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early indicators of optic glioma?

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early indicators of optic glioma?

Postby anxious jen » Wed Apr 12, 2006 3:20 pm

Hi all, I've just read a very long thread on optic gliomas and know I'm asking the right group this question...

What are the early signs of optic glioma?

My 2 1/2 year old, not diagnosed with NF 1, but I fear it (CALS, large head) has been covering his left eye, squinting, rubbing and tearing. I plan to call my ped tomorrow for a referral to a pediatric opthalmologist (my older son already goes to one for other problems). But, did you all discover them just with routine checks? Obviously a two year old can't complain about or even comprehend vision loss, but did any of your children have other EARLY signs like these before gliomas were detected?

Thanks for your input in advance
anxious jen
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early indicators of optic glioma?

Postby Jaxmom » Wed Apr 12, 2006 3:36 pm

I understand your fear. Realize that optic gliomas only happen in 15% of NF cases, and the moms you see posting here are those whose children have more severe cases than most. If our children were the half who are barely affected, we would be spending this time at the beauty parlor, playground, PTA, or mall, rather than glued to the computer. It's wise to have concerns evaluated. It's much better than losing sleep indefinately, but the odds are in your child's favor. And, half of the gliomas don't grow, so having one doesn't necessarily mean that a child needs chemo.

Although our children are the "worse case scenerio" they are happy, gorgeous, vibrant children. I thought that the NF diagnosis would be the end of the world, and it wasn't. I thought a tumor would be the end of the world, and it wasn't. I thought that having it grow would be the end of the world, and it wasn't. Now, personally, I hope to end our bad news now and not go any deeper into it, but even then, it won't be the end of the world. Most of our kids are a little quirky and enjoy their trips to the doctor. Of course, we are sure to spoil them so the visits are something to look forward to.

We had no indication that Jaxon had a glioma - and his was about the size of a quarter when it was found. We had an MRI to serve as a baseline "just in case" something happened in the future. Except, it revealed that Jaxon already had one. He was three.

Keep in touch if you need to. This is a great resource but can be addicting. Remember to play too. Let us know how your story turns out. We love good news!

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early indicators of optic glioma?

Postby AJ » Wed Apr 12, 2006 3:49 pm

Hello. My daughter, Jenna (now 4), just finished treatment (chemo) for bilateral optic nerve gliomas. We found them at a routine eye exam. I would suggest eye exams every 6 months regardless of eye problems. We've been taking Jenna since she was 4 months old. At 20 months, the opthalmologist dilated her pupils and noted swelling and pallor on the optic nerve. That's how her tumors were diagnosed. She was able to take the vision test by age 2, so we started to get a good idea of her vision after that. A trip to the opthalmologist is always a great idea (said from an unbiased mom). LOL.
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early indicators of optic glioma?

Postby CarterBaby » Wed Apr 12, 2006 4:32 pm

I agree wholeheartedly with Jaxmom - better to get things checked out if you have a concern than to worry about it and do anything.

My son has optic gliomas on both nerves and back past the chiasm. His Neurologist noticed involuntary eye movements, which is what prompted him to investigate. The movements were like a shifting of the eyeball when he would focus on something. He also when reaching for a toy in your hand would reach past the object as if his depth perception was off. Also, when I would stand up in the kitchen and he would be playing in the play room (about 5 feet away) I would call him and he would look towards my voice but could never find me and focus on me. He should have been able to see me plainly. Another thing that is kind of weird and medically can't be figured out, but it is a known occurance is that people with brain tumors can have itchy noses. Carter has rubbed his nose for as long as I can remember. Of course until our oncologist told us about this we just thought it was some kind of tic.

Anyway, knowledge is power. I have learned so many things from coming to this BB in the past month, since Carter's diagnosis. It's always a better doctors appointment when you go in knowing what questions to ask and you've been able to keep an eye out for certain behaviors that might help the doctors.

Best wishes to you and your little one. I hope all goes well. Please keep us updated!

We will be praying for you.

<small>[ April 12, 2006, 08:34 PM: Message edited by: CarterBaby ]</small>
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early indicators of optic glioma?

Postby anxious jen » Wed Apr 12, 2006 5:00 pm

Thank you so much for your information and support, Jaxmom, AJ, and CarterBaby.

Just wondered if anyone else has heard of CarterBaby's "itchy nose thing" being related to NF or brain tumors. I'm like most of you probably (were, anyway), except since I'm still in the grey area, every little thing I see I wonder if it might be another indicator of NF.

My son is CONSTANTLY itching his nose! VIOLENTLY. I always assumed he had allergies like my older son. But he doesn't have any other real allergy symptoms.

I'll keep you posted about our opthalmologist visit. I don't necessarily want an answer to this constant question in my head, especially if it comes from the opthalmologist--so I'm hoping for more "nothing definites." We'll see...

Thanks for your concern.
anxious jen
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early indicators of optic glioma?

Postby Andrewsmom » Wed Apr 12, 2006 5:32 pm

Hi, We are in the stage that they have found the glioma and now we are seeking to know what to do about it. Our Opthamologist didn't find it. I questioned her when she put glasses on him and told us to start patching/! But she said no it's astigmatism. So, a MRI showed it for us. I've never noticed him itching his nose. He has severe nosebleeds?! Right now we are headed to Duke Uni. tomorrow to see a Neuro-Opthamologist. we were there Mon. with Neur-Onocologist and he wants another MRI and to see this specialists. We have to drive 3-4 hours, so this week has been wild. We want answers. He seems conservative and doesn't want to start treatment til he sees if it ahs grown ina month. Also, he says thsi Dr. tomorrow is the Best! So, we will see.

I agree with everyone else. Eye examines are important! We've been going since we suspected NF. He was 8 months old. I hope you get some answers soon! It is a scarry road to walk down, but as Jaxon's mom said Our kids are precious and special! Andrew loves going to the Dr. as long as they have TOYS! Good Luck! Kay
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early indicators of optic glioma?

Postby dyl145pickle » Fri Apr 14, 2006 4:44 am

I'm new here-my son has NF and so does my wife. He has a glioma found when he was 3. The doctors notice his eye portruding and that is when they decided to do the MRI. It is also a chaism. He is 8 now and its has not changed much. Just had his eye exam at the Mayo. His vision is around 20/60?. They decided this past year not to do the MRI for the glioma and just moniter it with the eye exam. Unfortunately because his scoliosis asscitated with the nf had gotten worse he is getting an MRI this morning. I need to ask more questions. The doctors don't seem to give much information as to options and what to expect next-I hope this site will help.
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