Son with RAS, 11 month old

[Francesca_1982]

My son Pietro is 11 months old , he had is first seizure when he was 3 months old.

When the seizure happened the fisrt time we go immediatly to the hospital and doctors said he had breath holding spells. At 5 months he increased the frequency, having 6/7 seizure a day, so we return to the hospital, EEG said it wasn’ t epilepsy.

Triggers are mostly pain, but even if he’s scared about a situation (i.d. In a restaurant with a lot of people, or leaved by the grandparents for a while) he start crying until the seizure comes.

We recently discovered Pietro has also gastric reflux (another trigger for the seizure).

In the last month Neuropsychiatrist told us about the involvement of the vagal nerve in Pietro’s crisis, instead of breath holding spells. We search online and we found STARS and video of the seizure of other child: the same and identical of Pietro.

Now we are waiting for the heart exams (holter for the blood pressure , ecg, another eeg) .

Pietro in this period had on average 3 seizure per day.

We live in Italy, people don’t know breath holding spells or RAS, expecially in baby in this early age. We would like to share this experience, maybe someone has similar situation, or advice to give.

[Stoney1]

Hi, my son is now 2, started his episodes at 4 months of age. Its is so hard for the parents to manage, because you feel so alone with it. I have found over the last 6 months, I am coping better with them in the sense less anxious. It does get easier I promise. Use the stars helpline when you need to. Sending a big hug x

[Francesca_1982 in reply to Stoney1]

Thank you so much for your words. It seems less harder when you find someone to talk about it , who knows the situation. I hope your son is getting better. Take care too.