Re: AnOtHeR cRaZy QuEsTiOn

[Guest guest]

I just posted a question about cramping also. Were are you cramping at.

I get them in several places but the stomach mostly. I have type 3 and

I am 32. They have been getting worse over the past couple of years.

Terry

> Does severely cramping as cramps signs of worsening of SMA type 3 ?

> Also can SMA 3 cause the stomach not to digest?

>

> Love & Blessings Be,

> List Owner & Moderator : Lee aka Becky

>

>

>

>

[Guest guest]

My son Ian type 3 by Bach, but diagnosed a 2. He is 7 and still can walk some.

Anyways he was diagnosed at age 3 with a slow digestive system. He doesn't eat

too great because it takes his food longer to digest. I have got to say though

something to do with vivonex on has upped his appitite. I guess because it is

easier to digest and all that he has more room.

Missy

GalacticaCross@... wrote:

Does severely cramping as cramps signs of worsening of SMA type 3 ?

Also can SMA 3 cause the stomach not to digest?

Love & Blessings Be,

List Owner & Moderator : Lee aka Becky

[Guest guest]

In a message dated 6/17/2005 11:35:54 P.M. Central Daylight Time,

writes:

Message: 21

Date: Sat, 18 Jun 2005 02:10:44 -0000

From: " Terry Willoughby " <tntw3@...>

Subject: Re: Another Crazy Question

I just posted a question about cramping also. Were are you cramping at.

I get them in several places but the stomach mostly. I have type 3 and

I am 32. They have been getting worse over the past couple of years.

Terry

Terry;

I'm asking because of my little sister (even though we both have

SMA 3), she's having a awful time with her stomach not digesting. She has had

feeding tube for nearly two years, but now her formula makes her sick and right

now they're giving baby formula and she's eating by mouth too, because she

stays hungry.

Love & Blessings Be,

Becky

[Guest guest]

I have never been a good eater bad appetite all my life, I don't know

if it has anything to do with SMA.

Terry

[Guest guest]

Same here.

Lori

Terry Willoughby wrote:<>

>I have never been a good eater bad appetite all my life

Terry

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[Guest guest]

eating has only been a problem for me when it's been hard to breathe or if

a food is difficult to chew or negotiate (corn on the cob, fat

sandwiches...). my ventilator and being in charge of my menu have solved

these problems. i eat small amounts but have a good appetite and an

adventurous palate. my niece with sma is similar to me, though, less

adventurous.

alana

At 06:20 PM 6/19/2005, you wrote:

>I have never been a good eater bad appetite all my life, I don't know

>if it has anything to do with SMA.

>

>Terry

[Guest guest]

I have always been a picky eater and underweight until this year when

I purposely began eating more than usual to gain weight. Ever since, I

eat more than ever and love it! I do have difficulty of my jaw

becoming tired after eating for so long and, also, tough foods such as

breads or rolls and some fruits are too much for me to chew. Usually I

cut my fruits into small pieces and only eat one slice of bread on my

sandwich and nibble at the other slice over time.

-Kendra

> I have never been a good eater bad appetite all my life, I don't know

> if it has anything to do with SMA.

>

> Terry

[Guest guest]

What age did you start showing signs?

> Same here.

>

> Lori

>

>

> Terry Willoughby wrote:<>

>

> >I have never been a good eater bad appetite all my life

> Terry

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So

all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..)

may

> occur occasionally in emails. Over use of inappropriate language

will

> not be allowed. If your under 16 ask your parents/gaurdian before

you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the

disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

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> oogroups.com

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> List manager: (Sexy Mature Artist) Email: Esma1999@a...

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> --------------------------------------------------------------------

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> *

[Guest guest]

Very early...~6 months old.

L

Terry Willoughby wrote:

> What age did you start showing signs?

> > Same here.

> >

> > Lori

> >

> >

> > Terry Willoughby wrote:<>

> >

> > >I have never been a good eater bad appetite all my life

> > Terry

> >

> >

> >

> >

> > A FEW RULES

> >

> > * The list members come from many backgrounds, ages and beliefs So

> all

> > members most be tolerant and respectful to all members.

> >

> > * Some adult language and topics (like sexual health, swearing..)

> may

> > occur occasionally in emails. Over use of inappropriate language

> will

> > not be allowed. If your under 16 ask your parents/gaurdian before

> you

> > join the list.

> >

> > * No SPAMMING or sending numerous emails unrelated to the topics of

> > spinal muscular atrophy, health, and the daily issues of the

> disabled.

> >

> > Post message:

> > Subscribe: -subscribe

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> >

> >

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> > List manager: (Sexy Mature Artist) Email: Esma1999@a...

