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Hunter
(years diagnosed)
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her brother has one too.
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other people know it's not "all in your head" Please join me in keeping it
real.
I need any help you can give me to make sure that I know what I am talking about with the doctors.
Hunter has complained quite often about having headaches. He will get pale and want to just lay on the couch and watch cartoons.
Saturday afternoon we were out of town on vacation. He complained about a headache at about 3p.m. We then went to our room, took showers and went out to eat. We took Hunter to the sting ray reef at Kemah Boardwalk near Houston Texas. He loved petting the rays and didn't complain about anything. At about 9p.m. he started crying and hitting his left hand. He told me that it hurt and pointed to where the pain was. He was pale and didn't feel like eating much.
We left promptly and on the way to the room he dozed off in the back seat. After being asleep for about 10 to 15 minutes he sat straight up holding the front of his head screaming in pain. ( He has a high tolerance for pain.) He kept saying "it hurts" and rocking back and forth. I got him into the front with me and he kept looking right at me saying "I want my mommy, I want my mommy" ( I am his mommy) We finally found a hospital...he was still in extreme pain...could not walk, felt nauseated and had cold chills all over him. We had to hold him really still and finally he would calm down. If he moved at all it caused him to hurt again. They got him in immediately and did a CT scan. It showed a right-sided ambient cistern/medial temporal lobe 1.1 cm arachnoid cyst. That hospital then transfered him to Texas Childrens Hospital in Houston. At about 7 a.m. the neurologist came in to see him and by that time Hunter had been sleeping and feeling better. He said that it is probably just incidental that we found it. That we need to get an MRI done to follow up but that the cyst typically do not grow so we should not worry.
We are now trying to get an MRI scheduled where we are from but the doctor wants to see him in a couple of days before he will schedule one. He said that we may just want to treat the headaches that they probably do not have anything to do with the cyst. He has had pain in his left hand again and a mild headache. The nurse told me that the pain is probably due to pressure on the nerve from the cyst. Please give me some insight on what I need to tell the doctor. We have an HMO insurance and they do as little as possible.
I will have to push for what he needs.
Thank you so much for your website,
Julie
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