? on Fluid on the Brain

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? on Fluid on the Brain

Postby tkmeawynow » Mon Jan 26, 2009 11:16 am

I am looking for anyone with personal experience on this, my sisters baby is 6 months and basically does nothing he still cannot hold his head up doesnt roll and worse he does not put preasure on his legs. she was told at his 6 month check his head is in the 99% and his body in 75% so they are sending him for a ct. We have been worried from about 2 months something is wrong but they never seemede to see it I guess. I am just wondering if all this can be connecte3d can it cause delays and stuff.
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Postby curteisye » Mon Jan 26, 2009 11:29 am

I think what you are talking about is hydrocephalus - literally meaning "water on the brain". I am a neuro nurse and know quite a bit about it from an adult stand point, but not as much from a baby stand point. What I can tell you is that yes, it can absolutely cause delays and it can cause seizures and brain damage over time if not treated properly. The thing is, when babies are very small and their fontanels aren't closed, they have some room to compensate, but as they get older and those fontanels close, there is no where for that extra fluid to go. There are two reasons for hydrocephalus - either the body produces too much and cannot get rid of it or distribute it fast enough or there is a blockage that is preventing the fluid from draining properly. given the fact that your nephew is 6 months old and just getting protentially diagnosed with this, I would guess the form is due to the former and not the latter and that he doesn't have too bad of a case. If that is the only thing wrong, they can place a device called a shunt into the venticle in his brain and help drain the excess fluid into another area of his body like the peritineum (space in the abdomen where excess fluid absorbs into the bowel). there are a few other places too, but this is the most common. the good news is that many people who have this can lead a perfectly normal life. The bad news is that he will need to have surgery to have a new shunt placed every so many years as he will out grow them over time. With a mild case, he might even grow out of the problem all together as he gets older - it is not unheard of. It is amazing what a difference one of those shunts can make though. He may still have some delays, but usually not long after shunt placement there is a dramatic difference in the way a person will act. in the baby's case, he will probably suddenly be more active and involved with his environment. Anyway, I hth.
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Postby manynums » Fri Mar 06, 2009 11:18 am

Is sister in St Louis? Get the baby to Children's ASAP and see someone in Neuro. Sasha had hydrocephalus and has a shunt to keep her happy and healthy. We love Dr Leonard in Neurosurgery. He saved our Sasha.
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Postby LovesMyBoyz » Wed Mar 25, 2009 9:17 am

She needs to take the baby in and pressure them to run tests and maybe get an MRI.

My son has extra fluid in the center of his brain. From what I was told it is normal to have some, but he has extra. His head is a little larger. At one point it was causing pressure to be put on his optic nerves (what the neurologist and ophthalmologist told me) and he was legally blind for a bit. Now he sees decent most days, he has shifty eyes and sometimes has other problems. Yet he walks (took a little longer). His speech is delayed. He has speech and occupational therapy as well as seeing ken-o-sha

I know that my sons condition is not as severe as your nephews, but he NEEDS to be seen and a Dr. needs to be pushed to get him help. If her pedi will not then have her find another. I have had to do this. It is something that needs to be kept on top of to give him the best chance in life.

The health department in her state probably has some sort of program for kids with delays. Here it is called Early On or for the babies with more serious problems Ken-o-sha. Have her call them. Does she qualify for WIC? Have her talk to a person there, they are great about helping you find help. I personally think their nutrition services are worthless, but they have helped me when I needed to give my pedi a push.
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Postby tkmeawynow » Wed Mar 25, 2009 9:28 am

Thank you all for your replies, I dont think it is this but they are in complete denial, she has been told to get him in to see a neurologist and they dont want to. Everyone is trying to convince them but they just say nothing is wrong with him. He is 8 months and cant hold his head up if you pull him up by the hands, they just say he has a big head, he cant support himself, he doesnt put preasure on his legs and he cant jump in a jumper. there are other things too. I just feel for him I would hate for it to be something they could treat now and it will get worse if left of course we all hope it is nothing and he is just a little delayed but for godsake wouldnt you take him still for peace of mind
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Postby LovesMyBoyz » Wed Mar 25, 2009 10:32 am

This sounds mean and cold, but call CPS. I do not wish that agency in anyone's life, but the child needs help and the longer she waits the harder it will be. It is not fair to the child. How much of a delay does he need to have before she does something? Does he have to be hopelessly behind before she takes action?

True, being the mom of a special needs baby is not easy. I know I have it lucky compared to some. I just had my toddler diagnosed as failure to thrive because of his size and lack in speech. I have worked my butt off since he was born to get him all the help I can. I have fought Dr.'s and "stalked" other specialists to get him seen. It is not easy doing that when you are a high risk pregnancy. It is not easy having 2 little ones and being pregnant again. Still, I do it. Because it was my choice to be a mom and my choice to have the kids. Part of being a mom is doing right by your kids.

I am not yelling at you. I am sure it sounds like. I am not. I am just frustrated that that woman is not getting her son help. Especially when others are telling her to. This could have life long consequences for that little boy.

BTW, CPS will not tell her who called on her. Just call and tell them that there is a little boy in the house. The house is nice and what not, but the little boy needs to see a specialist and the mother is not taking him. They will make her take him. They will not take him away unless there is serious neglect. Sometimes people just need a push.
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Postby tkmeawynow » Wed Mar 25, 2009 10:48 am

I know, I just heard she made an appointment for the beginning of April so we shall see otherwise I will def do something. They have great ins so there isnt even a money issue.
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