Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 I can't really help regarding myoclonic jerks developing during puberty. I have myoclonic jerks in my legs that start almost as soon as I lay down. Seizure meds are the only thing I've found that works. robyn From: jeni golding <ggolding@...> Subject: myoclonic jerks Date: Wednesday, September 3, 2008, 11:50 AM gidday crew I was wondering if anyone in the group has had experience with myoclonic jerks developing in puberty. My boy, Guy, has developed these at 11.8 yrs. They can tend to go in a pattern, thighs-arms hips back and neck. He can feel them as he goes off to sleep, continue through out the night and upon waking. He has now started to feel them occasionally through the day. He has been seizure free up to this point. But that is not to say that he isn't currently having them. We are going in for a short sleep eeg today. I realise that he could have myoclonic juvenile epilepsy or they could just be benign..the other conditions the neurologist is eliminating are just too scary for me to consider. Do the children on the nids protocol avoid developing this... I understand that it is not uncommon for people with his diagnosis (PDDNOS) to develop this condition.(MJE) This is a new aspect for me and I was hoping that I could pick you brains on the effects these jerks can have on behaviour and medication used. Your knowledge and experience is highly valued as from years of experience I have found the members of this group to be well grounded and quite savvy in their approach to treatments. Thanks Golding Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Hi - I've had them on and off during the years, and I do remember them a lot in puberty/teens. They do seem to go along w/other symptoms - I think a " hot " immune system can trigger them. I haven't had them recently enough to connect them to anything, but I've definitely been & CFIDS all my life. You're right - clonipin is quite helpful for them. They don't usually stick around all that long for me. I don't think they do much harm, that they're more of a concominant symptom. I think one of the reasons they can be associated w/epilepsy (my personal and non-medical opinion) is that they can be associated w/the viral immune response, and I believe strongly that epilepsy is also a response to chronic viral issues as well - hence the strong connection. Also, so many kids on the protocol become seizure-free on antivirals - even after having had intractable seizures prior to that. HTH- myoclonic jerks groups (DOT) com Date: Wednesday, September 3, 2008, 11:50 AM gidday crew I was wondering if anyone in the group has had experience with myoclonic jerks developing in puberty. My boy, Guy, has developed these at 11.8 yrs. They can tend to go in a pattern, thighs-arms hips back and neck. He can feel them as he goes off to sleep, continue through out the night and upon waking. He has now started to feel them occasionally through the day. He has been seizure free up to this point. But that is not to say that he isn't currently having them. We are going in for a short sleep eeg today. I realise that he could have myoclonic juvenile epilepsy or they could just be benign..the other conditions the neurologist is eliminating are just too scary for me to consider. Do the children on the nids protocol avoid developing this... I understand that it is not uncommon for people with his diagnosis (PDDNOS) to develop this condition.(MJE) This is a new aspect for me and I was hoping that I could pick you brains on the effects these jerks can have on behaviour and medication used. Your knowledge and experience is highly valued as from years of experience I have found the members of this group to be well grounded and quite savvy in their approach to treatments. Thanks Golding Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 My 9 year-old son with Asperger's and I both also experience these on a regular basis. I have had them nearly all my life, sometimes more frequent and severe in intensity than others. The research that I have done on this suggests that this condition can be at least partly due to iron deficiency--likely due to a " hot " immune system and exacerbated depletion, I presume. I have increased our iron supplementation to approximately " double " the RDA doses (or slightly more than double) with very positive results. I have definitely had and/or CFIDS symptoms throughout most of my life, though have never been specifically assessed for and/or diagnosed with these conditions. In any event, for me at least, the increased iron supplementation has really proved effective and long-lasting. Just a tip for consideration... Best of luck in moderating this! Rochelle Schmit > > From: jeni golding <ggoldingbigpond (DOT) net.au> > Subject: myoclonic jerks > groups (DOT) com > Date: Wednesday, September 3, 2008, 11:50 AM > > gidday crew > I was wondering if anyone in the group has had experience with > myoclonic jerks developing in puberty. My boy, Guy, has developed > these at 11.8 yrs. They can tend to go in a pattern, thighs-arms hips > back and neck. He can feel them as he goes off to sleep, continue > through out the night and upon waking. He has now started to feel > them occasionally through the day. He has been seizure free up to > this point. But that is not to say that he isn't currently having > them. > We are going in for a short sleep eeg today. I realise that he could > have myoclonic juvenile epilepsy or they could just be benign..the > other conditions the neurologist is eliminating are just too scary > for me to consider. > Do the children on the nids protocol avoid developing this... I > understand that it is not uncommon for people with his diagnosis > (PDDNOS) to develop this condition.