Discussions By Condition: I cannot get a diagnosis.

many questions/no answers

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: sportspookie23
  • February 3, 2008
  • 03:50 PM

My 2 and a half year old son has several issues which I have got very little answers on. He was born with a very large head later diagnosed Large brain, he has developmental delays, doesnt talk, walk, is fed through g-tube, was diagnosed with pseudotumor cerebri or false brain tumor about 2 months ago. He has had genetics tests and recieves physical therapy, occupational therapy, and has had alot of blood work. I cant help but think it is something that could be figured out it is just being overlooked or something. I want to help my little man have a happy life it would help though if I had some sort of knowing what is going on! PLEASE HELP, Any suggestions or thoughts are greatly appreciated! GOD BLESS!

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5 Replies:

  • If you are in the United States, you can receive free services, including speech, OT and preschool classes for free from birth to age 22...sorry, I cannot help with any medical advice.
    Monsterlove 2,921 Replies
    • February 3, 2008
    • 08:57 PM
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  • If you are in the United States, you can receive free services, including speech, OT and preschool classes for free from birth to age 22...sorry, I cannot help with any medical advice.Thanks for the info, We will check out our resources and yes we are in U.S. thanks again!
    sportspookie23 2 Replies
    • February 3, 2008
    • 11:49 PM
    • 0
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  • I'm glad I told you; I thought you were receiving services through them already. Just contact your local school district special education director (or administrator) and request services via the federal program "Child Find"..they should even come out to your house since he is not even 3 yet. You'll get speech and OT for now probably and maybe other services, depending on what the team decides.
    Monsterlove 2,921 Replies
    • February 4, 2008
    • 01:19 AM
    • 0
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  • My heart goes out to you. There is no pain deeper than not being able to help your child. I'm sorry I don't have the answer for you but I do have a bit of advice. No one loves your child as much as you do. No doctor, specialist or lab tech lays awake night after night worrying about him. You have the world at your fingertips through the internet. Use it. You are probably the only one who cares enough to search until you find the answer. As a nurse, I have seen soooo many patients (including myself) go YEARS without a diagnosis because, unfortunately, we are just another patient. You would like to believe that especially when a child is involved it would be a different story, but it's not. Type in every symptom he has into a search, find more forums and post, email people with questions...in other words...Don't give up. Many Many Blessings to you both, Katherine
    katclem 14 Replies
    • February 4, 2008
    • 04:31 AM
    • 0
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  • My heart goes out to you. There is no pain deeper than not being able to help your child. I'm sorry I don't have the answer for you but I do have a bit of advice. No one loves your child as much as you do. No doctor, specialist or lab tech lays awake night after night worrying about him. You have the world at your fingertips through the internet. Use it. You are probably the only one who cares enough to search until you find the answer. As a nurse, I have seen soooo many patients (including myself) go YEARS without a diagnosis because, unfortunately, we are just another patient. You would like to believe that especially when a child is involved it would be a different story, but it's not. Type in every symptom he has into a search, find more forums and post, email people with questions...in other words...Don't give up. Many Many Blessings to you both, KatherineThank you so much and you are right it seems like he is just another number! I do love him beyond words and know that he is a little blessing and no matter how frustrated I get the lord provides the strength and love i need to get through each day, It just breaks my heart to think he could be in alot of pain with this Pseudo tumor and he cant tell me how he feels and the docs act like i am too persistant or something. I guarantee i will keep searching and will not give up until I find the answer!! It is people like you with sweet words that make my day a little brighter!Thanks and I will post any new findings we go in two days to the neurologist again hopefully we will find out something!!
    sportspookie23 2 Replies
    • February 5, 2008
    • 04:55 PM
    • 0
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