8 month old, Reflex Anoxic Seizures. anyone with any experience/support?

[twinkle93]

Hi my name is lauren, I have an 8 month old daughter named Rosie.
I posted here all the time during my pregnancy and found the support was amazing (I had complications, to say the least!) So Ive decided to post now, as the condition seems to be rather rare.

My daughter had her first seizure 3 weeks ago. It was the day that we moved house and she was in my aunties care. They were rather traumatised by the event. Last week she had 6 in one week (even 2 in one day)

The seizures seem to start with a breath holding attack but then she goes floppy and stops breathing. She turns deathly pale with black eyes. Her eyes will be rolled into the back of her head. She will start grunting and in the last one her wrists were twisted in. They last about 3-5 minutes. And they are so scary.

It is so hard to watch your baby stop breathing, and look dead. But we have been reassured if it is this Reflex Anoxic Seizures that she will always start breathing again.

The consultant didnt do the EEGs, ECGS and every other test that the paediatric doctor said.

Is there anyone who knows about this?
please reply

 

[17thy]

Hey there, my daughter has something similar, she has seizures brought on my anoxic anoxia. She turns blue and passes out, eyes rolling back in her head and then proceeding into a seizure, her limbs stiffen and she has a big blank stare before she starts breathing again. These started around 9 months for us.

She has them several times a month (and she's 16 months now). They are still just as scary as the first time I saw it, and still brings me to tears sometimes with really bad episodes. We only know now to lie her flat on her back and just comfort her through it. It is absolutely heartbreaking. We had an EKG done with her and it came back normal. They didn't do an EEG. They haven't done or said much about it since I originally brought it up. My pediatrician doesn't seem to know much about it other than "they will grow out of it by 8 years old." I saw a different doctor in our office who asked us about it and said she was concerned that LO was actually passing out, but it never went any further than that conversation.

I've done a lot of my own research, but like I said it was for seizures related to anoxic anoxia. Not reflux anoxic seizures which I know usually result from pain, or loud noises, surprise, etc. If you have any other questions feel free to ask and I can try to answer them.

 

[Midnight_Fairy]

Sorry I can not help xx

 

[tcasl123]

Great information, all approved by medical experts, can be found at STARS = Syncope Trust And Reflex anoxic Seizures - great web site
This group was set up by a mum whose daughter was diagnosed wit RAS and at the request of a paediatric consultant. The information on this site has all been approved by experts in this condition and endorsed by medical societies. There is also a forum to speak with other parents who are learning toi live with RAS.
Good news - no long term damage and the child will alwasy recover however it is important to ensure ECG ha sbeen carried out to ensure there is no other underlying heart rhythm disorder.
They also offer 24/7 helpline where you actually speak to a real person or they call you back quickly if lines are busy.
Well worth visiting the web site

 

[17thy]

^do you have the link?