Hello,
I thought I would update you. I took Miranda to the specialest yesturday and they want us to patch her eye for the one eye going in. But when he looked in her eyes they found something Much worse.

He said it looked like Glaucoma in both eyes. He said that her optic nerve and something else was not right. I am sooo upset. He said that just by looking at the eyes (both) have it. But he wants to put her to sleep and check the pressure and check her eyes real good. So I am waiting for the doctor to call and let us know when we go for that.

He looked in my husbands eyes and he has the same thing but my daughters is worse then his. And he does not have Glaucoma. It is something else, but does not know the name of it. My husband also is color blind.He had 20/20 till he turned 43. My daughter is to young to tell us what she sees and all that so we have to wait till she is older to find that out I guess.

Does anyone know of any conditions that look like Glaucoma but are not, and run in families.

Thanks for reading
bye Chele'

I am sorry to hear the specialist visit wasn't straight forward for your daughter. I understand how you feel.

I am afraid I am not familiar with other conditions like glaucoma.

My son (5) has neurofibromatosis and he has lisch nodules in his eyes (freckling in the iris). Part of his condition can involve having a tumor on the optic nerve (which he does have, but in the chiasm, where the two optic nerves cross over). He doesn't have any eye symptoms from it. His vision is fine and his eyes look normal. If it progresses, a dullness may be seen on the optic nerve and his vision would be affected.

I'll keep you and Miranda in my thoughts, please let us know how she goes.

Sue


[This message has been edited by SueA (edited 06-06-2003).]

[This message has been edited by SueA (edited 06-06-2003).]

Thanks Sue for writing back.

Sorry to hear about your son and his eye problems. How did you find out about his eyes? What did they say will happen to your sons eyes? I will keep him in my prayers and your family.

Miranda goes on the 12th for her surgery, that is what they call it, to check her eyes and to see what is going on. They said she will be asleep for about 1/2 hour.

It just seems she has or gets the weirdest things. She has torticollis (but is much better now) and other things. Just seems like there is no end.

I have older children (18, 15, 12) and the baby. Never really had health problems with them. But this scares me with the baby. The unknown, ya know.

Well I took up enough of your time. Thanks for writing back.

Yes I will let you know what they find. and Please let me know how your son is.

God Bless Chele

I also have four children (all boys).

The brain tumor was the first thing diagnosed when he was three, then we found out about the neurofibromatosis. He had lost alot of weight over 6months and he had a large head circumference and his behavior was a bit off. If the glioma grows (there is a good chance it won't grow) it could eventually blind him. Because it is so far back on the optic nerve, I think there would be other issues that would arise before his eyesight is affected. He has a yearly eye exam with a paediatric opthamologist as well as regular MRIs.

Dan is doing well at the moment, in grade one at school and seems to be coping well.

Did the doctors explain why Miranda had torticollis?

Fear of the unknown, I know how that feels. I coped by learning everything I could about the condition, have a support group to lean on and a good team of doctors.

Finding information can be a scary thing, but I found it put me in a good position. I could understand what the doctors were talking about, I had more of an idea on what questions to ask and I can monitor my son's progress.

I must admit I was a mess when he was first diagnosed. It took me at least 3months to snap out of it.

Sue

Hello Sue,

Boy oh boy, you have your hands full too. http://www.healthboards.com/ubb/smile.gif I love children, I would have had another one but I had a complete hyst this past Aug. So no more for me. http://www.healthboards.com/ubb/frown.gif

But anyway, Miranda has a big head to. I could not have her natural because of her big head. But big heads run in my husbands family. As far as her tort, I noticed something wrong when she was only a month old and I searched on line and found out what it was. When I took her to the doctors they said I was right. She finished with her physical therepy and is doing much better. Cant see it only when she is sleepy or on that order. The doctor said she got it from her big head laying in the wrong way in my belly. (who knows for sure)

I noticed her eyes that there was somehing wrong about a few months ago. But her new doctor could not see it at all. So she sent us to the Childrens Eye care center. The doctor there was really good. Seen what I was talking about right away. Then he noticed that it looked like she has glaucoma in both eyes real bad. (scared me) BUt he looked in my dh eyes and his was close to looking like her's. So he said just to make sure he wanted to look at her eyes good while she would be put to sleep. So we go this coming Thursday. Hopefully he will tell us something soon. (Oh he said that it was her optic nerve and I think it is called the cupping affe? I am not real sure ) He said it was large and not in the right place.

I like you also search the internet to find and read what I can about things. So I know what the doc is saying and so I am not suprised.

It is nice talking to you. Its nice to have someone to talk to about this. My dh said I am worrying for nothing, because his eyes have always been like that. But she is my baby and my last one and I have a right to be worryied. I pray nothing is wrong but if there is at least I am well informed.

Well I chatted your eyes off enough. Thanks for writing.

I am glad that Dan is doing well in school. Does he wear glasses? Did they see his tumor from just looking in his eyes or from the MRI? Is there anything they can do? Or are they just going to leave it alone? I am sorry that you and your family, Most of all your dear Dan has to go through this.

Well I guess I will go, Take care, bye
Chele'

chele, it is very scary to have an ill child and to send a child off to surgery. My 3 year had a mediport placed (permanant iv site) and when they took her to the operating room, my heart broke. Good luck with the surgery
Bree

Thanks Bree for writing.

I am worried, but my faith will bring me through. And I am blessed that it is nothing worse. But when it is your child it is bad. Its nice to have a place to talk to other people.

I hope your child is fine now.
Thanks again.
Chele'

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