My daughter is 17 and a survivor of twin-twin transfusion syndrome, born at 27 weeks. She was the donor twin (her sister survived as well). She has had a healthy life after the initial start requiring over 4 months in NICU. Some learning disabilities, but a healthy, happy girl.
She began having rare seizures about 18 mos ago. She has had 8, and in 4 of them, she was wearing a seatbelt and it was tight across her neck. She would come right out of the seizure as soon as she was laid down and had complete memory up to the moment of seizure along with alertness and wakefulness afterward---not typical seizure response. She remained upright during one seizure and went blue, then gray. Only after I pulled her from the car and lay her on the ground did she start breathing again and the color returned to her face. She often reports headaches after seizures, but not always. She describes a dizzyness just before having the seizure and, we believe, has warded several off by lying down. If she lays on her stomach, with her head twisted to the side, the seizure seems to keep going longer than if she lies on her back or side.
Three weeks ago she had another (no seatbelt that time), and since then has has dizzyness and feeling faint very often when sitting or standing. When lying down, she is fine. We took her to ER two weeks ago and they did MRI, EEG, and Echocardiogram. All were basically normal. They wanted to do an MRA, but couldn't because she is wearing braces. They found that when she sat or stood, her blood pressure dropped and her heart rate went up so they treated her for dehydration and kept her overnight at the hospital. (after 3-4 bags of fluid IV's, she still had dizzyness and near fainting when leaving the hospital. A pediatric neurologist felt the issue was cardiovascular and assigned her a 30-day heart monitor that she wears and makes recordings whenever she feels dizzy. But she is spending 90 % of her day lying down.
Dear leishylou: We all have quite a bit of variability in our heart rates over a 24 hour period. When your heart rate occasionally increases to 98 beats per minute, that will feel “fast” to you, but it is not fast enough to suggest any arrhythmia of the heart beat. Usually, abnormal arrhythmias that occur at rest are associated with heart rates that are over 150-180 beats per minute. It is great that you have taken your pulse rate, as this is very helpful information for your doctor to have. It is also important to make sure that you are drinking sufficient fluids each day (32-48 ounces), or else your heart rate may increase.
As far as the brief, stabbing chest discomfort that you are experiencing, it is important to know several things: is it brought on by exercise or does it occurs at rest? Does it worsen with movement or taking deep breaths? Is it very brief or long lasting? Is there anything that you can do to make it better? How long has it been going on? Do you have asthma? Is there any history of heart problems in your family? Most chest pain in young people is NOT cardiac in origin; mostly it is either musculoskeletal or related to the lining of the chest and lungs. Occasionally it can be of gastro-intestinal origin, such as acid reflux.
Finally, if you are experiencing shortness of breath as well, or a change in your exercise ability, it is important to see your primary doctor soon, and review all these symptoms with him/her. They may want to get some testing, such as an EKG and chest x-ray. It is important to make sure that the corrected QT interval is normal in patient who pass out.
I have a daughter who also was a twin. At first it was thought she had twin-to-twin transfusion but later ruled it out. Her twin sister did not survive. During pregnancy we noticed that one twin had a much lower heart rate and was not growing at the same rate. She later died from what we now know was Long QT Syndrome, a genetic heart condition that affects the electrical part of the heart.
I don't know if this has any relevance to your daughter's situation but it is worth a try. My living daughter has been diagnosed with Long QT Syndrome as well as myself, my other two children and several other family members. It's only symptoms are usually fainting and seizure-like activity. My son has seizures when he faints, but these are like you describe in that he is very aware before and right after the seizure.
You could ask your pediatrician or family doctor to refer her to an Electrophysiologist (heart rhythm specialist) and ask specifically about the QT interval on the ECG.
Dear AnnePor: Sorry, there was an error in the initial posting. This is my response to your question. There are teenagers who experience what you describe in your daughter. These young people are relatively volume depleted and have an abnormal drop in blood pressure and increase in heart rate associated with positional changes. They feel dizzy and sometimes pass out. This condition goes by the names of orthostatic hypotension or postural orthostatic tachycardia syndrome (POTS). There are teens who experience dizziness and passing out in other situations as well: after standing or sitting for long periods of time, in hot, crowded places, or when feeling unwell or queasy. This goes by several names including vagally mediated or neurally mediated syncope, and neuro-cardiogenic syncope. In this condition, the vagus nerve (which slows down our heart rate) is overly active in response to certain physiologic situations; these patients experience both low heart rate and low blood pressure which results in symptoms of dizziness and passing out.
The most important part of the evaluation is a thorough history and physical examination. Additional work up includes an EKG and echocardiogram to make sure there are no other cardiac causes of low cardiac output. The family history is also extremely important. You do not mention if there is any history of family members with known cardiac problems, need for defibrillators, etc.
If the neurologist does not feel there is a primary seizure problem, then the first line of therapy is to increase both fluid intake (minimum 60 ounces per day of non-caffeinated beverages and water) as well as increased salt intake. Sports drinks are an excellent choice here. Additional treatment with medications that interfere with the neurologically mediated response may also be necessary. The fact that your daughter can sometimes abort these episodes by laying down is suggestive that this is the problem. Unfortunately, it sounds like she is quite debilitated at the present time. You can consult with a cardiologist regarding medical therapy if the fluid and salt supplementation is not helping within a week or so. I would also agree that an cranial MRA would be indicated at some point to evaluate her head and neck vessels, as one needs to be sure she has no abnormally narrowed vessels or a vascular arrangement that can lead to a “subclavian steal” situation, given the history or worsened symptoms with her head turned to one side, and with pressure from a seat belt.
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