Jean in Newcastle Posted September 6, 2012 Share Posted September 6, 2012 (edited) The retinal specialist just called. There was stuff that he did not want to say in front of my daughter. He is strongly urging us to get her checked out because this condition in her eye can be indicative of similar tumors in the brain and that can be a problem. We have a couple of different ways to address this in terms of which medical professionals to consult and are trying to sort that out now. Dd10 does have migraines on occasion and this is cause of some of his alarm. As I said in my other post, the tumor in her eye is not a problem in and of itself. It's the possible corresponding issues - if she even has them - that would be the problem. Edited September 6, 2012 by Jean in Newcastle Quote Link to comment Share on other sites More sharing options...
JudoMom Posted September 6, 2012 Share Posted September 6, 2012 Praying, Jean :grouphug::grouphug::grouphug:. Quote Link to comment Share on other sites More sharing options...
amyable Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug: Many prayers coming your way! Hope it turns out to be nothing. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted September 6, 2012 Share Posted September 6, 2012 What a poor way to handle this. I would seek out another specialist for a 2nd opinion. Don't freak out as it could be still nothing. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted September 6, 2012 Share Posted September 6, 2012 (((Jean))) :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
GWOB Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Melinda in VT Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: Oldest DS had to have an MRI at about that age, because his optic nerve looked swollen, which can be a sign of brain tumors. His scan was fine and he apparently just has "funny looking" optic nerves. Sending you best wishes for a similar outcome. Quote Link to comment Share on other sites More sharing options...
Truscifi Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug: I hope you are able to get answers quickly! Quote Link to comment Share on other sites More sharing options...
sparrow Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 6, 2012 Author Share Posted September 6, 2012 What a poor way to handle this. I would seek out another specialist for a 2nd opinion. Don't freak out as it could be still nothing. I thought he handled it very well, actually. There is no question of his diagnosis of her eye. He asked for a second opinion on the spot when we were in the office since this is such a rare condition. He did extra research last night on the condition. His call this morning was partly due to that extra research but also because he did not want to upset a 10 year old child. I'm freaked out internally but it is more in a "how can we handle our end correctly" sort of way. I'm hoping that it will turn out to be nothing but we can't know one way or another until we get advice from a neurologist of some sort. Quote Link to comment Share on other sites More sharing options...
Susan C. Posted September 6, 2012 Share Posted September 6, 2012 (edited) Find a top neuro/retinal ophthalmologist! Both specialties, one doctor. I found one for dd (turned out fine)! Our's has authored textbooks. For me, it took someone that knowledgeable to trust what he said. Adding: I just read your update, sounds like you have this. Glad it is fine! Edited September 6, 2012 by Susan C. Quote Link to comment Share on other sites More sharing options...
Cricket Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: I hope you get more answers soon Quote Link to comment Share on other sites More sharing options...
Unicorn. Posted September 6, 2012 Share Posted September 6, 2012 I think he handled well too. I'm impressed that he actually took the time to research further, and that he took your dd's feelings into consideration. I will never forgive the surgeon who told my mom that he wouldn't operate to remove another tumor, and that "this one is going to kill you". Yep, to her face, in those exact words! :grouphug::grouphug::grouphug: I'm glad he's on top of things, Jean. Praying for your dd. And you. Quote Link to comment Share on other sites More sharing options...
besroma Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Impish Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
bzymom Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: I will keep your little one in my prayers. It is great that your doctor paid close attention, was careful not to scare your daughter, and then followed up. Quote Link to comment Share on other sites More sharing options...
