Anyone with an infant with Epilepsy?

[MandM-Mom]

DD 7 months (down syndrome) was finally diagnosed with a seizure disorder about 3 weeks ago after 5 months of seizures an EEG (4th EEG) finally showed some spikes coming from the right side. We are now on Trileptal and after a few changes in dosages we are finally seeing some improvements. She has just in the last few days started to make her first tries at putting her hands up to her face....wondering if the daily seizures were holding her back? Anyone have any similar experiences with infants with seizure disorders.

 

[SueM in MN]

DD 7 months (down syndrome) was finally diagnosed with a seizure disorder about 3 weeks ago after 5 months of seizures an EEG (4th EEG) finally showed some spikes coming from the right side. We are now on Trileptal and after a few changes in dosages we are finally seeing some improvements. She has just in the last few days started to make her first tries at putting her hands up to her face....wondering if the daily seizures were holding her back? Anyone have any similar experiences with infants with seizure disorders.

My DD did not have her first seizure until she was about 8 yrs old, but in 'another life', I was a Public Health Nurse and worked with families with young children with disabilities.
You are right that daily seizures can hold a child back. Often, the child is spending so much of their awake time recovering from seizures, they are not alert enough to be doing the things babies normally do.

 

[Tiggerific711]

DD 7 months (down syndrome) was finally diagnosed with a seizure disorder about 3 weeks ago after 5 months of seizures an EEG (4th EEG) finally showed some spikes coming from the right side. We are now on Trileptal and after a few changes in dosages we are finally seeing some improvements. She has just in the last few days started to make her first tries at putting her hands up to her face....wondering if the daily seizures were holding her back? Anyone have any similar experiences with infants with seizure disorders.

I think the daily seizures were definitely holding her back!

My DS was probably having seizures since he was an infant. He always did this funny thing with his eyes but they were so mild that he wasn't diagnosed until he was 28 months. He has always been delayed in meeting his milestones. Even now at 6 1/2 he's about a year and a half behind kids the same age as him. He has also been diagnosed with PDD but his neurologist thinks that this was more of a learned response to the seizures. While he never had any seizures that lasted longer than 10 seconds, he was having at least 30 to 40 seizures a day. He started taking Lamictal in October, in addition to the Neurontin and Zonegran he was already taking (he started having breakthrough seizures after a year of being seizure free). We didn't realize how much of a fog the seizures were putting him in until he started making progress again. He's still having seizures but at least he not regressing and started making progress in school again.

By the way, I see you're in upstate NY. We're in Clifton Park, about 12 miles north of Albany. Are you near us?

 

[MandM-Mom]

I think the daily seizures were definitely holding her back!

My DS was probably having seizures since he was an infant. He always did this funny thing with his eyes but they were so mild that he wasn't diagnosed until he was 28 months. He has always been delayed in meeting his milestones. Even now at 6 1/2 he's about a year and a half behind kids the same age as him. He has also been diagnosed with PDD but his neurologist thinks that this was more of a learned response to the seizures. While he never had any seizures that lasted longer than 10 seconds, he was having at least 30 to 40 seizures a day. He started taking Lamictal in October, in addition to the Neurontin and Zonegran he was already taking (he started having breakthrough seizures after a year of being seizure free). We didn't realize how much of a fog the seizures were putting him in until he started making progress again. He's still having seizures but at least he not regressing and started making progress in school again.

By the way, I see you're in upstate NY. We're in Clifton Park, about 12 miles north of Albany. Are you near us?

We ourselves thought for such a long time that they were siezures but we were seeing a neurologist that was so insistant on it being reflux that we ended up having to switch neurologists so we could get some answers, it makes me sad that if we would have gotten this under control maybe she would be closer to a 7 month old in her fine and gross motors. I know she will most likely have the delays from the downs but I don't want the seizures to make things any harder for her. She is now on Trileptal and after a few weeks of breakthroughs on that they finally got her dosages and its been a week and a half with no seizures, and before most days was about 3 or so lasting aprox. 1 minute. The seizure part was not scarry part but the turning grey and blue around the lips terrifies me.

Yes we are near, we are in the Greenwich area, a bit East of Saratoga.

 

[Tiggerific711]

We've often thought that if we had caught DS seizures earlier than things might have been different for him. He'll always be behind kids his own age but at this point we really don't care. He'll never be a brain surgeon but he's such a sweetheart with a great sense of humor, he's such a joy. And it could be soooooo much worse - at least he can live like this!!!

Have a great weekend up here in the great white north!

 

[mommie2angels]

Wow Tiggerific! I love how you put that!

MandM-Mom, we have two daughters that have epilepsy. Our dd#1 had her first seizure when she was 3 days old. We thought that they were being controlled and that she was having apnea. Actually she was having seizures, turning gray and blue and all that.

Our dd#2 had her first seizure when she was 3 weeks old. I am not sure that we would have known what it was if it had not been for dd#1 having them. She stopped doing things she was doing before the seizures. When we got them under control a little she started smiling and doing things again.

I hope that the meds help your dd. Getting those adjusted to the right dose can sometimes be so hard. I am so glad you stuck with it when you knew you were right.