Lori

[Guest guest]

good to hear you are safe.

Re: Lori

Hi Y'all,

All is well here. Spent the night at Best Western and came home at

about 2pm today. The electricity went out at the hotel at 7:30am

today and ours was out when we got home but is on now. Our neighbor

said it went off about 6:30am. thinks they were temporarily

diverting power to critical areas (med center, etc) per news reports

because the storm was over by then. The hotel manager was kind

enough to put the elevator on emergency power so I could get

downstairs. We had a small breakfast while trying to decide what to

do next. It was still uncertain whether the rain would start again.

After we got home and the power went on, the transformer behind our

house started smoking and sparking after the electricity went on.

called 911 and the fire departmet came within five minutes

(wow). They said it was ok and that CenterPoint would come soon.

They did and fixed it. It was scary but was quickly over. So all

is well now.

We were very lucky the storm moved to the east during the evening

and night. I was pretty nervous for a while.

So here we are...home sweet home...thank goodness.

Thank you all for the thoughts and concern. :-)

Lori

> sounds grim lori

> though i am sure you will deal with it very capably

> will be thinking of you and watching the international news

>

> linda

>

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[Guest guest]

Lori,

I'm glad you and are home safe & sound! Were your pets scared? -a

Lori <those2@...> wrote:

Hi Y'all,

All is well here. Spent the night at Best Western and came home at

about 2pm today. The electricity went out at the hotel at 7:30am

today and ours was out when we got home but is on now. Our neighbor

said it went off about 6:30am. thinks they were temporarily

diverting power to critical areas (med center, etc) per news reports

because the storm was over by then. The hotel manager was kind

enough to put the elevator on emergency power so I could get

downstairs. We had a small breakfast while trying to decide what to

do next. It was still uncertain whether the rain would start again.

After we got home and the power went on, the transformer behind our

house started smoking and sparking after the electricity went on.

called 911 and the fire departmet came within five minutes

(wow). They said it was ok and that CenterPoint would come soon.

They did and fixed it. It was scary but was quickly over. So all

is well now.

We were very lucky the storm moved to the east during the evening

and night. I was pretty nervous for a while.

So here we are...home sweet home...thank goodness.

Thank you all for the thoughts and concern. :-)

Lori

> sounds grim lori

> though i am sure you will deal with it very capably

> will be thinking of you and watching the international news

>

> linda

>

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@...

oogroups.com

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

[Guest guest]

Glad to hear you're safe!

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03 - she's two!

A new addition to arrive December 1st, 2005- it's a boy!

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

Thanks, a. They were a little shaken but aok...kinda like us.

Things are getting a bit back to normal. A couple of gas stations are

opening and several restaurants. It's so weird how we take these things

for granted. We just met a friend at Starbucks and it was packed.

Usually it's quiet on a Sunday afternoon but I think we all just needed

to get out of the house and see other people...just be normal.

L

a B. wrote:

> Lori,

>

> I'm glad you and are home safe & sound! Were your pets scared?

> -a

>

> Lori <those2@...> wrote:

> Hi Y'all,

>

> All is well here. Spent the night at Best Western and came home at

> about 2pm today. The electricity went out at the hotel at 7:30am

> today and ours was out when we got home but is on now. Our neighbor

> said it went off about 6:30am. thinks they were temporarily

> diverting power to critical areas (med center, etc) per news reports

> because the storm was over by then. The hotel manager was kind

> enough to put the elevator on emergency power so I could get

> downstairs. We had a small breakfast while trying to decide what to

> do next. It was still uncertain whether the rain would start again.

>

> After we got home and the power went on, the transformer behind our

> house started smoking and sparking after the electricity went on.

> called 911 and the fire departmet came within five minutes

> (wow). They said it was ok and that CenterPoint would come soon.

> They did and fixed it. It was scary but was quickly over. So all

> is well now.

>

> We were very lucky the storm moved to the east during the evening

> and night. I was pretty nervous for a while.

>

> So here we are...home sweet home...thank goodness.

>

> Thank you all for the thoughts and concern. :-)

>

> Lori

>

[Guest guest]

me too!

blueyedaze@... wrote:Glad to hear you're safe!