Ibbygirl Posted September 6, 2012 Share Posted September 6, 2012 The retinal specialist just called. There was stuff that he did not want to say in front of my daughter. He is strongly urging us to get her checked out because this condition in her eye can be indicative of similar tumors in the brain and that can be a problem. We have a couple of different ways to address this in terms of which medical professionals to consult and are trying to sort that out now. Dd10 does have migraines on occasion and this is cause of some of his alarm. As I said in my other post, the tumor in her eye is not a problem in and of itself. It's the possible corresponding issues - if she even has them - that would be the problem. Oh no! Praying you get a good report from the neurologist. :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Desert Rat Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug: Praying, Jean. I didn't have eye problems as a kid, but I've had migraines as long as I can remember. My mom said I complained of them as early as 2. By 10, I was in the ER getting pain killers a couple times a week. They thought I had a brain tumor. The EEG came back abnormal. Luckily, I was having a migraine when I had the CAT scan and they could actually see it and no tumors. I didn't know the entire story until I was much older. All this to say, it might just be migraines. I hope it's just migraines. Quote Link to comment Share on other sites More sharing options...
Mommyof4ks Posted September 6, 2012 Share Posted September 6, 2012 What a great doc! Someone who is willing to research further, admit it is beyond his expertise, and spared your dd from worry while everything is sorted out, wow. Praying for peace as you seek answers. It is a scary road for sure. Quote Link to comment Share on other sites More sharing options...
QueenCat Posted September 6, 2012 Share Posted September 6, 2012 :grouphug:Jean:grouphug:, I'm so glad the doctor was so sensitive to your daughter by not bringing it up in front of her. You are lucky to have someone go the extra mile. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted September 6, 2012 Share Posted September 6, 2012 How scary! I hope and pray it turns out to be nothing. Dd's pineal cyst causes migraines. I would imaginr your dd's condition can, too?:grouphug::grouphug::grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: How scary! Quote Link to comment Share on other sites More sharing options...
Perry Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: Sounds like your dd is in good hands. What a poor way to handle this. I would seek out another specialist for a 2nd opinion. Don't freak out as it could be still nothing. :confused: What do you think he should have done differently? Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted September 6, 2012 Share Posted September 6, 2012 (edited) What a poor way to handle this. I would seek out another specialist for a 2nd opinion. Don't freak out as it could be still nothing. :iagree: I would be angry that the Dr. handled it this way. Why didn't he just ask your dd to step into the lobby, or have her stay in the room with a nurse while he took you to his office? But to get your hopes up and then drop this bomb on you?! She is 10 and she will realize that there may be something else going on when she has to see different doctors. She's not stupid. He could have also explained things in a calm way like, "Well, I'm pretty sure it's nothing but we always like to double check. So I'm going to have you visit some doctor friends of mine so they can have a look." Edited September 6, 2012 by Kleine Hexe Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted September 6, 2012 Share Posted September 6, 2012 :iagree: I would be angry that the Dr. handled it this way. Why didn't he just ask your dd to step into the lobby, or have her stay in the room with a nurse while he took you to his office? But to get your hopes up and then drop this bomb on you?! Thank you. We have so many specialists and every single one of them would have done this. Quote Link to comment Share on other sites More sharing options...
rieshy Posted September 6, 2012 Share Posted September 6, 2012 As a mom of children with rare conditions I send you a hug! I know how hard it is not to freak out. Personally I enjoy crying/praying in the shower. Then with a hot cup of coffee I can be calm in front of the kiddos:) I hope the waiting is short and the news is good! Quote Link to comment Share on other sites More sharing options...
Tap Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
EKS Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
sandst Posted September 6, 2012 Share Posted September 6, 2012 :grouphug:Praying for you and for your family... Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 6, 2012 Author Share Posted September 6, 2012 :iagree: I would be angry that the Dr. handled it this way. Why didn't he just ask your dd to step into the lobby, or have her stay in the room with a nurse while he took you to his office? But to get your hopes up and then drop this bomb on you?! She is 10 and she will realize that there may be something else going on when she has to see different doctors. She's not stupid. He could have also explained things in a calm way like, "Well, I'm pretty sure it's nothing but we always like to double check. So I'm going to have you visit some doctor friends of mine so they can have a look." Some of his concern was after he did additional research at night. He did not have that information when I was in the doctor's office. He did allude to the possibility of there being a connection. So it was not a total bomb-shell to me in that sense. But he could not tell me that there was a definite connection in some cases until he did his research. Actually, even in the update thread yesterday I mentioned that we did need to follow up to make sure there was nothing else going on. But I"m not sure why I'm arguing about this. I guess I was so impressed with this doctor that I don't want him to be put down in any way! And no, dd is not stupid. She cried this morning when I explained that we will have to see another doctor for some more tests. But words like brain tumor and aneurysm can be freaky to hear at any age. I'd rather her not have to think too much about the possibility until we even see if there is something there. My freak out has gone away in the midst of busyness. Her pediatrician is on sabbatical and I'm trying to find alternate ways to get a good referral to a pediatric neurologist. Quote Link to comment Share on other sites More sharing options...
