My 3yrs old is not doing well
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Thread Starter
Join Date: Sep 2006
Location: Ontario, Canada
Posts: 348
My 3yrs old is not doing well
Hello everybody,
I haven't posted in awhile. My life has been upside down recently and I thought maybe it would do me good to share.
About 1 year ago, my son started tilting his head and looking downward. (like a librarian).. After trips to ER and docs we noticed that when he looked up to the left, his left eye would go up however his right eye would stay fixed. We were referred to an pediatric eye specialist. She diagnosed him with Brown's syndrome which is a form of strabismus (eye misalignment).
I then asked for an mri but she assured me that all was o.k. and the reason he was tilting his head was because he was adjusting the way he was looking (made sense)..
Fast foward a year. Specialist sees him a few weeks ago and says she notices his head is tilting more. Finally sends him for an mri. The mri was on a Saturday and I get a call on Tuesday saying he was fluid on his brain. We have since seen a neuro surgeon. He doesn't have fluid on his brain, he has a brain malformation which the bottom of his brain extends in his spinal cord causing crowding. There is also fluid that is starting to form beside his spinal cord.
He complains of headaches, cheek pain, eye pain, neck pain, numbness on his tongue face and legs etc... This is breaking my heart. I have never hurt so badly and wished I was going through this and not him. I feel so helpless. I am almost scared to wake up some mornings for fear of his new symptoms.
There is also a part of me that feels guilty because before seeing the eye specialist for the first time, I had researched the eye misalignment and told her about brown syndrome. Maybe if I would of kept my mouth shut she would have not diagnosed him with brown syndrome and had more tests done.
He now needs more tests to make sure there is nothing else going on and then he will be scheduled for surgery.
I tell you, I have thought of drinking myself silly on many occasions. I remind myself that I won't be helping him at all if I do so and my anxiety levels would hit the roof.
Please pray for my little guy and thanks for reading.
Joanne
I haven't posted in awhile. My life has been upside down recently and I thought maybe it would do me good to share.
About 1 year ago, my son started tilting his head and looking downward. (like a librarian).. After trips to ER and docs we noticed that when he looked up to the left, his left eye would go up however his right eye would stay fixed. We were referred to an pediatric eye specialist. She diagnosed him with Brown's syndrome which is a form of strabismus (eye misalignment).
I then asked for an mri but she assured me that all was o.k. and the reason he was tilting his head was because he was adjusting the way he was looking (made sense)..
Fast foward a year. Specialist sees him a few weeks ago and says she notices his head is tilting more. Finally sends him for an mri. The mri was on a Saturday and I get a call on Tuesday saying he was fluid on his brain. We have since seen a neuro surgeon. He doesn't have fluid on his brain, he has a brain malformation which the bottom of his brain extends in his spinal cord causing crowding. There is also fluid that is starting to form beside his spinal cord.
He complains of headaches, cheek pain, eye pain, neck pain, numbness on his tongue face and legs etc... This is breaking my heart. I have never hurt so badly and wished I was going through this and not him. I feel so helpless. I am almost scared to wake up some mornings for fear of his new symptoms.
There is also a part of me that feels guilty because before seeing the eye specialist for the first time, I had researched the eye misalignment and told her about brown syndrome. Maybe if I would of kept my mouth shut she would have not diagnosed him with brown syndrome and had more tests done.
He now needs more tests to make sure there is nothing else going on and then he will be scheduled for surgery.
I tell you, I have thought of drinking myself silly on many occasions. I remind myself that I won't be helping him at all if I do so and my anxiety levels would hit the roof.
Please pray for my little guy and thanks for reading.
Joanne
Don't get undies in a bunch
Join Date: Apr 2004
Location: South Shore MA
Posts: 7,120
Joanne
Do not be blaming yourself for even one moment. A trained Dr did a check up and the fact that the Dr is trained has never had anything I say I think it is change my own Dr's opinion.
Prayers for your little guy are on the way and an added prayer for you to find peace in this situation as well.
Do not be blaming yourself for even one moment. A trained Dr did a check up and the fact that the Dr is trained has never had anything I say I think it is change my own Dr's opinion.
Prayers for your little guy are on the way and an added prayer for you to find peace in this situation as well.
On a tear
Join Date: Jul 2003
Location: Volcano Country!
Posts: 3,221
You didn't cause this, hon... please try to get some peace around that part.
This is a terrible, difficult thing for a mom to walk through. You are doing exactly what you need to do today... and folks in this place can walk with you.
I don't know if you are working a face to face program, but if you are, this is a great time to reach out to your program friends and let them help carry you through.
Please add my prayers for a quick and complete healing for your beautiful babe. (((...)))
This is a terrible, difficult thing for a mom to walk through. You are doing exactly what you need to do today... and folks in this place can walk with you.
I don't know if you are working a face to face program, but if you are, this is a great time to reach out to your program friends and let them help carry you through.
Please add my prayers for a quick and complete healing for your beautiful babe. (((...)))
Member
Join Date: Dec 2006
Location: Texas
Posts: 76
Well, I admire you. You are obviously in what I refer to as, "The Jesus Category." Allow me to elaborate. Jesus knew what he had to do; not a job every dude would sign up for, but He did. Groovy. I wouldn't have. I would have been mumbling the whole way, "world full of ingrates, sick perverts, and I have to die for all this mess?" Meanwhile, God said to his board of directors, "Look ya'll, we have some hard stuff we have to conquer in order to reach this end goal I have in mind. Folks are going to get mad and call us names and it's gonna get UGLY. Who's in? These directors got together and had a meeting. They voted you ONE TOUGH GAL WHO CAN GET THE JOB DONE. Congratulations! You are in "The Jesus Category."
Member
Join Date: Dec 2003
Posts: 12,136
Joanne,
I'm so sorry for your little one's pain, and for yours. I hope that the surgery is able to give him some relief. Please don't blame yourself, I would have done exactly the same in your situation i.e. research the symptoms.
Please keep in touch and let us know how things are going.
Rowan xoxo
I'm so sorry for your little one's pain, and for yours. I hope that the surgery is able to give him some relief. Please don't blame yourself, I would have done exactly the same in your situation i.e. research the symptoms.
Please keep in touch and let us know how things are going.
Rowan xoxo
Old & Sober Member of AA
Join Date: Nov 2005
Location: Nursing Home in Brick, New Jersey
Posts: 5,174
I tell you, I have thought of drinking myself silly on many occasions. I remind myself that I won't be helping him at all if I do so and my anxiety levels would hit the roof.
Please pray for my little guy and thanks for reading.
Please pray for my little guy and thanks for reading.
I'm sure you're saying the Serenity Prayer constantly these days. Please accept my prayers added to those above (and to follow).
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