(MJE) > This is a new aspect for me and I was hoping that I could pick you > brains on the effects these jerks can have on behaviour and > medication used. > Your knowledge and experience is highly valued as from years of > experience I have found the members of this group to be well grounded > and quite savvy in their approach to treatments. > Thanks Golding > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Hi all It has taken time to get the eeg results which came back normal. Due to Guy (my son 12yrs) feeling tired in the mornings, after 10-12hrs sleep, we have decided to trial epilim. It would just be too easy for this to have the desired effect with out side effects that are worse than the condition we are treating. But that is what I plan on happening and considering the medication I think we have a good chance. Thanks very much for all of you night jerkers giving me insight into your experiences. I did ask the neuro about a lack of iron or magnesium causing this. He felt this was highly unlikely considering that Guy is on a general multi vitiamin. I didn't how ever pick his brain about anti virals being an effective treatment. I shall go to his pead and discuss this with him. He is very receptive to the nids protocol. Jen > > > > From: jeni golding <ggoldingbigpond (DOT) net.au> > > Subject: myoclonic jerks > > groups (DOT) com > > Date: Wednesday, September 3, 2008, 11:50 AM > > > > gidday crew > > I was wondering if anyone in the group has had experience with > > myoclonic jerks developing in puberty. My boy, Guy, has developed > > these at 11.8 yrs. They can tend to go in a pattern, thighs-arms > hips > > back and neck. He can feel them as he goes off to sleep, continue > > through out the night and upon waking. He has now started to feel > > them occasionally through the day. He has been seizure free up to > > this point. But that is not to say that he isn't currently having > > them. > > We are going in for a short sleep eeg today. I realise that he > could > > have myoclonic juvenile epilepsy or they could just be benign..the > > other conditions the neurologist is eliminating are just too scary > > for me to consider. > > Do the children on the nids protocol avoid developing this... I > > understand that it is not uncommon for people with his diagnosis > > (PDDNOS) to develop this condition.(MJE) > > This is a new aspect for me and I was hoping that I could pick you > > brains on the effects these jerks can have on behaviour and > > medication used. > > Your knowledge and experience is highly valued as from years of > > experience I have found the members of this group to be well > grounded > > and quite savvy in their approach to treatments. > > Thanks Golding > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Kristy My son, Guy, isn't a patient of Dr Goldberg's. Due to distance and finances visiting him is not an option. hhv-6 is the only thing that stood out in Guy's blood work, but I am not Dr Goldberg and nor is my paed. I just hang around picking everyones brains when need be (there are some very valuable and intelligent contributors on this list)and looking out for whats new in the autism world. He started to complain of tiredness at the time his myoclonic jerks were first noticed in April. These jerks start as he goes to sleep continue all night (10 mins is the longest I've noticed the interludes last) and are still present on first wakening. I concede that I have resorted to treating the symptom and not the underlying cause. I'm not sure that you always get a clear answer in neurology...but I am now venturing into a field I know little about and have less right to make statments. If they are interfering with his sleep, they could be contributing to his tiredness and regression in behavioural issues? He is on an adult dose of mult-v as he is a big boy. It does only have a bit of iron and folic acid not ferritin. Now thats a thought to research. As was the hhv6-epilepsy...thanks thank you all for sharing Jen > > > > > > Hi - > > > I've had them on and off during the years, and I do remember them > a > > lot in puberty/teens. They do seem to go along w/other symptoms - > I > > think a " hot " immune system can trigger them. I haven't had them > > recently enough to connect them to anything, but I've definitely > been > > & CFIDS all my life. > > > You're right - clonipin is quite helpful for them. They don't > > usually stick around all that long for me. > > > > > > I don't think they do much harm, that they're more of a > concominant > > symptom. I think one of the reasons they can be associated > > w/epilepsy (my personal and non-medical opinion) is that they can > be > > associated w/the viral immune response, and I believe strongly that > > epilepsy is also a response to chronic viral issues as well - hence > > the strong connection. Also, so many kids on the protocol become > > seizure-free on antivirals - even after having had intractable > > seizures prior to that. > > > > > > HTH- > > > > > > > > > > > > > > > myoclonic jerks > > > groups (DOT) com > > > Date: Wednesday, September 3, 2008, 11:50 AM > > > > > > gidday crew > > > I was wondering if anyone in the group has had