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03 - she's two!

A new addition to arrive December 1st, 2005- it's a boy!

http://www.babiesonline.com/babies/o/oliviathegreat/

[Guest guest]

Thank you! :-)

blueyedaze@... wrote:

> Glad to hear you're safe!

>

> Amy

> Wife to Will 11/3/95

> Mama to Olivia Isabelle 9/18/03 - she's two!

> A new addition to arrive December 1st, 2005- it's a boy!

> http://www.babiesonline.com/babies/o/oliviathegreat/

>

>

>

>

[Guest guest]

lori,

glad to hear you are okay...whew!

what a scary situation, ive been glued to the news but glad it

wasnt as bad as Katrina, although still something nobody wants to go

through...

have had limited access lately online...my laptop finally died...may

it rest in peace...and although i got a new desktop, i am unable to

figure out the wireless net hookupmyself, so am waiting for an

available person to come out, which is tough because the only day im

home now in the day is monday, which i usually reserve for errands,

appts, or wknds, but i think next week it may work.......sooo, ive

been trying to get online as i can at school--like today

>

> > Glad to hear you're safe!

> >

> > Amy

> > Wife to Will 11/3/95

> > Mama to Olivia Isabelle 9/18/03 - she's two!

> > A new addition to arrive December 1st, 2005- it's a boy!

> > http://www.babiesonline.com/babies/o/oliviathegreat/

> >

> >

> >

> >

[Guest guest]

Thank you...yes, aok! Good luck with your computer! I am lost without

the net.

Lori

wrote:

> lori,

> glad to hear you are okay...whew!

> what a scary situation, ive been glued to the news but glad it

> wasnt as bad as Katrina, although still something nobody wants to go

> through...

>

> have had limited access lately online...my laptop finally died...may

> it rest in peace...and although i got a new desktop, i am unable to

> figure out the wireless net hookupmyself, so am waiting for an

> available person to come out, which is tough because the only day im

> home now in the day is monday, which i usually reserve for errands,

> appts, or wknds, but i think next week it may work.......sooo, ive

> been trying to get online as i can at school--like today

>

>

[Guest guest]

im feeling lost too, especially when I came saturday to use the

computer lab only to have them close it early due to staffing

issues...grrrr

i should actually be doing homework now, instead of everything BUT

that...so back to it!

>

> > lori,

> > glad to hear you are okay...whew!

> > what a scary situation, ive been glued to the news but glad it

> > wasnt as bad as Katrina, although still something nobody wants

to go

> > through...

> >

> > have had limited access lately online...my laptop finally

died...may

> > it rest in peace...and although i got a new desktop, i am unable

to

> > figure out the wireless net hookupmyself, so am waiting for an

> > available person to come out, which is tough because the only

day im

> > home now in the day is monday, which i usually reserve for

errands,

> > appts, or wknds, but i think next week it may work.......sooo,

ive

> > been trying to get online as i can at school--like today

> >

> >

[Guest guest]

Hi Fran! This could take forever....you know me and LONG posts....

So, here goes.......

Nino originally had genetic testing done-privately with Dr. Groh (GeneDX-not

covered at all...)FMF-2x's, HIDS, TRAPS. Once we FINALLY arrived at the NIH

with liver and kidney issues, PLUS all the fever related issues-3years ago...Dr.

Kastner did many genetic studies. Completely ruled out , due to symptoms,

and the response to other treatments. By the time we arrived at the NIH though,

we knew he NEEDED, HAD TO HAVE treatment!!! YES indeed there were/are risks,

BIG ONES, but, we were watching him waste away. He couldn't eat a majority of

the time, because duing flares he doesn't eat very well, the reflux was awful,

also associated with types of genetic PFS, his joint pain in his legs, feet, and

hips was so bad, and so often that he just wasn't walking. Before we arrived at

the NIH we were considering getting a wheelchair. We did PT for a LONG

time...hot water therapy works WONDERS(for anyone reading this! I can provide

many exercises that are awesome)however,

when we maxed out our PT allowance, and were paying for it ourselves, plud meds

and studies, because we were constantly told it's not covered cause we don't

know what it is. FIGHT? You better believe it! I fought for his life!!!!!!!!

