Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Jen, My NT 6 y.o. daughter used to complain all the time about being tired, despite 11-12 hours sleep a night. Dr. G said to try her on ferritin, and one capsule every other day for her (she weighs ~32 pounds) did the trick! I still get so discouraged by so many doctors who do not pay nearly enough attention to the nutrients our bodies need and how we get them. Just because your son is on a multi does not mean he is able to absorb all those nutrients. Many multis, especially for kids, don't even have iron and/or ferritin (Ferritin is a protein <http://www.webmd.com/hw-popup/protein> in the body that binds to iron; most of the iron stored in the body is bound to ferritin), and taking them with certain other nutrients (or not taking them with certain other nutrients) can prevent them from being absorbed. I'm not giving med advice, just sharing what worked really well for my daughter. Is your son a patient of Dr. Goldberg? Kristy From: [mailto: ] On Behalf Of jeni golding Sent: Friday, October 03, 2008 7:01 AM Subject: Re: myoclonic jerks 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, Where do you buy the ferritin, Dr. G prescribed to our son an iron supplement. Thanks, Argie On Oct 3, 2008, at 1:39 PM, Kristy Nardini wrote: > Jen, > > My NT 6 y.o. daughter used to complain all the time about being tired, > despite 11-12 hours sleep a night. Dr. G said to try her on > ferritin, and > one capsule every other day for her (she weighs ~32 pounds) did the > trick! > > I still get so discouraged by so many doctors who do not pay nearly > enough > attention to the nutrients our bodies need and how we get them. Just > because > your son is on a multi does not mean he is able to absorb all those > nutrients. Many multis, especially for kids, don't even have iron > and/or > ferritin (Ferritin is a protein <http://www.webmd.com/hw-popup/ > protein> in > the body that binds to iron; most of the iron stored in the body is > bound to > ferritin), and taking them with certain other nutrients (or not > taking them > with certain other nutrients) can prevent them from being absorbed. > > I'm not giving med advice, just sharing what worked really well for my > daughter. Is your son a patient of Dr. Goldberg? > > Kristy > > From: [mailto: ] On Behalf > Of jeni > golding > Sent: Friday, October 03, 2008 7:01 AM > > Subject: Re: myoclonic jerks > > 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 Was the EEG part of a sleep study? I'd recommend you google Dr Klimas and sleep and CFS - she discusses this a lot, re some stages of sleep that are dysfunctional in CFIDS... 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 I got it at a local specialty pharmacy. They do mail order: Arcana Pharmacy, 858.755.02388 From: [mailto: ] On Behalf Of Argie Olivo Sent: Friday, October 03, 2008 2:33 PM Subject: Re: Re: myoclonic jerks Kristy, Where do you buy the ferritin, Dr. G prescribed to our son an iron supplement. Thanks, Argie On Oct 3, 2008, at 1:39 PM, Kristy Nardini wrote: > Jen, > > My NT 6 y.o. daughter used to complain all the time about being tired, > despite 11-12 hours sleep a night. Dr. G said to try her on > ferritin, and > one capsule every other day for her (she weighs ~32 pounds) did the > trick! > > I still get so discouraged by so many doctors who do not pay nearly > enough > attention to the nutrients our bodies need and how we get them. Just > because > your son is on a multi does not mean he is able to absorb all those > nutrients. Many multis, especially for kids, don't even have iron > and/or > ferritin (Ferritin is a protein <http://www.webmd.com/hw-popup/ > protein> in > the body that binds to iron; most of the iron stored in the body is > bound to > ferritin), and taking them with certain other nutrients (or not > taking them > with certain other nutrients) can prevent them from being absorbed. > > I'm not giving med advice, just sharing what worked really well for my > daughter. Is your son a patient of Dr. Goldberg? > > Kristy > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf > Of jeni > golding > Sent: Friday, October 03, 2008 7:01 AM > <mailto:%40> > Subject: Re: myoclonic jerks > > 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 Thank YOU! On Oct 3, 2008, at 7:26 PM, Kristy Nardini wrote: > I got it at a local specialty pharmacy. They do mail order: Arcana > Pharmacy, > 858.755.02388 > > From: [mailto: ] On Behalf > Of Argie > Olivo > Sent: Friday, October 03, 2008 2:33 PM > > Subject: Re: Re: myoclonic jerks > > Kristy, > > Where do you buy the ferritin, Dr. G prescribed to our son an iron > supplement. > > Thanks, > Argie > On Oct 3, 2008, at 1:39 PM, Kristy Nardini wrote: > > > Jen, > > > > My NT 6 y.o. daughter used to complain all the time about being > tired, > > despite 11-12 hours sleep a night. Dr. G said to try her on > > ferritin, and > > one capsule every other day for her (she weighs ~32 pounds) did the > > trick! > > > > I still get so discouraged by so many doctors who do not pay nearly > > enough > > attention to the nutrients our bodies need and how we get them. Just > > because > > your son is on a multi does not mean he is able to absorb all those > > nutrients. Many multis, especially for kids, don't even have iron > > and/or > > ferritin (Ferritin is a protein <http://www.webmd.com/hw-popup/ > > protein> in > > the body that binds to iron; most of the iron stored in the body is > > bound to > > ferritin), and taking them with certain other nutrients (or not > > taking them > > with certain other nutrients) can prevent them from being absorbed. > > > > I'm not giving med advice, just sharing what worked really well > for my > > daughter. Is your son a patient of Dr. Goldberg? > > > > Kristy > > > > From: <mailto:%40> > [mailto: <mailto:%40> ] On > Behalf > > Of jeni > > golding > > Sent: Friday, October 03, 2008 7:01 AM > > <mailto:%40> > > Subject: Re: myoclonic jerks > > > > 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...
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