Re: cal/mag conversion/Sharry

[Guest guest]

Hi Sharry!! I just came accross your post! I am curious about the

spasms? Has he been to neurologist? Magnesium!! We too seen good

benefits with this mineral. It is considered the calming mineral,

where I believe calcium is considered the stimuli mineral. We dont

add the calcium but on rare occaision due to it can be constipating.

But I can say that ever since we added magnesium, our sons complex

grand mal seizures have stopped. He has had a couple of petits, but

the severe ones have not happened in months. We believe this is do to

the magnesium and better running gi. His seizures where typically

triggered from a stressed gi or viruses. Now even if his gi is

stressed no seizures are triggered, I believe due to the magnesium. I

realize that muscle spasms are considered non seizure but the

symptoms are so similar, that is why I asked if he has seen a neuro!

Jennie<><

> >

> > Hey all,

> >

> > I wanted to ask - I know it's been discussed before, but it

would

> help me if people could report again their child's magnesium

dose? We

> are switching from MOM to liquid cal/mag. We've used cal/mag in

the

> past for his muscles, so that works well for us.

> >

> > My guy is about 70 pounds. Per his G.I., he was on 10cc (2 tea)

of

> Milk of Magnesia a day. The liquid cal/mag is about 350mg/15cc,

so I

> think that would be about 13-14cc a day for him to compare to the

milk

> of magnesia?

> >

> >

> > sharry, aidan's mom

> >

>

>

>

>

>

>

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[Guest guest]

Dear Jennie,

Sorry I didn't get a chance to reply to you before now. It's been a rough week.

Yes, dystonia and seizures carry some similarities - some differences too. It would take a long time to list the similarities and differences!

But yes, Aidan has been to a neurologist. Several -- epileptologists and MD's (movement disorder specialists) and neurosurgeons. Unfortunately, treating his disorder is just very difficult. It is progressive, and very painful. Right now he has a pump of muscle relaxers in his stomach that releases into his neck. It's been a disaster. We are hopefully going to remove it soon, and hopefully he can rest some before we talk about our last real option (besides band-aiding the situation with medications until he overrides them or the side effects overwhelm him.) That is a brain surgery similar to the VNS called DBS - where the electrodes go into the basal ganglias in the brain.

I hope we don't have to go there. But I am so tired of watching him suffer, and of trying so so hard to keep up with what is happening to his system along the way. It's a very delicate balance between his muscle disorder and his meds when it comes to his stomach and peeing. His stomach in particular really can't handle all the meds it takes to keep his muscles from hurting him.

thanks for all the great conversation here. i'm enjoying it.

I used to be a completely all natural mom - I gave birth to one baby at home, and never gave her tylenol until she was almst three. But life changes you sometimes in ways you can't predict. It's been hard - we try to stick to our roots as much as we can. (one reason for going back to liquid cal/mag.) We also started liquid b again (PPI's deplete b, we've read), and finally found a multi that doesn't make him gag or choke (they're jelly beans!) We do a round of acidophilus every so often (always with antibiotics), and mine was getting oldish so I just started a round of that too.

It's all we can do to support him the best we can. I think dried fruit helps a ton too. And hydration hydration hydration. Aidan can hardly drink enough because the dystonia burns liquids as well as calories. Now if only he could eat salad....(only joking...I'm not ever allowed to complain about that - it's a miracle he can eat. He is a huge success story with eating. But I dont have much room to play with his diet or his really high calorie intake would falter. And the whole oral feeding thing hinges on that success.)

sharry

[Guest guest]

Sharry, I somehow missed your whole story but I would like to let you know that I seen a pediatric Neorologist and would like to share what he told me about Miralax. Could you repost what happened to you? The procedure you're talking about sounds no different than the way they've used shock treatments, and It would help if I knew the whole story.......... thank JeanieChad & Sharry Grasmick wrote: Dear Jennie, Sorry I didn't get a chance to reply to you before now. It's been a rough week. Yes, dystonia and seizures carry some similarities - some differences too. It would take a long time to list the similarities and differences! But yes, Aidan has been to a neurologist. Several -- epileptologists and MD's (movement disorder specialists) and neurosurgeons. Unfortunately, treating his disorder is just very difficult. It is progressive, and very painful. Right now he has a pump of muscle relaxers in his stomach that releases into his neck. It's been a disaster. We are hopefully going to remove it soon, and hopefully he can rest some before we talk about our last real option (besides

band-aiding the situation with medications until he overrides them or the side effects overwhelm him.) That is a brain surgery similar to the VNS called DBS - where the electrodes go into the basal ganglias in the brain. I hope we don't have to go there. But I am so tired of watching him suffer, and of trying so so hard to keep up with what is happening to his system along the way. It's a very delicate balance between his muscle disorder and his meds when it comes to his stomach and peeing. His stomach in particular really can't handle all the meds it takes to keep his muscles from hurting him. thanks for all the great conversation here. i'm enjoying it. I

used to be a completely all natural mom - I gave birth to one baby at home, and never gave her tylenol until she was almst three. But life changes you sometimes in ways you can't predict. It's been hard - we try to stick to our roots as much as we can. (one reason for going back to liquid cal/mag.) We also started liquid b again (PPI's deplete b, we've read), and finally found a multi that doesn't make him gag or choke (they're jelly beans!) We do a round of acidophilus every so often (always with antibiotics), and mine was getting oldish so I just started a round of that too. It's all we can do to support him the best we can. I think dried fruit helps a ton too. And hydration hydration hydration. Aidan can hardly drink enough because the dystonia burns liquids as well as

calories. Now if only he could eat salad....(only joking...I'm not ever allowed to complain about that - it's a miracle he can eat. He is a huge success story with eating. But I dont have much room to play with his diet or his really high calorie intake would falter. And the whole oral feeding thing hinges on that success.) sharry