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> >

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[Guest guest]

Hi

I just read your email and I was not sure that I read it right... Do

you and your niece have SMA?

Sorry to be so nosey but I have type 3, my younger sister had type 2

and my niece has just been diagnosed with type 1 SMA and so I read

with interest you mentioning your problems and your niece. As I have

not come across someone else with a reoccurrence of the condition so

early in the next generation.

Thankfully I dont have any major problems with breathing and so long

as I am careful about what I eat I am usually fine, with only the

occasional mishap with swallowing.

If I have misunderstood my apologies, but I am keen to meet a few

more people via this site.

All the best Vivien

> >I have never been a good eater bad appetite all my life, I don't

know

> >if it has anything to do with SMA.

> >

> >Terry

[Guest guest]

That is early I started about 8 Yrs old I didn't notice it my Mom

did. I had been mis diagnosed several time I just thought I was

shinny and weak and had hope of there being something that would fix

me but that is not going to happen.

Terry

<>

> > >

> > > >I have never been a good eater bad appetite all my life

> > > Terry

> > >

> > >

> > >

> > >

> > > A FEW RULES

> > >

> > > * The list members come from many backgrounds, ages and beliefs

So

> > all

> > > members most be tolerant and respectful to all members.

> > >

> > > * Some adult language and topics (like sexual health,

swearing..)

> > may

> > > occur occasionally in emails. Over use of inappropriate language

> > will

> > > not be allowed. If your under 16 ask your parents/gaurdian

before

> > you

> > > join the list.

> > >

> > > * No SPAMMING or sending numerous emails unrelated to the

topics of

> > > spinal muscular atrophy, health, and the daily issues of the

> > disabled.

> > >

> > > Post message:

> > > Subscribe: -subscribe

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[Guest guest]

Valarie-

This is Lynne- my daughter Sis had the same stomach thing. Still does

here and there. Her doc put her on hycosamine, it goes under the tongue, it

stops the pain, she's also on prevacid. I hope that will help.

Lynne- mom to Sis - reflux, asthma, IGG def, subclasses low, puesdo tumor

cerebri

osdbmom <osdbmom@...> wrote:

So, , what you are saying here is that BOTH conner and donovan

are odd, genetic freaks.I know thats what you are saying, LOL....and

dont freak me out, he has the long eyelashes, arched

eyebrows........no more genetic stuff!!!But, Amy in the asthma group

has a son with aspergers, and is looking into the immune stuff now,

mind if I cut and send that to her? valarie

good luck with the results. ours wont be back until NEXT

WEEK..meaning, the longest time ever, ever, EVER in the history of the

world ever, with every single day being 586 hours long, ever.

We are dealing AGAIN with savannah having another screaming stomach

pain attack today, the kind that has been analyzed to death with still

no answer, the kind that doubles her over and she cant even sip water,

pain, b/c she says just sipping makes her stomach hurt more. She is

flushed but has no fever. I wish there was something I could do to fix

this. IT drives me nuts to have no answers about it, and to be unable

to help her. She was playing and having a nice, normal day, and said,

I think I am hungry, can I fix a hot dog? and I said yes. So she

heated it, started to cut it, didnt even take a BITE, and fell down

with the stomach pain. Its been over 2 hrs now. HOw long can I leave

her screaming and holding her stomach? this has been going on for 6

yrs now, and no answers. But, this yr it really does seem worse. at

wits end here. Is it worth it to take her in, b/c i KNOW nothing will

be done, unless she gets dehydrated. But if I tkae her in when she is

dehydrated, then I get the riot act for letting her get that way.

I am sure you can all feel this frustration.

valarie

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Valarie-

This is Lynne- my daughter Sis had the same stomach thing. Still does

here and there. Her doc put her on hycosamine, it goes under the tongue, it

stops the pain, she's also on prevacid. I hope that will help.

Lynne- mom to Sis - reflux, asthma, IGG def, subclasses low, puesdo tumor

cerebri

osdbmom <osdbmom@...> wrote:

So, , what you are saying here is that BOTH conner and donovan

are odd, genetic freaks.I know thats what you are saying, LOL....and

dont freak me out, he has the long eyelashes, arched

eyebrows........no more genetic stuff!!!But, Amy in the asthma group

has a son with aspergers, and is looking into the immune stuff now,

mind if I cut and send that to her? valarie

good luck with the results. ours wont be back until NEXT

WEEK..meaning, the longest time ever, ever, EVER in the history of the

world ever, with every single day being 586 hours long, ever.

