Prayer request: My child suddenly lost sight in one eye, may lose the other

My husband (Patrickhenryinva) and I ask for you to pray for our dear child. He's 13.

He might have an unusually-presenting glaucoma. The alternatives are even worse. If it's LHNO, he could lose the other eye in similar fasion before Christmas. He might also have a brain tumor.

Glaucoma is suspected because His intraocular pressure is elevated, and he has optic nerve "cupping" that is typical of glaucoma.

He has completely lost the central visual field in his left eye, though the peripheral vision is completely intact. Usually, glaucoma knocks out the peripheral vision and spares the central vision. Visual losses from glaucoma usually creep up on a person. His happened virtually overnight.

He came to me Thurday afternoon, inquiring about what the cloud that had descended over his left eye, obscuring his vision, might be.

Friday morning at the opthamologists, I realized he could see nothing. Refraction didn't help at all.

(TWo months previously he had a mostly perfect routine exam. His pressures had actually been borderline high but there was nothing else "wrong". Drops are not usually started with pressures like he had then, and I wasn't referred to an opthamologist, or given special advice.)

If it's LHON, which doesn't usually get higher pressures, but can have cupping and sudden onset and central field defects and pop up in kids his age, then if his case is typical he will lose his other eye in time for the new year, perhaps christmas.

The prospect of this is utterly terrifying and devastating. Some kids/adults only have the one eye affected, though. Sometimes their vision even comes back, sometimes completely!!!

He's going to see a glaucoma specialist thursday, with an MRI for the first part of next week to rule out tumors that can mimic glaucoma.

Prayer is so needed for my child. Please pray for him. There is hope. I'm praying alone right now.

The back-and-forth has me confused and baffled. Plus the doctors are getting annoyed with me for asking so many questions

Dreadful situation for you and Andy to be in, but not unusual. A good accurate diagnosis can be hard to come by. You MUST keep pushing those doctors, challenging them, asking question after question. In doing so, you're actually doing them a favor, making them think harder and sharper about Andy's situation.

I recently did some work on a book for clients, a physician and an attorney, who are writing about the difficulty of getting a good diagnosis in any field of medicine. They advise readers to keep pushing their doctors for all they're worth. Much work needs to be done in the field of diagnostics, including forming an international symptom-based database, still nonexistent.

The other thing they recommend to frustrated patients who cannot get a solid diagnosis is to keep detailed and accurate records of their daily state of health including such things one might not consider a symptom: sleep cycle changes, exposure to household or industrial chemicals or molds and spores......any change in routine, even exposure to even wildly improbable causes like high voltage power lines, foods eaten in case a pattern of allergy shows up, etc.

If Andy's vision is better some days than others, the cause may emerge in a seemingly unimportant detail.

A few things to consider, according to my authors:
*Numerous conditions look alike upon casual diagnosis. *You might not fit the profile of a typical patient with your condition. (FOR EXAMPLE, ACTRESS FRAN DRESCHER WENT TO EIGHT DOCTORS OVER SEVERAL YEARS before she was finally diagnosed with uterine cancer. She didn't fit the profile, so no doctor followed up on her presenting symptoms. ) *Your physician may not have the expertise to diagnose your condition. *Perhaps you forget to mention a symptom that would provide a significant clue to your doctor though you think it is inconsequential. *Sometimes medical tests are compromised by a variety of factors and yield erroneous results that mislead physicians. *You may have an iatrogenic condition caused by the testing or the therapy prescribed by your physician. (Is Andy on any drugs, even nonprescription?) *Microbes and viruses can mutate, causing new forms of disease. *Diseases caused by environmental conditions are not well understood. (Could Andy's vision problem be a secondary symptom of something else? Perhaps some notoriously difficult to diagnoise autoimmune problem?)

Is Andy's blindness like a big fog over his eye? If so, has anyone checked for Fuchs Corneal Dystrophy? Only one percent of the population has it, so opthos don't bother to test for it. I walked around almost blind for a year after a simple cataract surgery turned into a nightmare of fog, no vision. Had the ophtho measured for corneal dystrophy prior to surgery, he would have used a different technique and different kind of lubricating drops to prevent complications. But Noooooo. I had to have a corneal transplant by a famous big-city surgeon whom I wish I'd seen in the first place, and recover from that before my sight returned. In the meantime, I discovered that if I ate NO sugar today (anything containing flour), my vision would be better tomorrow. Others report that besides avoiding sugar, inclusion of goodly amounts of Omega 3 oils in diet can keep their Fuchs blur under control so they can see.

It's all so complex. But Sarah, your diligent research and willingness to continue on to as many doctors as necessary will ultimately get you that diagnosis and the correct treatment and cure.

In the meantime, I continue to pray for Andy and for you and your husband. Andy sounds like a strong, resilient, positive young man and you're certainly a smart, determined mother. Between the two of you, and with God's loving grace, I'm sure all will turn out fine.

Thanks for pinging me to this thread, r9.

Sarah, know that I'm praying for you, Andrew and the rest of your family.

There's another reason I was pinged to this thread besides being able to offer prayers, Sarah. Back in August 2001, I was diagnosed with a brain tumor and found myself forced upon the same road you now find yourself walking down. While no one is even remotely suggesting Andrew might have a BT, the thought r9 had is that I might be able to offer you some advice in regards to doctors and dealing with a serious medical problem. So, here it goes... :)

Based on your responses on this thread, you seem to be a doing an excellent job as Andrew's primary medical advocate. Since he is not yet old enough to act as his own advocate, it's extremely important that he has a parent that is able to act as one on his behalf. Kudos to you for stepping up to the plate, rather than collapsing into an emotional pile of goo :). You should be very proud of yourself.

