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Hydrocephalus, Macrocephaly

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Jessical

August 5th, 2008

My son was diagnosed with Hydrocephalus,Macrocephaly and a ventricle disorder I can never say or spell. He had a vp shunt placed back in March and was learning at a steady pace. My concern is with his upper body. At times when you are holding him his hands are just limp and hang there and he still has poor head control. He will be 1 on the 16th of Aug. and can roll from his stomach to back and back to his side but can't get over his shoulder. He cannot sit up un supported. We were told that there is a possibility that they may have waited to long to do the surgery and the pressure from the csf caused damage. I just want to know if we are getting to a place where we can tell yet. I am not getting answers from any one or if I do they are the same one over and over. Can you help?

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mominashoe

replied August 21st, 2008

Community Volunteer

It does sound like he did have some damage that was caused by a surgery made too late. It is just at times or does he always exhibit signs that he cannot move those limp parts? Do you think that maybe it is because he wears out quickly?

His equilibrium is most likely upset since he had this problem. With the absence of the fluid, maybe it will take him time to adjust.

I think also that since he has been through quite a trauma, you might want to give him time for his brain to recuperate and adjust to being normal. His brain will continue to grow, so it is possible that with a lot of work you can train him to use other parts of his brain for the possibly damaged ones for his mobility.

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Jessical

replied August 21st, 2008

Thank you for replying. Since I posted this he has made huge strides. His habd eye coordination is improving everyday. He is showing signs of the brain starting to make those little signals needed to get those parts moving!

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mominashoe

replied August 21st, 2008

Community Volunteer

That's great! I'm so happy to hear it! All my best to you and your little one Smile

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aki1

replied March 19th, 2012

Hi Jessica
I hope your son is doing great now.My sister has a twin and the little baby girl has Hydrocephalus.she will be 1 year old in a few days but she cant sit without help she cant have control on her head and my sister is depressed her head is too big Sad

and yes she has shunt in there
but i was wondering how your son is doing and any idea for my little niece thanks a lot

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	Tags: surgery, stomach, lupus, head, shoulder surgery, stomach damage

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