Any RAS sufferers out there? (Refex anoxic seizures)

[dwardo]

Ayup all,

My little lad suffers from RAS and has done since about 9 moths old and is now just turned two. Whilst heartbreaking to watch especially for those who has not seen one before they are rarely serious (videos on youtube but not for the faint-hearted).
Most tend to grow out of it but unfortunately some carry it through to adult hood so my fingers are crossed. Sometimes he can go without an attack for days but sometimes he can have several attacks in an hour and it really wipes him out.
Now there isn't a lot of research into the condition that I can find and our GP says there isn't a lot we can do expect wait.
I did find some information on making sure he has enough salt in his diet to help keep his blood pressure up so we might try that. Currently we dont season any of our food when cooking so we might need to change that. I know too much salt is bad for us so wont be going overboard.
So the question is are there any sufferers out there young or old? Anyone any tips besides the obvious?

Cheers.

 

[atross]

Dwardo

I spent 5 years working on diagnostics to find the underlying cause of these seizures, I would recommend getting in touch with the stars charity

http://www.stars.org.uk/

Info on the charity

http://www.patient.co.uk/support/STARS-Syncope-Trust-and-Reflex-Anoxic-Seizures.htm

They are great, and have helped many families with this condition, on their website is a very good checklist of questions to ask your gp at your next follow up. Salt and counter pressures are very effective as long as you have had a correct diagnosis (I am not a medic, so please follow only a professionals advice). I would recommend calling them as they can really help you with next steps.

If you are really concerned, ask for a referral to a cardiologist spcialising in syncope (fainting to you and I) Dr. Adam Fitzpatrick at the Manchester Royal Infirmary or Dr Sanjiv Petkar are world leaders in this area and a wealth of experience. Under patient choice you can be referred to them no matter where you live, try to capture on of his seizures on camera, smart phones are great for this as it will help with the diagnosis. Also try to identify any family history of fainting or funny turns even if it great grandma feeling a little dizzy it is important info.

It is tough for a parent to know what to do but there is a wealth of support out there through the above mentioned charity.

Hope this helps, if you get stuck let me know and I can put you in touch with the relevant people

Ash

 

[dwardo]

Dwardo

I spent 5 years working on diagnostics to find the underlying cause of these seizures, I would recommend getting in touch with the stars charity

http://www.stars.org.uk/

Info on the charity

http://www.patient.co.uk/support/STARS-Syncope-Trust-and-Reflex-Anoxic-Seizures.htm

They are great, and have helped many families with this condition, on their website is a very good checklist of questions to ask your gp at your next follow up. Salt and counter pressures are very effective as long as you have had a correct diagnosis (I am not a medic, so please follow only a professionals advice). I would recommend calling them as they can really help you with next steps.

If you are really concerned, ask for a referral to a cardiologist spcialising in syncope (fainting to you and I) Dr. Adam Fitzpatrick at the Manchester Royal Infirmary or Dr Sanjiv Petkar are world leaders in this area and a wealth of experience. Under patient choice you can be referred to them no matter where you live, try to capture on of his seizures on camera, smart phones are great for this as it will help with the diagnosis. Also try to identify any family history of fainting or funny turns even if it great grandma feeling a little dizzy it is important info.

It is tough for a parent to know what to do but there is a wealth of support out there through the above mentioned charity.

Hope this helps, if you get stuck let me know and I can put you in touch with the relevant people

Ash

Thanks Ash that's great.
I found stars when having a Google last night, so will have to get in touch.
I did take a video along to the doctors with me (who Googled the condition whilst we were there lol) It is very indicative off the condition, the rigid limbs, contortions, blue deathly look and then passing out and coming round 30 seconds or so later
We also have a family history on my partners side of the much more mild conditions such as staring off into space, small episodes and luckily they grew out of it by the time they were 7-8 years old. Should have checked out my missus dodgy genetics before falling for her!

We do have a follow up with the paediatrician but she didn't have much for us besides "hopefully he will grow out of it, carry on....."
We are adding salt into his diet on the basis of seasoning and in things like olives etc,,awful things but he seems to love them. With plenty of fluids to make sure he stays hydrated. More like not leaving salt out when we cook rather than salting his food afterwards.

You mention counter pressures? Could you point me to some info on that and i will also get onto the charity.

Thanks again for this,

Leon.

 

[atross]

Leon

Give the charity a call, I would also push for a follow up with a syncope specialist who will be able to advise you a lot better than I can.

The charity will be open now if you need some immediate advice, have a look at their blackouts checklist and see if all bases were covered in your consultations

http://www.stars.org.uk/diagnosis/blackouts-checklist

Ash

 

[dwardo]

Leon

Give the charity a call, I would also push for a follow up with a syncope specialist who will be able to advise you a lot better than I can.

The charity will be open now if you need some immediate advice, have a look at their blackouts checklist and see if all bases were covered in your consultations

http://www.stars.org.uk/diagnosis/blackouts-checklist

Ash

Had a good look through the list yesterday thanks.
I will contact the charity a call tomorrow and see what practical advise they can offer. I will also be pushing for a meeting with a syncope specialist sooner rather than waiting until February when he is due another appointment with the Paediatrician.

Thanks again,

Leon.

 

[Gray]

You know you read posts like this and it just makes you realise what a great bunch of people there are on this forum

 

[dwardo]

You know you read posts like this and it just makes you realise what a great bunch of people there are on this forum

Agreed.