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Need help with diagnosis

Wed, 10/31/2007 - 09:24
My son started having "blackouts' about a month and a half ago. I sort of ignored it at first because I thought it was something typical like getting up too fast. I told him to tell me each time it happened. Some days it would happen once or twice and some days five times. Almost always at the computer or in the car. Then it stopped. It started again about a week later. I have taken him to a Ped Neuro. He examined him, had him hyperventilate and then said he doesn't think it's seizures but he will do an EEG which we did the next day. It was with flashing lights and hyperventilation - toward the end he started getting tingling like he was going to have one and they stopped the test because he was agitated. Also, it was done by a trainee, the tech left the room, every time the line jumped she put movement whether he was moving or not. I don't know if that's significant. It came out normal. The doctor told me he didn't think it was seizures so I asked him what else it could be. He said he had no suggestions so I asked him if he thought my son was making it up. He said no but I suspect that's what he thinks. He kept laughing at me throughout the phone call. My son also has growth hormone deficiency from hypothalamic/pituitary origin so I asked him for an MRI to make sure he doesn't have a lesion or tumor. He said no. I called him back last week to let him know that my son has had more "blackouts" so he ordered a 4 hour ambulatory which I don't think will show anything because he almost always has them within an hour after waking and this would later in the day. I tried to get him to order a sleep deprived but he won't do it. He said if it was anything it would be absence seizures which is what my sister had so I think he is testing for that. My son says that he gets tingling in his arms and legs and his head feels really hot and then he "blacks out". From what I have observed, he will look off into space - he looks like he's about to say something but doesn't - he won't answer when I call him. Sometimes he smacks his lips or this morning he resumed eating his cereal but wouldn't answer to me. This morning he had two in a row. The first one no tingling and just a blank look - just before this he kept saying Mom, Mom, Mom over and over but wouldn't answer me. Then he said he had a "black out". Right after that he got the blank look again for a half minute or so and then started eating his cereal but wouldn't answer me. When I asked him if he was OK after a minute he was saying garbled stuff and then finally he said he had another one. This seems to me to match a complex partial seizure possibly rather than absence. Any thoughts or advice would be much appreciated. I'm new at this and don't really trust this doctor. If it doesn't sound like a seizure, please let me know that too or if you have any thoughts about what else it could be.

Comments

Re: Re: Re: So he has a growth hormone

Submitted by kgoodfl on Thu, 2007-11-01 - 15:12
If you are worried about it - you should push. There may be other tests for stroke though, maybe an internet search? Well he had his MRI today, his Ped Endo ordered it with and without contrast plus Pituitary. We'll see how that comes out. Poor guy - he is so tired of tests and this one was not fun at all.

Re: Need help with diagnosis

Submitted by kaitlynsmom on Wed, 2007-10-31 - 10:55
I am with Sunflowerpower... I think you need to call another neuro and tell them what's going on and tell them you want further testing done. Don't take no for an answer. You are your son's only advocate, so fight. When my daugther first started having seizures when I called the various doctors we had, they all said no to this or that and pushed me to the side. After awhile I started calling everyday until they listened to me and come to find out, she has constant seizure activity and is uncontrolled. Part of it, people may think I'm crazy... but I think it was waiting so long to medicate and find out what was really wrong with her. I knew if my heart they were seizures and I wasn't wrong. Go with your motherly instinct and demand something to be done and get a second opinion.

Re: Re: Need help with diagnosis

Submitted by kgoodfl on Wed, 2007-10-31 - 14:12
Thanks for the support FlowerPower and Kaitlynsmom - I have called his Ped Endo who is ordering an MRI for tomorrow so that was my main priority. If he has a lesion or something we need to know pronto. Unfortunately there is only one Ped Neuro in our area. I don't trust Docs who don't trust mother's instinct not to mention my 10 yr old's instinct when he feels like something is wrong. Maybe the guy is thinking munchausen by proxy or something. I know if my son is worried and wants to go to the doc - he needs to go. He has spent too much time in testing and hospital - he wouldn't want to go unless he really meant it. I guess I think that even if it doesn't turn out to be seizures it needs to be fully investigated. Again, thanks and let me know if you think of anything else or if you have any thoughts as far as which testing to do for what type of seizure. All I know is that my gut has been right more often than the docs have been!

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