experience with > > > myoclonic jerks developing in puberty. My boy, Guy, has developed > > > these at 11.8 yrs. They can tend to go in a pattern, thighs- arms > > hips > > > back and neck. He can feel them as he goes off to sleep, continue > > > through out the night and upon waking. He has now started to feel > > > them occasionally through the day. He has been seizure free up to > > > this point. But that is not to say that he isn't currently having > > > them. > > > We are going in for a short sleep eeg today. I realise that he > > could > > > have myoclonic juvenile epilepsy or they could just be > benign..the > > > other conditions the neurologist is eliminating are just too > scary > > > for me to consider. > > > Do the children on the nids protocol avoid developing this... I > > > understand that it is not uncommon for people with his diagnosis > > > (PDDNOS) to develop this condition.(MJE) > > > This is a new aspect for me and I was hoping that I could pick > you > > > brains on the effects these jerks can have on behaviour and > > > medication used. > > > Your knowledge and experience is highly valued as from years of > > > experience I have found the members of this group to be well > > grounded > > > and quite savvy in their approach to treatments. > > > Thanks Golding > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 It was a short sleep eeg only about 15 mins as he had alot of trouble getting to sleep. That was enough for the info they wanted. The Dr had talked about doing an over night sleep study but when I returned for the results of the eeg he suggest medication. I was pretty keen to try it as it was the end of May when the GP gave me the referal and it was the end of Sept before I got the results from the first test. That is a long time to not function at your best. I shall look up that info thanks Jen > > > > My 9 year-old son with Asperger's and I both also experience these > on > > a regular basis. I have had them nearly all my life, sometimes > more > > frequent and severe in intensity than others. The research that I > > have done on this suggests that this condition can be at least > partly > > due to iron deficiency-- likely due to a " hot " immune system and > > exacerbated depletion, I presume. > > > > I have increased our iron supplementation to approximately " double " > > the RDA doses (or slightly more than double) with very positive > > results. I have definitely had and/or CFIDS symptoms > throughout > > most of my life, though have never been specifically assessed for > > and/or diagnosed with these conditions. In any event, for me at > > least, the increased iron supplementation has really proved > effective > > and long-lasting. > > > > Just a tip for consideration. .. Best of luck in moderating this! > > > > Rochelle Schmit > > > > > > --- In groups (DOT) com, <thecolemans4@ > wrote: > > > > > > Hi - > > > I've had them on and off during the years, and I do remember them > a > > lot in puberty/teens. They do seem to go along w/other symptoms - > I > > think a " hot " immune system can trigger them. I haven't had them > > recently enough to connect them to anything, but I've definitely > been > > & CFIDS all my life. > > > You're right - clonipin is quite helpful for them. They don't > > usually stick around all that long for me. > > > > > > I don't think they do much harm, that they're more of a > concominant > > symptom. I think one of the reasons they can be associated > > w/epilepsy (my personal and non-medical opinion) is that they can > be > > associated w/the viral immune response, and I believe strongly that > > epilepsy is also a response to chronic viral issues as well - hence > > the strong connection. Also, so many kids on the protocol become > > seizure-free on antivirals - even after having had intractable > > seizures prior to that. > > > > > > HTH- > > > > > > > > > > > > > > > myoclonic jerks > > > groups (DOT) com > > > Date: Wednesday, September 3, 2008, 11:50 AM > > > > > > gidday crew > > > I was wondering if anyone in the group has had experience with > > > myoclonic jerks developing in puberty. My boy, Guy, has developed > > > these at 11.8 yrs. They can tend to go in a pattern, thighs- arms > > hips > > > back and neck. He can feel them as he goes off to sleep, continue > > > through out the night and upon waking. He has now started to feel > > > them occasionally through the day. He has been seizure free up to > > > this point. But that is not to say that he isn't currently having > > > them. > > > We are going in for a short sleep eeg today. I realise that he > > could > > > have myoclonic juvenile epilepsy or they could just be > benign..the > > > other conditions the neurologist is eliminating are just too > scary > > > for me to consider. > > > Do the children on the nids protocol avoid developing this... I > > > understand that it is not uncommon for people with his diagnosis > > > (PDDNOS) to develop this condition.(MJE) > > > This is a new aspect for me and I was hoping that I could pick > you > > > brains on the effects these jerks can have on behaviour and > > > medication used. > > > Your knowledge and experience is highly valued as from years of > > > experience I have found the members of this group to be well > > grounded > > > and quite savvy in their approach to treatments. > > > Thanks Golding > > > > > > Quote Link to comment Share on other sites More sharing options...
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