You haven't mentioned where you live on this thread but based on the types of doctors you seem to have access to it sounds like a major city or one with a university hospital nearby. I urge you to seek out the experts--wherever they may be in this country--on your son's condition (whatever it is or whatever you think it may be at any given time) and get their opinion. If you don't know who the experts are, ask the doctors you're currently seeing. If they don't know, look for the information on the internet. As you probably already know, you have every right to ask every doctor your son has seen for a complete copy of his medical record (they may charge a small fee, though). Typically, there is no need for your son to physically be with the expert for this first time review. It is usually enough for you to send a copy of all of his medical records for an opinion. In many instances, the entire process can take less than 72 hours if both parties use overnight air.

Some advice for the doctor's visits...If you're not already doing so, I'd suggest taking a small tape recorder to the appointments with you to record the visit for review afterwards. I get the feeling you may already be doing this since your replies to this thread seem filled with information. Either that, or you know shorthand. :) If you're taking notes, you many not be paying as much attention as you'd like and the tape recorder might free up your mind to concentrate on what the doctor is saying and lead you into other questions. If the doctor objects to being recorded, find another doctor.

Since one never feels like they have enough time in a doctor's office, I got in the habit of making a list of questions beforehand and then prioritizing them. I knew in advance that I probably wasn't going to be able to ask all my questions so made sure I asked my most important ones first.

Regarding the MRI...I've had over a dozen MRIs. As an adult, I realize I have a huge advantage over a 13 year-old but I tend to fall asleep in the MRI machine. Anyway, there are many brain tumor survivors who have learned over the course of their illness to "interpret" their films. Personally, I've never bothered to peek at the films before looking at them with my neurosurgeon. During the past two years+, I've certainly learned how to "read them" with him and I would know on my own if any significant changes were to occur but I probably still wouldn't do a first time look without having someone knowledgeable standing behind me. I might mistake a grease smear for a new tumor. :)

Also, regarding the MRI written report from the radiologist...I've not heard of a preliminary reading? Is this something you can get "right after" the MRI is taken? I mean, within minutes? Either way, if push comes to shove I'm willing to bet they'll give you a copy of the radiology report before your doctor sees it. Remember, you have a right to see it and you paid for it. And once again, I've seen over a dozen of these and each one is written the same way. Medical CYA (Cover Your Ass). "This white thing here could be the remnants of an old brain tumor or it could be the beginning of a new brain tumor. Yadda, yadda, yadda." Personally, I'd recommend getting some experience under your belt before peeking at the written stuff. It "could" unintentionally frighten you if you're not careful.

Finally, some words of (hopefully) wisdom:

Remember, worry is only anxiety over something that may NEVER happen.

Do not believe everything a doctor tells you. There is a reason they call it a "practice." They are not gods. They do not know everything. They do not know the future.

Live everyday like it may be your last. Tomorrow you may get hit by a Mack truck.

Read The Median Isn't the Message for some thoughts on statistics.

I saw a study that said 67% of statistics are made up.

Absorb only the good things that you see, hear and read. Throw away everything else.

Joe (MCM)

Andy was seen by the day-call retina specialist on the wednesday before thanksgiving. He did not see the indications of maculopathy the neurologist noted, namely the macula looked elevated to him in places, and had an appearance differing from the macula in the affected eye.

The retina specialist thought Andy's macula looked normal.
He scheduled an OCT, a test that provides a detailed tomography of the area and which could reveal abnormalities not seen in a regular dilated pupil exam.

He wasn't able to get to the right building to do that test until Wednesday - obviously he felt it could wait.

I called the office of the doctor who referred Andy to the neurologist this morning, the monday after thanksgiving, and
the person who answered the phone was able to move that OCT up to this afternoon.

This might make the retina guy mad, or the other doctor uncomfy, but it's been three weeks since Andy lost his eyesight and I'm not willing to lose any more time.

If there is something going on with Andy's macula, this test should be revealing. I want it ruled in or out ASAP.

If the macula is normal, we are back where we started; Andy possibly has glaucoma that is or isn't related to his vision loss, and has an undetermined type of optic neuropathy.

I am very grateful for your prayers, and for your shared wisdom from your own journey through the medical system, and for the words of encouragement.

Actually, I am getting so anxious it is hard to breathe and eat. I can't collapse for my family's, especially Andy's sake. But life is on hold until I know what is going on.

Th delays, confusion about diagnosis, and little mistakes the doctors are making and the lack of complete information from these doctors is hard for me to deal with, espcially with the prospect of permanent blindness in one of both eyes hanging over us. I know they should do better, my son pays the price because they do not.

At the same time, they are trying to help, have busy lives, cares of their own, and set ways of doing things that a determined, inquisitive and pushy person can upset. I'm sure they aren't used to a parent who comes in asking about "telangectasia" and who knows that rhymes with "fantasia", or what to look for on the optic nerve head in order to rule certain disorders in or out. They clam up, in fact, and pretend I won't understand what they tell me.

I've also never wanted more in my life to be stinking rich, so I that insurance pressures never factored into any of the doctors decisions (don't order this expensive test, don't repeat ambiguous ones, etc). But I think the only way I can get around this is to keep saying "tick tock, guys."

Depending on what his test shows today, and what I hear from the doctors today, we are going to go elsewhere for help, probably Johns Hopkins.

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