We are dealing AGAIN with savannah having another screaming stomach

pain attack today, the kind that has been analyzed to death with still

no answer, the kind that doubles her over and she cant even sip water,

pain, b/c she says just sipping makes her stomach hurt more. She is

flushed but has no fever. I wish there was something I could do to fix

this. IT drives me nuts to have no answers about it, and to be unable

to help her. She was playing and having a nice, normal day, and said,

I think I am hungry, can I fix a hot dog? and I said yes. So she

heated it, started to cut it, didnt even take a BITE, and fell down

with the stomach pain. Its been over 2 hrs now. HOw long can I leave

her screaming and holding her stomach? this has been going on for 6

yrs now, and no answers. But, this yr it really does seem worse. at

wits end here. Is it worth it to take her in, b/c i KNOW nothing will

be done, unless she gets dehydrated. But if I tkae her in when she is

dehydrated, then I get the riot act for letting her get that way.

I am sure you can all feel this frustration.

valarie

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Dora -

There is also Claravale but it is just as expensive.

If you are near Los Angeles, you can buy Organic Pastures milk from

their hub store downtown for $6/half gallon ($12/gallon). That's for

the fresh milk. You can often get 7 day old milk for $10/gallon and

they almost always have expired milk for $8/gallon. The expired milk

will last in your fridge up to 5-6 days or so.

What I do is go to the hub store every 2 weeks, and freeze all the

milk, cheese and butter immediately. I often get the expired milk

since we go through it fast -- and I also use it for making kefir and

yogurt. I only get fresh milk for the baby's formula.

If you buy 10 half gallons, they give you one free. If you buy 10

1/2 gallons at a time, and you buy the expired milk, it comes to $7.28/

gallon. If you bring a friend, they will also give you another half

gallon for free. Which would bring it down to $6.67/gallon.

The address for the hub store is on the Organic Pastures website. It's

near downtown. They are open every Saturday from 2-5 pm.

There may also be other options -- i.e. having milk shipped to you or

picking it up on a smaller farm. I'd love to hear if anyone has other

ideas for Southern California.

Ann Marie

On Mar 17, 2008, at 9:15 AM, Dora wrote:

> So how much does a gallon of raw milk cost in your area? I am in

> Southern California and it is $15 a gallon...could this be due to the

> fact that it is readily available in the HFSs? Is there more than one

> provider than the Organic Pastures?

[Guest guest]

I'm not exactly close, but it bears exploring the option.

Would freezing kill the good enzymes in the milk and milk products?

Dora

>

> > So how much does a gallon of raw milk cost in your area? I am in

> > Southern California and it is $15 a gallon...could this be due to

the

> > fact that it is readily available in the HFSs? Is there more

than one

> > provider than the Organic Pastures?

>

[Guest guest]

--- Dora <adorablemama@...> wrote:

> So how much does a gallon of raw milk cost in your area? I am in

> Southern California and it is $15 a gallon...could this be due to the

> fact that it is readily available in the HFSs? Is there more than one

> provider than the Organic Pastures?

Dora,

In Central Texas, raw milk ranges from $6 to $12 a gallon. I know of

only three farms that sell it and they are all about 1.5 to 3 hours of

driving time away. It is legally sold on the farm only, although

typically people find more efficient ways to get it distributed than

having every family go to the farm. I have a blog post on one of

these dairies: http://stay-healthy-enjoy-life.blogspot.com

They sell their milk at $10 to $12 a gallon, cheaper if you join their

buying club. They are the only raw dairy in Texas that does not feed

any grain. The other two feed grain at milking time. I pay $6 a

gallon for the milk I get and $8 a quart for cream, from an all-Jersey

herd.

[Guest guest]

You can also call Organic Pastures and see if there is a way to

organize a buying club. They will ship at discounted prices if you

place large orders. I haven't checked into this but it might be

another option.

Also I have a price list someone sent me for a farm in PA... they ship

all over. It's cheaper -- and they have grass-fed meats too. I was

going to look into it myself. I'll send to you off list.

1. Does freezing damage raw dairy products?

Freezing puts raw milk products to sleep and has little effect on the

important health benefits that raw dairy products provide. Enzymes and

bacteria are fully active when they awake after thawing. Some vitamins

are reduced by trace amounts after being frozen. The flavor is

sometimes slightly affected by this and is not always apparent. All

OPDC products may be frozen. Thawing should be done by placing the

frozen product in a regular refrigerator for a day. Milk should be

shaken to mix up the butterfat after thawing. Warming the product to

room temperature just prior to drinking will also make the fat blend

in better with the milk (if it has clumped or separated during

freezing).

http://www.organicpastures.com/faq.html

On Mar 17, 2008, at 10:15 AM, Dora wrote:

> I'm not exactly close, but it bears exploring the option.

>

> Would freezing kill the good enzymes in the milk and milk products?

>

> Dora

[Guest guest]

I've spent 6-7 dollars/gallon on my raw milk. I drive a couple towns

over to buy it from a farmer.