13 Year Old - Diagnosis of Syncope

[Cath_C_Mumof2]

Hi I'm new here as my daughter has been diagnosed today with Syncope (possibly RAS). We are struggling and I hope that there are others on line that can help me. We recently paid for a private cardiologist, during this we had a 7 day monitor to which we had a number of the faints/dizzy spells but the cardiologist saw it as normal. However today we have seen a neurologist, given her symptoms and a blood pressure test he did 87/55 on sitting down and 88/55 after standing up then he has diagnosed her as having Syncope. As it is syncope the neurologist has said that they do not deal with this and have discharged her back to the GP. I have been reading up on Syncope and everything I have read "fits" with the symptoms my daughter has but surely it should have been picked up by the cardiologist on the 7 day monitor or have I missed something? We are struggling to deal with the symptoms, on a bad week we are lucky if she is at school for more than 2/3 days, she can faint up to 9 times a day. When she is at school I do not think she is working at more than 50% due to generally feeling unwell. She is scared to go out with friends, can't dance which she loves, it is seriously affecting her life. I would love to hear from anyone on what we should be doing next, how do we get her the help and support she needs. Thanks in advance for any help or advice.

[Willow2627]

Hi Cath unfortunately I can't help with any answers for you but I just wanted to say hello from another concerned Mum in a similar situation and know how scary it is. My 13 year old son is currently being investigated for RAS and like your daughter it's really affected his confidence and he's had to stop the sports he loves, temporary I hope. He recently lost 5 weeks of school. He'd only just started to gain some independence. Now he wears a medical alert bracelet which gives us a bit of reassurance and him a bit more freedom. My son also has low blood pressure and due to have an extended blood pressure monitor and EEG. His 24hr cardiac monitor didn't show any concerns. I hope you get some answers soon and I'd love to hear how you and your daughter get on.

[Cath_C_Mumof2 in reply to Willow2627]

Thanks for your response. It is very scary and the worst is that we cannot wave a magic wand and make it better for them. Lauren has had to stop/minimise her sports also. As you say though it is the confidence that they lose in themselves is dramatic. She has been ill on and off for 5 years now and this is just another problem for her to cope with. The other issue is their friendship circles, because they are at school irregularly teenagers move on quickly and close of the group so she finds it very difficult when she is at school as she seems to have lost this. We cannot out of school try and get the friends back as she is not in a fit and stable position to organise anything. Hope your son gets some answers soon. I will keep you informed how we are doing. Catherine

[Lynneporterjack]

Hi. I'm afraid I don't have any answers for you, but I can sympathise with your situation. My 13 year old son has been having up to 300 syncope episodes, or drop attacks a day since February this year. He has been in hospital four times and has had blood pressure monitors, ECG, MRI, narcolepsy tests , EEG and also glucose tests, all within normal limits. He had a previous medical issue which caused acute pain, which was managed by pain killers which has been blamed for the initial cause, however it has continued even though he is no longer on any pain medication. He is due to have a Tilt table test done to rule out heart problems. He has also been referred to CAMHS.

He has not been able to attend school since they started, however the educational welfare officer was able to refer him to medical access to education, and he has access to on line education which is not ideal, but better than nothing. I would recommend considering CAMHS as it has helped my son to talk about how much of an impact these episodes have had on his life and has helped with coping strategies for him too.

I hope things improve for you soon, and although initially I didn't think I could cope, it's amazing what you can get used to. It is easier for me as they are so frequent, I at least know he will be having multiple episodes where as you don't know when the next will happen. It sounds as though you have done everything you can, just remember to look after yourself too. Best of luck

Lynne.

[Lynneporterjack]

Hi, sorry, me again. I just wanted to add, I'm happy to be of any support I can to you or anyone else in this situation. I can't offer medical advice but I know how scared I was initially. My lowest point was when I found myself hoping they would find a problem on the MRI just so we'd know what was wrong.