Anyway, there was a period of time that we fought to get a hot tub approved for

our home. They(The Insurance Co) called it a " LUXURY ITEM " and denied it

repeatedly! We finally used our thrid and final appeal and got lettes from an

Attorney, three Docs, a PT and OT....flatly denied! Luxury? Yea right! And

so...he just got worse. Fevers were MUCH higher before the NIH.....anywheer

from 105-107.9 and they'd last 3 straight days...he have a break for 3-5 days

and would fever again....of course, febrile seizures each time, joint pain,

belly cramping, later ulcers and bleeding ulcers from the naprosyn....the rash

was the clue that it was coming...each time bright red on his cheek.....we were

all over the country.Shriner's told u they couldn't

help us because of the treatment.ugh! We were at Children's in Phila. We were

just waiting for him to die-it was awful!!!!!!!!!! The more we paid for, the

more our savings dwindled, til there was NOTHING left!!! Can youi believe it?

In one year, we went from having it all, to having nothing.....but, we learned

during this time, that NOTHING else mattered. Am I rambling? They(Ins)wouldn't

even cover the Methotrexate through hershey due to the experimental nature of

the disease...because all of the genetic testing came back " inconclusive " or

negative. So....we were on and off Colchicine, used our share of Indocin-which

helped a great deal ith flares, but cause too many stomach issues....tons of

Prednisone-again, caused fevers to be too close, naprosyn for pain til the

ulcers. Finally when we arrived at the NIH we started Nino on Enbrel. We saw

improvement right away...still flares, just not as close....about every 2-3

weeks and not as severe....oh, he developed a

new symptom...toe nails breaking, pitting, splitting, etc....his feet got so

bad and painful...so back to the studies...Dr. Kastner and Dr. Baron tested him

for Fragile X, HyperIgD, Another FMF, and Mevalonic Kinase Deficiency

Disorder....again, nothing. Howeverm Dr. Kastner became very focused on trying

to keep in fever free/apin free longer periods of time...............at whatever

cost...............his labs are all over the place...you know the drill...sed

rate always elevated, even w/out flaring, which points them to think that the

inflammation continues, just less severe, because in between he still has aching

joints all the time. Same with belly issues....we then discovered the severe

colitis. Now it's mild, with the help of medication...again, much

needed..........Pentasa(Mesasalamine)-an anti inflammatory, Prevacid, Zantac,.

Then we had to switch because after abt 8 months on Enbrel, his flares started

coming every 2 weeks and were growing in intensity. Now,

he has been on Infliximab for over a year.....it has been wonderful! I know it

seems like he flares, but nothing like he did. AND, the height of the fevers

has never been affected with him, just the duration and frequency!

Unfortunately, in the last 4-6 months, the flares are returning more frequently

and in severity. So, that is why they'd like to add Methotrexate, which we've

used before for a short time and it gave him some relief. Together with the

infliximab, has been proven to help. Nino's Official diagnosis at the NIH is

" Inflammatory-Immune Disease. It is a Periodic Fever Syndrome, however, it's

not a classified into any of the known PFS's....there are so many yet to be

detected.....that's what they are hoping to find with Nino. He could not

function without meds, and I cannot wrap myself up in what to call this....I

refer to him as ahving PFS because he does, what type of PFS isn't important to

me right now, because we've been though all the testing, and

we try treatments that I trust Dr. Kastner will be most experienced with.

Atleast now Nino has more good days than bad, atleast now he plays and runs and

is a normal 7 year old for more days than not. Do I worry abt the possible side

effects? You betcha...but I have him today and he's at camp right now and smiled

at me this mornign and said I love you Mom when he got out of the

car...something we didn't think we'd ever have! These fevers SUCK. I hate

them...........but,Fran, they've taught me so much about life and love and

friends and family! Developing Lymphoma is a very REAL possibility while on

these toxic medications.....also liver and kidney function can become and issue,

but we had that w/out drugs.....so, atleast now we think we are giving him a

chance. We'll just keep doing what we have to do....the idea is that Nino's

immune sysytem doesn't have the ability to " shut off " . Listen folks, that is

the simple terminology for your friends....kids with PFS have

immune sysytems that don't shut down....so, in Nino's case, which is severe, so

please don't freak out anyone reading this.....we use chemo agents-immune

suppresant agents to shut it down for him.yes, it brings complications of it's

own. To us, and for Nino, it's worth the risk!

