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Children's Health For health and neurological concerns in children. |
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12-27-2011, 08:26 PM | #1 | ||
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Information has been so hard to find on this subject. We have a ten year old who started having what appeared to be motor tics. After a long summer of appointments, MRI, EEG... the neurologist said that his left brain was underdeveloped , and that the 'pull' of the right brain against the left was manifesting itself in the form of these 'tics'. He was put on neurontin, originally at 400mg per day. This caused a lot of behavioral issues and worsened his already unstable emotions. We have managed to cut back to 200mg a day to stop the tics and have somewhat manageable side effects.
I have done a lot of research and come up with little to no relative information. He has a lot of check-ups to keep an eye on things, but we have been told it is a 'wait and see' thing- it might develop enough to catch up, and it might not. He has no serious impairments- just a terrible time focusing, really unstable emotionally, his mood changes 'just like that'. Simple homework might get done right away, or it may take hours of crying to get through something that he understood just fine the day before. Supposedly neurontin is the best choice for him, as he is really small for his age and the other medications of choice cause weight loss. I was curious as to whether anyone has any experience with neurological issues due to underdevelopment, and if there is anything in particular that we should keep an eye on or do to help him 'catch up'- I've been told all kinds of crazy things such as 'He needs to eat lots of greens', etc. Also if anyone has dealt with this, did it get better or stay a long-term issue? I'm sure every case is different and this is where the doctors just want to say 'wait and see'. Thank you for taking the time to read. Any input is appreciated. |
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"Thanks for this!" says: | Dmom3005 (01-23-2012) |
12-28-2011, 07:34 AM | #2 | |||
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Wisest Elder Ever
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Sometimes doctors use terms they think will help patients understand things.
I'd wonder in this case if your son has demonstrable smaller left lobe or other details. Doctors say things sometimes that really are not meant to be literally taken. One such common comment...is "you will need to be on this drug for life"... which is basically not a true statement for anyone. But they say it that way to send the message that "medical management will be needed from now on". So this doctor's statement to you may have sent an inaccurate impression to YOU. That needs to be clarified IMO. Kids develop at different rates, and often behavior may lag in some. I think Dr. Amen, and his Spect analysis would show exactly what you need answered in clearer terms. http://www.amenclinics.com/meet-dr-amen/ Also a visit to our Tourette's board, may be helpful for you and your son. There are other ways besides drugs to help a developing brain: http://neurotalk.psychcentral.com/forum25.html Check out the "sticky" threads at the top of the first page at Tourette's. They are loaded with good information that may be helpful for you.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Dmom3005 (01-23-2012) |
12-28-2011, 08:43 AM | #3 | ||
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Thank you. I browsed a lot here, but never thought to look at the Tourette's forum. We had worried about that when all of this first started going on, but were told that it had nothing to do with Tourette's because he only had two non-verbal tics that were explained by the underdevelopment, and not of unknown origin.
We live in a small town and there is only one neurologist in the area who will see children. I haven't had any problems with him, but he's quite an older man and I wonder if he's up-to-date. After the tests were done and behaviors were stabilized, we have been sent back to our regular doctor. The regular dr. wants to see him routinely for a physical and get blood/labwork done every six months. (Nothing abnormal has ever shown up.) Is this the appropriate monitoring? |
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"Thanks for this!" says: | Dmom3005 (01-23-2012) |
12-28-2011, 08:54 AM | #4 | |||
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Wisest Elder Ever
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Many things medical are self limiting... meaning the body heals the problem and it may go away.
With children, the thought is that they may "grow out of it". In children a Ticcing issue may follow a Strep infection. This is called PANDAs.... and is typically treated with long term antibiotics. So there could be a trigger for the tics, or not, depending on the situation. I'll notify one of our experts on this to come talk to you.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Dmom3005 (01-23-2012) |
12-28-2011, 09:46 AM | #5 | |||
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Wisest Elder Ever
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I've contacted someone who knows more about this than I do...
She'll be here later. Can you provide some details until then? 1) did this start suddenly? Was your son slow to develop milestones as a baby? 2) is he on ADHD medication? 3) What is his diet like? Lots of sugar? juices? 4) What exactly are his "tics"? If I were you I'd get an exact diagnosis from the neurologist ( in medical terminology) . As a parent you are entitled to that. And be aware that many neuros are not very friendly, or treat people with compassion. When they don't know something they hide that lack. I'd get a copy of the MRI report, for yourself. Some members here can understand the language and can help you understand it. If your regular doctor has a copy, see if he will give you one.(if you don't want to approach the neuro).
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | Dmom3005 (01-23-2012) |
12-29-2011, 09:04 AM | #6 | |||
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Community Support Team
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Hi
mrsD let me know of your post. My son is now in his 20s but has TS, genetic, and diagnosed when he was 10. Your doctor may be correct in ruling out TS as that usually does manifest with both verbal and motor tics. I must say I have never heard of what your neurologist has described though? and really feel for a young child being on a strong drug like Neurontin?? Does your child have a history of strep infections or has he ever had a tick bite that you are aware of? Conditions triggered by those can manifest with tics. I have more info if you require it. Even things like allergies (food and environmental) can trigger tics, and I also know of some people who have developed tics due to misalignment of the TMJ jaw region, photosensitivity and a whole bunch of other factors |
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