March 10, 2013 at 6:28 pm #415rbs1999Participant
A friend suggested that I post here to see if any of you have any ideas about what could be going on with my daughter’s vision.
My children and I have all been diagnosed with MCAS within the past year. (My husband may have it as well, and we suspect many other members of our families may be affected too.) My 6 year-old daughter has MCAS, reflux, and a couple of IgE-mediated food allergies.
Recently, she has been reporting odd visual issues. She started telling us about them a few weeks ago. We have been to a pediatric opthamologist and a neuro-opthamologist so far. Both doctors have dilated her eyes and performed various exams and pronounced her eyes normal. The pediatric opthamologist said that she could be having “ocular migraines.” (Migraines do “run in our family”–both my husband and I experience them periodically, as well as other family members.) The neuro-opthamologist said that there are no tests that he can think of that will give us an answer as to what is causing her symptoms–he suspects they have their origin elsewhere than the eyes. Our allergist believes that these visual phenomena may be related to mast cell activity–perhaps causing transient interruptions in blood flow. (My daughter’s blood pressure is also normal.) She has also been evaluated by a pediatric cardiologist recently (for dizziness) and her exam, EKG, and echocardiogram were all normal.
The visual symptoms my daughter is complaining about are: (1) seeing colored dots floating around–pink, purple, blue, sometimes other colors–she says this has been happening for a long time, as long as she can remember, although she only told us about it a couple of weeks ago; (2) blurry vision one day two weeks ago, including seeing straight lines as wavy (this has happened only once that I know of and coincided with a temporary increase in one of her antihistamines–Chlorpheniramine); and (3) momentarily seeing objects/people as “all white”–she says that she cannot see them, they are “all white”–last night this happened a few seconds after she said one of her legs felt funny, then she could not see anything but white, and then a few moments later everything was back to normal.
She has reported that her head hurts a couple of times in the past few weeks, but not in close connection to the visual complaints. Her head complaints are consistent with seasonal allergy symptoms–she will point to her forehead as the location of the discomfort. Her vision complaints began around the same time pollen counts started to rise in our area.
We are now trying to decide whether to have a MRI done. My husband had a benign brain tumor many years ago and his only symptom was visual disturbance (although different from what our daughter is describing). As far as the MRI, I know that the contrast may pose an allergy risk. And my husband reacts badly to MRI contrast. I know we could pre-medicate our daughter prior to the test according to her emergency plan (with steroid and extra antihistamines) and hopefully that would help reduce the risk from contrast. We definitely do not want to do an unnecessary test, especially one that carries some risks, even if they are low, especially if it will not tell us anything. (But could set our minds at ease that there is nothing wrong going on brain-wise.) But on the other hand, we are really stumped as to what is going on and none of the doctors have had a confident/definite diagnosis.
Has anyone else experienced symptoms like these? Did you have a MRI? Was it helpful? We plan to discuss this at greater length with our daughter’s physicians, but I wanted to see if there are any other patients with similar experiences out there.
Thank you so much.March 11, 2013 at 10:10 am #3547Dr. DianaKeymaster
Hi and welcome! This is so tough because obviously, no one can examine your daughter over the internet, and it would be easy to miss something terribly dreadful (like a brain tumor!). Having said that, and with all disclaimers in place, I will tell you that I have heard of those sorts of symptoms before. I am working on this now, and if you can fill out a Symptoms Checklist for your daughter and send it to me (please remind me that it is you!), it may give me some idea of whether she fits this theory (under Articles and Handouts on the website). You’ll see some funky visual symptoms, too. My work right now is fairly “cloak and dagger”, but I’ll get out the info ASAP, OK? As far as the MRI goes, that is tough (been there!). I know you will discuss your concerns with your doctor so they can help you decide if that is the best route, or if another form of imaging may get you the info you need, sans contrast. How old is your daughter, BTW? Hang in, my friend. My kids and I are with you on this journey. 😉
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