I ho[e this makes some kind of sense.

Fran, did I ever answer any of your questions??? Does any of this help??

Oh, one important thing, through testing, genetic structure mutations....it was

discovered that Nino's TNF is the problem.....this we now know for a fact,

that's why it's important to use the tnf inhibitor....undeerstand???

Ok....I shoudl end for now......I just wote a novel.....lol!

Fran, hope ph perks up soon-sorry it's a bad day!

Love and prayers Fran-you're the best!!!!

Lori

Fran Bulone <fbulone@...> wrote:

Hey Lori.

What genetic studies has Nino had? How long ago and has Kastner sent off for

the newer mutations?

Also what were Nino's fevers like before you started the Remicade and

Methotrexate??

What difference do you see with his fevers now? As I follow his story I see

he seems to still fever relatively high while on those medications. I am

wondering what his symptoms were prior to the medication.

ph still fevers every 3 weeks but the height has gone down from 107 to

104 and are much more manageable for me. He is sick right now and struggling

a little tonight. but he is heading to camp each day and I go and medicate

him during the day.

Kastner mentioned medicating with the same meds your little guy is on but I

refused. You are the only experienced Fever Mom that I have met that chose

to use the treatment and go back and forth to NIH. Please fill me in on the

benefits you are finding. My fears of Methotrexate having administered to

patients as a nurse are the effects it commonly had on the liver.

I would really appreciate more info first hand.

Fran A Bulone

Mom to ph 7 yrs old

Waxhaw, NC

Owner & Moderator Group

<>

[Guest guest]

LORI OR ANYONE

Does anyone know how I can go about do fundraising? How can I get

the community involved to know about PFS? Can anyone please give me

any advice?

Thanks

Sacora mom of nicolas 12

> Hey Lori.

>

> What genetic studies has Nino had? How long ago and has Kastner

sent off for

> the newer mutations?

>

> Also what were Nino's fevers like before you started the Remicade

and

> Methotrexate??

>

> What difference do you see with his fevers now? As I follow his

story I see

> he seems to still fever relatively high while on those

medications. I am

> wondering what his symptoms were prior to the medication.

>

> ph still fevers every 3 weeks but the height has gone down

from 107 to

> 104 and are much more manageable for me. He is sick right now and

struggling

> a little tonight. but he is heading to camp each day and I go and

medicate

> him during the day.

>

> Kastner mentioned medicating with the same meds your little guy is

on but I

> refused. You are the only experienced Fever Mom that I have met

that chose

> to use the treatment and go back and forth to NIH. Please fill me

in on the

> benefits you are finding. My fears of Methotrexate having

administered to

> patients as a nurse are the effects it commonly had on the liver.

>

> I would really appreciate more info first hand.

>

> Fran A Bulone

> Mom to ph 7 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

> <>

>

>

[Guest guest]

The Nino Fund-PSHMC is the only 501C3 registered " foundation " for PFS in the

country. You can always organize a fundraiser....without having a foundation.

You must keep very accirate records, be sure to apply all donations

appropriately, and sometimes people want reciepts for tax purposes, that's when

a 501C3 is necessary! Hope this helps. Please let me know if you need more

info...also, if you do a bake sale, basket bingo, etc....in your area, you can

filter it through The Nino Fund and Hershey Med provides wonderful

records/statements/receipts!

Love to you and your family Sacora!!

Lori

Sacora <sacoracasselman@...> wrote:

LORI OR ANYONE

Does anyone know how I can go about do fundraising? How can I get

the community involved to know about PFS? Can anyone please give me

any advice?

