Vasovagal syncope? Help.: Hi I have a 14 year old... - STARS

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Vasovagal syncope? Help.

Rachelldicker profile image
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Hi I have a 14 year old daughter, she's a has fainted 40 times since Nov 22nd. This is only happening while she is away from me at school and has happened a few times at church. She has had a 24 hr ecg and fainted 3 times with it on, they said it showed some tachycardia? But looked normal otherwise. The peadiatrition said there is nothing we can do for her and given her a few techniques to do if she feels faint. School have refused to have her in until now as they say she is a health and safety risk. They wanted to put a medical plan in place first. They are now letting her in 2hrs of her choice a day but if she faints twice I have to pick her up, I'm trying to hold down a full time job. She just wants to go in full time and be treated 'as normal'. I'm inclined to think after talking to STARS that this is more like phsycogenic blackouts. It didn't happen at home over Christmas for 3 weeks and starts again as soon as she is in school. I don't think school know how to deal with it. But she has been out of education since Nov apart from a few bits of work school has sent home. I need to go in and help put the medical plan together for the next week, any suggestions? The doctors haD said they thought it was vasovagal syncope.

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Rachelldicker
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Lynneporterjack profile image
Lynneporterjack

Hi, I can relate to your story. I have a 14 year old son who has been having black outs every day for nearly a year. On a good day it's about 50, on a bad one it can be over 300. He has not been able to attend school for that time either. He has a painful growth disorder which he has had for the last 5 years, and had a bad reaction to pain medication which initially was to blame, causing a drop in blood pressure. He was weaned off them, but it hasn't helped. He had a tilt table test, which diagnosed vasovagal syncope, however it has been determined that the majority of blackouts are not due to the vasovagal syncope, but are conversion symptoms due to the pain. In my experience, the medical profession need to rule out any medical issues, so be prepared! Jack has had EEG ECG MRI blood pressure monitoring to name a few, along with narcolepsy testing and visits to UCL and royal brompton hospitals, and we are now seeing camhs regularly. I would suggest speaking to the school's senco or pastoral department, as Jack now uses medical access to education online. The senco should be able to refer you to a camhs service, or at least point you in the right direction. I also understand how hard it is for you too. I have had to leave the job I had to care for him, which makes things harder not only financially, but socially too. The very best of luck to you, and feel free to contact me if you want, I may not be able to help much, but at the very least, I understand. X x x

Cath_C_Mumof2 profile image
Cath_C_Mumof2

Hi I have a 13 year old daughter that is constantly fainting, she can faint over 40 times in one week. So far we do not have a physical diagnosis - still waiting and we have been going through it for over a year now! What I will say is that when she is well enough school want her to be there. They have provision in place that if she is not well she will be walked to/from class. If she does not feel well enough to be in class then she can go to the mentor provision to continue with lessons. Yes they are a health and safety risk particularly if they don't know that they are going to faint however who knows how long it will last therefore life has to continue as much as possible. What I will say is that at the moment it just seems to be very progressive where she used to miss a day or two a week of school to basically now having the majority of the week off. Ensure though that not only do they put a good provision in place when they are in school but also when they are not well and cannot attend. So far my daughter does not have a medical plan in place but we are hoping to do this once we have diagnosis. We will also apply for extra time etc for her GCSEs aswell. Good luck and I hope you get somewhere. x

Bazbunny100 profile image
Bazbunny100

I feel for your daughter . It is frustatrating! I have warnings but need to lie down for an hour to stop myself fainting . I'm not sure what to suggest . Does she have any particular triggers ? Could she lie down during the day at school so she rests when not doing her two hours ??? I know she'd hate that maybe she could then work in the medical room and gradually increase time in classroom . They'd have to send her sufficient work then for each session. I'm a teacher and school don't appreciate my issues either . V difficult to explain to someone it's not happening to . Difficult to prove I can do my job. I desperately want to !

euny profile image
euny

water is the answer to our many health problems- which water m l talking about? reverse osmosis purified water with pure coral calcium (LLC pure coral calcium with the living matrix in it) to put back the life and conductivity in it. Give the body what it needs to heal from within- nutrients- vitamins, proteins, carbohydrates, minerals, essential fatty acids, chlorophyll, enzymes, water and fresh air, may these be from natural unpreserved suppliments no in tablet form. let your food be your medicine and your medicine be your food!

My daughter struggled with fainting (neuro cardiogenic syncope) at the age of 15/16/17 (up to 4x a day). A paediatrician was useless for 2 years, but as soon as we requested a cardiac specialist (recommended by STARS) he advised drinking extra water (3 litres daily), higher salt intake and tilt training (where you practise standing for longer periods of time). In addition he put her on a low dose of midodrine. She now only faints once every few months (when she gets over stressed) and her general health has improved dramatically. At 16 she had 55% school attendance but did amazingly well in gcses. She was kicked out of college for the next 2 years due to health and safety issues of fainting, plus low attendance. This year she is back and with excellent attendance, planning university for 2018. What a turnaround!

I just want to say, push to find the right specialist. My daughters cardiologist couldn't believe that we had been told by the gp to put up with it and she'd probably outgrow it by 25...

Good luck xx

cheryl55 profile image
cheryl55

one of my daughters started fainting when she hit puberty doctor said puberty was the cause . they stopped when she started periods.

Heartstop profile image
Heartstop

Don't give up, I don't know if you have gotten any answers for your daughter yet, but if you haven't you need to request her see a cardiologist and keep asking questions. You are her advocate and her voice. I went through the same thing for many years because of the Boston doctors did not believe the Chicago doctors on our diagnosis ( my twin sister) and our mother did nothing to protect us. We were diagnosed at 12 but not treated until we were 29. So keep asking and researching for her. Good luck

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