Jump to content

Menu

OK - now I'm freaked out (dd10's eye)


Recommended Posts

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 by Jean in Newcastle
Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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 by Susan C.
Link to comment
Share on other sites

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.

Link to comment
Share on other sites

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:

Link to comment
Share on other sites

: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.

Link to comment
Share on other sites

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 by Kleine Hexe
Link to comment
Share on other sites

: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.

Link to comment
Share on other sites

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!

Link to comment
Share on other sites

: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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites

 

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

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...