Son just started Lamictal on the 11/21/10 and....
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seanr53
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Luke, 12 months on....
Well, I thought I should give you all an update over the past twelve months.
Just to give you a quick re-cap, we admitted our son Luke to Sydney Childrens Hospital (SCH) back in August 2010. This was after admitting him to Wollongong Hospital, a hospital with no neurologists on call, and could not diagnose the problem. At the time he was quite Ill with a viral infection, but what was most concerning to us was the 'black outs' and 'head drops' he was experiencing (we now know them as atonic, myoclonic, and absence seizures). Within hours, SCH night nurses identified seizure activity. I will never forget the outstanding level of care, treatment, and service we recieved at SCH.
Within days, Luke had undergone extensive testing, including MRIs, genetict testing, etc. All negative. He was started on Frisim, then Keppra, then Topamax, with limited success.
In November last year, he commenced Lamictal. We had some scares along the way, but we eventually increased his Lamictal medication up to a therapudic level in about March, 2011.
The Lamictal has been incredibly effective at controlling luke's seizures. He has gone from 5-100 seizures per day to 0 per day. Although, fevers usually trigger tonic - clonic seizures in him. We dread the flu season!
We are concerned about his development, he has recently learnt to walk, but he is very unsteady on his feet. He has nervous ticks, where he shacks his hands and head. His motor skills are still very poor - Cannot talk, cannot feed himself, point, or wave.
We are not sure whether the Lamictal is the cause of some of thee problems, or his underlying medical condition. We are seeing our Paed Neuro in a couple of weeks.
Any suggestinos on what we may ask??
Cheers,
Sean
Well, I thought I should give you all an update over the past twelve months.
Just to give you a quick re-cap, we admitted our son Luke to Sydney Childrens Hospital (SCH) back in August 2010. This was after admitting him to Wollongong Hospital, a hospital with no neurologists on call, and could not diagnose the problem. At the time he was quite Ill with a viral infection, but what was most concerning to us was the 'black outs' and 'head drops' he was experiencing (we now know them as atonic, myoclonic, and absence seizures). Within hours, SCH night nurses identified seizure activity. I will never forget the outstanding level of care, treatment, and service we recieved at SCH.
Within days, Luke had undergone extensive testing, including MRIs, genetict testing, etc. All negative. He was started on Frisim, then Keppra, then Topamax, with limited success.
In November last year, he commenced Lamictal. We had some scares along the way, but we eventually increased his Lamictal medication up to a therapudic level in about March, 2011.
The Lamictal has been incredibly effective at controlling luke's seizures. He has gone from 5-100 seizures per day to 0 per day. Although, fevers usually trigger tonic - clonic seizures in him. We dread the flu season!
We are concerned about his development, he has recently learnt to walk, but he is very unsteady on his feet. He has nervous ticks, where he shacks his hands and head. His motor skills are still very poor - Cannot talk, cannot feed himself, point, or wave.
We are not sure whether the Lamictal is the cause of some of thee problems, or his underlying medical condition. We are seeing our Paed Neuro in a couple of weeks.
Any suggestinos on what we may ask??
Cheers,
Sean
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Hi Sean, thanks for the update. It's good to know that most of Luke's seizures are basically under control. Definitely ask the pediatric neurologist about any developmental side effects the Lamictal may be having. What kinds of dosages and side effects are the norm for other kids on Lamictal? As an adult on Lamictal, I have my share of side effects, including subnormal red and white blood cell counts -- has Luke been tested for this? It can indicate a vulnerability to infection and/or a need to supplement with Vitamin B12. Does Luke take any other supplements -- again, as an adult, I'm encouraged to take Calcium/D and folic acid to counteract the Lamictal.
Some of the listed side effects for Lamictal in pediatric use include ataxia (lack of muscle coordination), dizziness, tremor, and asthenia (muscle weakness), fever, and flu syndrome -- so it's definitely worth discussing future alternative treatments with the doctor. If you haven't already ruled it out, a dietary approach might help at some point.
Best,
Nakamova
Some of the listed side effects for Lamictal in pediatric use include ataxia (lack of muscle coordination), dizziness, tremor, and asthenia (muscle weakness), fever, and flu syndrome -- so it's definitely worth discussing future alternative treatments with the doctor. If you haven't already ruled it out, a dietary approach might help at some point.
Best,
Nakamova
earlybill1
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Hi sean53
My daughter has same problems as ur son n on same Med but also vimpat. My daughters seizures come n go but 5 outta 7 days a wk we have to sit at table to watch her while she eats n goes to bathroom its better thru out the day I get her outside to play n keep her active oh she's 8 yrs old n also has speech impairement her lamictal is 100 mg 2 n the morning with 1 vimpat n 1 at night with vimpat she also has pacemaker understand armpit I don't think it even works I wish DC could get her on rite meds cause she itchy on her face n head all the time plus everything hurts she says and last she sleeps alot sometimes 2 naps a day they say sleep is good for them n she does seem to do better after naps but she's sleeping her day away just thought I would share my story with you if u know ne thing bout the seizures I'm not saying please let me know oh when she started her seizures she was 6 months old n having up to 200 a day it was hard to deal with knowing doctor n myself couldn't do ne thing she was on keppra also but never helped
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My daughter has same problems as ur son n on same Med but also vimpat. My daughters seizures come n go but 5 outta 7 days a wk we have to sit at table to watch her while she eats n goes to bathroom its better thru out the day I get her outside to play n keep her active oh she's 8 yrs old n also has speech impairement her lamictal is 100 mg 2 n the morning with 1 vimpat n 1 at night with vimpat she also has pacemaker understand armpit I don't think it even works I wish DC could get her on rite meds cause she itchy on her face n head all the time plus everything hurts she says and last she sleeps alot sometimes 2 naps a day they say sleep is good for them n she does seem to do better after naps but she's sleeping her day away just thought I would share my story with you if u know ne thing bout the seizures I'm not saying please let me know oh when she started her seizures she was 6 months old n having up to 200 a day it was hard to deal with knowing doctor n myself couldn't do ne thing she was on keppra also but never helped
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seanr53
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Update - After a long process of DNA testing, which all turned up negative, my little boy has been diagnosed with ASD.
I am not sure we at the end of our search for a diagnosis, but at least we now qualify for government assistance and can get more help for our boy. He really needs a lot of help.
I am wondering how the school system in Canada and the USA work in relation to children with learning disabilties? I think here in Australia we are a long way behind - I really worry about his future. I have been told his local schools may not accept him, and he may have to go to a "special school" a few suburbs away.......I would be interested to here peoples experiences with schooling our non-typical kids......
I am not sure we at the end of our search for a diagnosis, but at least we now qualify for government assistance and can get more help for our boy. He really needs a lot of help.
I am wondering how the school system in Canada and the USA work in relation to children with learning disabilties? I think here in Australia we are a long way behind - I really worry about his future. I have been told his local schools may not accept him, and he may have to go to a "special school" a few suburbs away.......I would be interested to here peoples experiences with schooling our non-typical kids......