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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

So he has a growth hormone

Submitted by SunflowerPower on Wed, 2007-10-31 - 10:18
So he has a growth hormone deficiency and blackouts and he hasn't had an MRI??? That's horrendous. Get another doctor. Pronto. Has he had a CT?

Re: So he has a growth hormone

Submitted by kgoodfl on Wed, 2007-10-31 - 14:14
No CT either. He had an MRI without contrast back when he was 5 and all this started. In my mind - new symptoms, new MRI and apparently the ped endo and pediatrician agree even if the neuro doesn't.

Re: Re: So he has a growth hormone

Submitted by SunflowerPower on Thu, 2007-11-01 - 11:52
Is your doctor older? I think old docs still think about MRIs like they used to be in the old days when having an MRI done was a rare, special, and very expensive thing. I had an MRI last year when all my symptoms started. A few months ago I woke up with my left side weaker than my right side. It was really obvious at first but it's slowly improved. I went to my GP, and I didn't know it at the time, but when I ordered my medical records, it shows that my reflexes were uneven. They are even now though. My doctors have not ordered an MRI for this new symptom, because my MRI last year was normal. I don't see why it would be such a big deal to have another MRI. I haven't pushed the issue because I'm tried of pushing. Oh well. I hope I didn't have a small stroke or develop a brain lesion. I guess I'll never know.

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