Any suggestions?

[Lynneporterjack]

Hi all. My 13 year old son is having in excess of 250 black outs a day. This started 3 months ago and has increased to this level. He has had MRI, EEG, blood tests, plus 24 blood pressure and heart monitoring, all results are within normal limits. Now refereed to psychologist, but they do not think it's anxiety based, but medical. The blackouts have not increased in frequency for 2 weeks, and usually last between 3 and 30 seconds. I'd be grateful for any suggestions. Best wishes, Lynne.

[burge793]

Hi Lynne. 

Has your son been checked for POtS? I had CFS which lead me to become deconditioned and lead to POtS. It was picked up by my CBT therapist, I was referred for a table tilt test and diagnosed the same day. This condition lead to me constantly passing out when I stood up and also a couple of  seizures. Hope your son feels better soon. Lisa

[Lynneporterjack in reply to burge793]

Thank you for your input, the blackouts have got worse since posting and I have a doctors appointment today, so it is good to go with a suggestion. Thank you again, and best wishes to you. X

[vickyb5277]

I second Burge793, ask for a TTT, I was misdiagnosed at 16 (now 39) & only diagnosed from having the TTT in Dec last year that my cardiologist sent me for. I have Vasovagal Syncope not POTS & my faints bring on seizures lasting anything from 30 seconds to 9 mins (my last one). he also thinks my heart stops when I faint so I have an internal ECG type thing inside my chest ready for my next faint which will then help him decide if I need a pacemaker. Good luck & much love to your Son, It's very scary at any age so I really do feel for him xx

[Lynneporterjack in reply to vickyb5277]

Thank you for your input. I really appreciate your comments and suggestions. I wish you the best for the future, and I will post again once I have spoken to the doctors. X

[missdizzy2015]

I think this can be POTS.  Postural orthostatic tachycardia syndrome.  It often occurs in puberty.  He should be cheched with aTilt table test. 

Wish you luck. 

[Lynneporterjack in reply to missdizzy2015]

Thank you for your message, i will suggest it to the doctors, and hopefully get some answers soon. Best wishes x

[gailstewart]

hi linda has he had a tilt test yet that will tell if he has low blood pressure ..thats seems quite alot of episodes in a day  he must be tired bless him ..my son adam has blackouts everyday. my son sees a psychlogist to the one adam has is very good ..we was told it is to do with puberty and adam has thyoid probelms hope he get alright  all the best xx

[Lynneporterjack]

Thank you. No he has not had a tilt test, so that's something to ask for. It may be anxiety based, but he is having so many black outs, I can't get him to camhs appointments anymore. I hope all goes well for your son, and thank you again for your input. Best wishes. X 

[madramblings]

Best of luck. It's scary I know. 18 months ago I was where u are with my then 14 yr old daughter. She was eventually diagnosed with RAS (reflex anoxic seizures). Has been controlled with midodrine. And she hasn't seized or blacked out in 12 months - apart from once when she didn't take her meds!