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Unread 01-23-2012, 09:01 PM   #21
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I believe you said "He had a EEG" But you don't have the results.

This is something I'd definately get a copy of what was written.

It sounds like something might have been in this part of the report.
If you didn't see anything in the written part of the MRI.

I would definately get this information before you go. So you can
read what it says.

I am not sure if it will help you, but after getting this information.

Going to the epilepsy room here, might be a good place to get help
on what the EEG means.

My son has epilepsy, and has seizures. Its honestly also possible
that what you describe if its like 5 seconds, or less. Could be a
simple seizure.

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Unread 01-25-2012, 07:03 AM   #22
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The doctor called in a referral to the children's neuro- they called yesterday and said he has an appointment scheduled in June. When they said it might take awhile, I thought they meant a couple of weeks or so... not 6 months. So now I'm a little unclear on what to do. I was hoping we were going to get this under control. Now apparently we're supposed to wait six more months while he takes medicine that doesn't really work anymore, but makes him crazy? Much as I hate to, I guess I'll have to make another appointment at first neurologist, because we can't wait that long. Maybe try something else out and then see what the other one says when we finally get there. It's just disheartening because I thought we were finally going to be able to take him to another doctor and start fresh.
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Unread 01-25-2012, 07:19 AM   #23
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Ask the referral neurologist's office to put you on the "cancellation" list. Tell them to call you if they get a cancellation.

There are always people cancelling appointments. But you have to be proactive and keep at them about this. I'd call frequently and you may get a much earlier appointment as a result.

Make sure you have all the reports in hand when you go to this appointment. Read them yourself. Write down all questions.

It may be helpful to keep a diary/journal, and even videotape,
episodes. Doctors understand better, when there are details and visual aids.
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei


This raccoon has come out yesterday since the snow recently melted and can't decide which cherry tomato to eat first. Hubby put them on the feeding bench yesterday morning. (he doesn't like them). They were all gone by this morning.
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Unread 01-25-2012, 07:23 AM   #24
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I understand your frustration and worry. It took me so long to get into see the doctor responsible for setting us in the correct direction. It shouldn't be like this.

Phone the department where the referred Child Neuro works at the children's hospital. Ask to speak with a nurse if you can and explain your concerns and situation, esp. regarding the meds.. Sometimes people break their appointments and you may be able to get in much sooner.

Not sure how far away from you this hospital is though.


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Unread 06-19-2012, 01:29 PM   #25
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I just wanted to come back and update. We finally had the appointment this morning with the pediatric neurologist. We went in expecting to have his tests redone and wanted to find an alternative medication for the neurontin.

He reviewed the tests, asked some questions, and pretty much said that the results all looked normal to him on the EEG and MRI. He said the other neurologist has many years of general experience, but not in the pediatric area- he said that the MRI films of the brain look normal, that they might be a little slower growth than average but that there was nothing wrong on it. BIG change from what we were told previously... that the left portions were underdeveloped and causing these issues. Today we were told to take him off the medication, and that if he is still having the tics it's nothing to be really concerned with. As long as it isn't bothering him, leave it alone. He may outgrow it and may not. The doctor also suspected some anxiety issues and tendencies of OCD, which he seemed to think were all common together.

We are going to get him off the medication, which will hopefully solve a lot of the behavioral issues that arose while he was on it, and see how it goes from there. This neurologist said he didn't think we needed to come back, but were welcome to, and even wrote down his email address and a few suggestions of reading materials. I wish it hadn't taken seven months for us to get this appointment. I am upset that we were so mislead. There is a huge difference in one neurologist telling us that his brain is not developed and may never be, that he will probably always be on the medication, etc., and hearing today that there's really nothing too abnormal going on. The first neuro told us upfront that he didn't usually deal with children, and recommended a pediatric visit as well (just didn't think it would take so long), but it seems to me if he's so inexperienced in reading children's test results, that he'd be a little more wary of giving such a diagnosis. Anyway, we are pleased with the good news and now it's just a watch-and-see thing. Thanks again to everyone who took the time to respond.
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Unread 06-27-2012, 10:46 AM   #26
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wow Roxy, I am have'nt been here to learn about your son before today, but i am so sorry that you had to wait so long to get him to a Pediatric Neurologist, i Guess i should not be discouraged about waiting 3 month for my daughters appointment in sep.

My daughter i almost 9, and has just resently developed a tic, that seams to be getting worse after her pediatric gave her antibiotic for a trace of strep from a blod test.
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Unread 06-27-2012, 03:05 PM   #27
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Originally Posted by MsTati View Post
My daughter i almost 9, and has just resently developed a tic, that seams to be getting worse after her pediatric gave her antibiotic for a trace of strep from a blod test.
Sorry to hear that you had to wait as well. We live in a rural area and there aren't many choices of physicians. The pediatric neurologist said we'll just have to wait and see if he outgrows the tics, but since he'd had them over a year, consistently, it seemed unlikely. He started medication last August (which now seems it was unnecessary in the first place), and then we decreased the dose by half in December. When we decreased it, the tics started appearing again for awhile. He had no lapses in taking it, so I guess we don't really know if the tics continued all that time. Now that he's stopped taking it altogether, it's funny but I've barely noticed him doing it at all. I suppose it's just a wait-and-see.

I hope the best for you and your daughter. It's hard not to worry, even if you're told it's harmless. Maybe they will find some answers for you.
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