HELP!

[deb59]

My son is 20 years old and he was born with a chromosome abnormality called 18p. My son has just regressed so much over the years and I don't know where to go. He is constantly telling us that his brain hurts or my Heady hurts, he can't sleep and behaviors are just off the wall. It seems as though he gets into a confusional state! He can snap at of it for moments and say "oh I ok now" ? We know he has swelling of the lateral ventracles in his brain and he was born with a congenital cataract, the cateract was removed about 5 years ago. The vision seemed to improve but it has went downhill since. For some time now when we would go to touch or brush his hair he would wince in pain, so we run our fingers over the sides of his head and he would jerk in discomfort. Now he is poking himself in the eyes constantly, it seems though again he is in even more discomfort. I live outside of the philadelphia area and I wish I knew where to go where someone will look into his medical issues and PAIN! And not just send us to psychiatry! I have done that been there and nothing in that area helps! Any thought where I could go? Where do people care about people with special needs? Are they not human beings also? Do you know of compassionate doctors of neurology? We don't even know why he has the swelling of the lateral ventracles and the Childrens Hosptal we went to for years just wants to push him out because he is over 18 years old. I will not give up, I am his Mom and I KNOW SOMETHING IS WRONG AND I CAN"T FIND SOMEONE TO REALLY TRY TO HELP MY SON!!!! I am desperate! Thanks for any info at all.

[deb59]

Thank you for chatting with me!
Deb

[deb59]

I have not been to a neurologist outside of a childrens Hospital but I really need to because they at the Childrens Hospital just don't seem to want to even try to help us because of his age now. But yet when I try to talk to other Neurologist offices they keep insisting I go to a childrens hospital because of his genetic chromosome disorder! It is so frustrating! I am putting ice over his eyes and head to get him to sleep.........it seems to help some, i just wish I knew why! I am seeking a neurologist that will consider helping us! I am looking up the Kiari Malformation II, thanks for telling about that I think I may have heard of this one before, it may have been something that occurred on his chromosome deletion syndrome in some before. My insurance carrier is not of much help, but I am still talking with a nurse counsler that was asigned to my son.

[AngieG256]

Have you gone to your insurance carrier to try to look up any specialist in the area? I have done that. Also i find that reading online helps me a lot. There are web sites you can log onto and groups you can belong to pertaining to what ever sickness you/your son has to help you find specialists. Also I go to the University Of Colorado I find that the Dr's at University's actually stay quite up to date about practices and procedures and new medicins because they are professors and teach students. You can get more from your Dr. this way. Also they are more professional and dont just blow you off. Also i find they dont push you out of there offices the way normal Dr. somtimes do because they are learning from you and most of the time they have a student in the room with them teaching while they are talking with you. So the more complex the better for the student (sad but true).

I hope i have been of help!

You can also save you self time by just calling the university/ hospital you wish to be seen and see who specializes in that and they will tell you. Ask if they except new patients, and what insurance. Call your insurance and see if they are on the list on Dr you can see.

[AngieG256]

It is good to see Mothers like you who care so much about their children. Dont give up! I wish you the best. I hope some day your son will be o.k.

[AngieG256]

my sister in law had some of the same symptoms you are talking about and she had somthing called: Kiari Malformation II
It is where your brain is being pushed up against your skull and what they did is open your skull and place another piece in so your skull makes enough room for your brain. It steams from being born too soon at least that is what the Dr said. She was having so much pain she could not do anything. she was 18. It has been a year she was very suicidal because no Dr. would believe her. The Dr's all said she was just trying to get our attention and to just ignore her. Until somone took an MRI and saw that her brain was being pushed up against her skull. Her mother would not give up and decided to go with brain surgary and she is coming back to work and drive and normal. She is seeing a therapist but will not trust any Dr again.