorry your family are going through this. The seizures you describe your daughter having are very much like the tonic-clonics my daughter had when she was 11/12, down to the blue lips. They're very scary and I was glad I'd seen someone have them before, rather than my first experience of them be with my child.

We were "lucky" in that Rosie was very quickly diagnosed via EEG as having epilepsy. At least we knew what we were dealing with. I hope you get answers soon and I'm sure you'll get lots of help on here x

 

[katzy]

Like Nakamova and JaneC said they're tonic-clonic seizures, I've had them since I was 13 til I was 15. My parents were terrified one day when they saw me having this seizure. That's the nature of tonic-clonic seizures the people watching it get scared, but the person having it won't feel a thing! . Nice to hear that Epilim is controlling her seizures. Ask your extended family for a history of seizures, it would be helpful for the neurologist.

My neurologist also did 2 regular EEGs only to find out they came all normal. I had to do a 48 hour video EEG to locate where my seizures were coming from. So be strong you'll have a diagnosis.