RainbowSprinkles Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
sbgrace Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: I hope the wait for neurology isn't long and you get a good report there. :grouphug: Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 6, 2012 Share Posted September 6, 2012 When we went through a similar experience, and something showed up in the scans, we sent copies of the mri out for review by other ped neuros at the big ped brain tumor hospitals. Most will review for free. Huge hugs----feel free to pm me. Quote Link to comment Share on other sites More sharing options...
Heatherwith4 Posted September 6, 2012 Share Posted September 6, 2012 Praying :grouphug: Quote Link to comment Share on other sites More sharing options...
TheCoffeeChick Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
5LittleMonkeys Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: for both of you Jean. I hope you get answers quickly. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted September 6, 2012 Share Posted September 6, 2012 Sending prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
Jen in PA Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
Luckymama Posted September 6, 2012 Share Posted September 6, 2012 Can the ped's office get you a referral to a neurologist without waiting to see him/her? When dd17 needed to see a ped neuro because of unusual headaches, our family doctor's office called a well-regarded neuro's office and got her in right away. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 6, 2012 Author Share Posted September 6, 2012 Can the ped's office get you a referral to a neurologist without waiting to see him/her? When dd17 needed to see a ped neuro because of unusual headaches, our family doctor's office called a well-regarded neuro's office and got her in right away. I am getting nowhere with the pediatrician's office.:glare: Our pediatrician is on sabbatical and no one else wants to step in to help out. I am instead dealing directly now with Children's Hospital Neurology department and the retinal specialist. They are both being extremely helpful. Quote Link to comment Share on other sites More sharing options...
Sun Posted September 6, 2012 Share Posted September 6, 2012 I am instead dealing directly now with Children's Hospital Neurology department and the retinal specialist. They are both being extremely helpful. That's what I was going to suggest. I'm glad they're being helpful. Quote Link to comment Share on other sites More sharing options...
elfgivas Posted September 6, 2012 Share Posted September 6, 2012 I am instead dealing directly now with Children's Hospital Neurology department and the retinal specialist. They are both being extremely helpful. this is a great route to try; good for you! re differing opinions on how your doctor handled it all: different folks work different ways, and want information in certain ways. he had met you, made an assessment, and followed thru in a way which seems to have worked well for you. it would have worked well for me, too. i would never leave a 10 year old on their own to get feedback without them. (none of my 4 at age 10 would have stood for it, either ;)). and i love that he went the extra mile to make sure something didn't slip thru the cracks! hope there is a clear and quick path forward, ann Quote Link to comment Share on other sites More sharing options...
justamouse Posted September 6, 2012 Share Posted September 6, 2012 Praying!! Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted September 6, 2012 Share Posted September 6, 2012 I'm impressed both you and your DD's doctor, Jean. Many prayers for your DD! And lots of hugs, too: :grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
chickenpatty Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
LostSurprise Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: I'm glad you're going to a specialist (and a specialty hospital). I love our pediatric neurologist, but there are some times you need more. This is one of those times. Quote Link to comment Share on other sites More sharing options...
Sparkle Posted September 6, 2012 Share Posted September 6, 2012 Praying. Quote Link to comment Share on other sites More sharing options...
fraidycat Posted September 6, 2012 Share Posted September 6, 2012 :grouphug::grouphug: I think it's great that the doc did further research for you. Many would not. I hope everything turns out fine. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted September 6, 2012 Share Posted September 6, 2012 :grouphug: Quote Link to comment Share on other sites More sharing options...
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