All the best,

Lynne

[Cath_C_Mumof2 in reply to Lynneporterjack]

Lynne

Thanks for your response and letting me know how it is for you and your son. 300 a day is a scary number. We are in the hundreds since February but not as high as this, it has such a physical effect on their body it is just unbelievable so I cannot imagine what he is going through. We are hopefully being referred to the Syncope centre in Nottingham who can help and support us on this. I know what you mean by the MRI I wanted them to find epilepsy or something that is treatable, controllable and manageable. The situation with Syncope sounds more unknown with little ways of managing it, however hopefully 17/18 years old they will have grown out of it however that does not help them with some of the most critical years of their life. I will definitely look at getting CAMHS involved in this although I have to say school have been good with her since we explained the situation, they take her to/from class, she starts a little later, finishes a little earlier. In September we are hoping to let my daughter be a little more independent but being able to call on support when she needs it. One of the factors that had been picked up on by school is that she did have a number of attacks in lessons with sensitive subjects - halal, WW2, sex etc, Reading up on syncope attacks this is now makes some sense as to the attacks so there may have to be some rethinks on the type of content that she is faced with initially until we have it more under control. Good luck with your son.

Catherine

[Willow2627]

Hi Catherine

I thought I'd update you on my son following all the investigations. He now has a diagnosis of RAS and the cardiologist has started him on a very low dose of midodrine. Although it's only been 2 weeks I think I can see a little improvement, fewer dizzy/loss of vision spells and he hasn't blacked out but it could also be that we are inbetween clusters. He also seems to be a bit less fatigued. I'm dreading the return to school next week although trying not to show him as he's very anxious about it. School has been problematic after my husband and I were called to collect him one day because he was not responding and found him unconscious slumped at a desk. Staff hadn't checked if he was conscious or not but the cardiologist is writing to school to explain everything clearly so hopefully everyone will understand better. It's interesting what Lynne said about certain lessons, my son has to leave some biology lessons, reproduction, anything with blood etc. The doctor has said he can return to sports which he is hapoy about but must not push himself too far & rest a lot. How is your daughter and the assessments going?

Lynne how is your son?

Lorraine

[Cath_C_Mumof2 in reply to Willow2627]

Hi Lorraine

Thanks for your response. It was useful to read you sons story. You will have to keep us informed how the midpdrine goes, like you I am also dreading school next week. Not sure if I mentioned it before but she is likely to have a blackout if I tell her off (seen now a few times) which may also be another reason why she is struggling at school! We have an appointment through for the syncope clinic in Nottingham for later this month so let's see how this goes and how long it will take to get an official diagnosis and help to control and manage the situation.

Will update soon hopefully.

Good luck with next week

Catherine

[Willow2627 in reply to Cath_C_Mumof2]

Hi Catherine, good luck with your appointment and I hope your daughter settles back into school okay. I wonder if it's a common theme, my son blacked out at school when he couldn't find his homework in his bag and the teacher told him off! Anxiety is a daily struggle for him but RAS adds a whole new dimension. Now he's anxious about being anxious. Good luck to us too!

[Cath_C_Mumof2]

Just to update on this feed we have now been to Nottingham to the syncope clinic and we are now waiting on EEG and Tilt table test for her to help to confirm her diagnosis. We have been told though in the meantime to do a number of things, one of this is to increase her salt intake to 6mg per day. Can I ask advice from others who have had to do this and how they have done this through diet rather than sodium tablets as we are struggling with this currently!

[nickitate82]

hi my son 11 has just recently been diagnosed too and we are really struggling hes on reduced timetable at school and blacks out atleast 3 times a week its so hard z

[Rohman1]

Have you thought it might be anxiety related? Is she mostly fainting at school?

[Helpmeplease453]

Hi Cath, I can only pray you have found some answers by now for your 13 year old. If you have not please contact me email. [e-mail]. I wanted to mention this in case anyone out there may be reading and SALT is what is needed to help stabilize this BP, but this will require more. POTS is not nearly recognized enough and I have been through hell to find these answers to my own life that also treckled down to my own son's life. I am now an advocate on helping with this kind of problem. There is hope. No matter what they have told you. I am living proof. I hope this letter finds your son all well and completely not needing any advice since this was 3 years ago but just in case it hasn't please email me and I will try to answer any questions I can to help. Sincerely, Jojo