Thanks

Sacora mom of nicolas 12

> Hey Lori.

>

> What genetic studies has Nino had? How long ago and has Kastner

sent off for

> the newer mutations?

>

> Also what were Nino's fevers like before you started the Remicade

and

> Methotrexate??

>

> What difference do you see with his fevers now? As I follow his

story I see

> he seems to still fever relatively high while on those

medications. I am

> wondering what his symptoms were prior to the medication.

>

> ph still fevers every 3 weeks but the height has gone down

from 107 to

> 104 and are much more manageable for me. He is sick right now and

struggling

> a little tonight. but he is heading to camp each day and I go and

medicate

> him during the day.

>

> Kastner mentioned medicating with the same meds your little guy is

on but I

> refused. You are the only experienced Fever Mom that I have met

that chose

> to use the treatment and go back and forth to NIH. Please fill me

in on the

> benefits you are finding. My fears of Methotrexate having

administered to

> patients as a nurse are the effects it commonly had on the liver.

>

> I would really appreciate more info first hand.

>

> Fran A Bulone

> Mom to ph 7 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

> <>

>

>

[Guest guest]

Lori-

Can you please get me more all the information on the 501C3 cause I would like

to get the coast line here involved in all this and maybe we can get more people

involved to help this foundation and help everyone dealing with the PFS. So if

you could please send me information either by email or home address let me

know.

Thanks so much Lori.

Love to all of you

Lori Todaro <loritodaro@...> wrote:

The Nino Fund-PSHMC is the only 501C3 registered " foundation " for PFS

in the country. You can always organize a fundraiser....without having a

foundation. You must keep very accirate records, be sure to apply all donations

appropriately, and sometimes people want reciepts for tax purposes, that's when

a 501C3 is necessary! Hope this helps. Please let me know if you need more

info...also, if you do a bake sale, basket bingo, etc....in your area, you can

filter it through The Nino Fund and Hershey Med provides wonderful

records/statements/receipts!

Love to you and your family Sacora!!

Lori

Sacora <sacoracasselman@...> wrote:

LORI OR ANYONE

Does anyone know how I can go about do fundraising? How can I get

the community involved to know about PFS? Can anyone please give me

any advice?

Thanks

Sacora mom of nicolas 12

> Hey Lori.

>

> What genetic studies has Nino had? How long ago and has Kastner

sent off for

> the newer mutations?

>

> Also what were Nino's fevers like before you started the Remicade

and

> Methotrexate??

>

> What difference do you see with his fevers now? As I follow his

story I see

> he seems to still fever relatively high while on those

medications. I am

> wondering what his symptoms were prior to the medication.

>

> ph still fevers every 3 weeks but the height has gone down

from 107 to

> 104 and are much more manageable for me. He is sick right now and

struggling

> a little tonight. but he is heading to camp each day and I go and

medicate

> him during the day.

>

> Kastner mentioned medicating with the same meds your little guy is

on but I

> refused. You are the only experienced Fever Mom that I have met

that chose

> to use the treatment and go back and forth to NIH. Please fill me

in on the

> benefits you are finding. My fears of Methotrexate having

administered to

> patients as a nurse are the effects it commonly had on the liver.

>

> I would really appreciate more info first hand.

>

> Fran A Bulone

> Mom to ph 7 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

> <>

>

>

[Guest guest]

Sacora, are you wanting to help raise money for The Nino Fund-PSHMC, or are you

wanting to start your own foundation? If you are raising funds for The Nino

Fund, all checks need to be made payable to the Nino Fund-PSHMC. If it's a

collection of some sort, just put the cash into one acct and then make the check

payable to the fund.Also, if you are looking to organize an event, such as a

run, basket bingo, raffle of some sort, etc....THen, we have letter head, and

information such as request for donations that can be provided to you. The Nino

Fund Board, which I am Pres. Dr. Brandt Groh is Vice Pres, we have an attorney

who sits on the board handling finances, a Secretary and two ad-hoc

members....will have to approve a fund raising effort(whcih I am sure would not

be any problem!!). IF you are looking to begin a foundation yourslef....well,

you will need to get an attorney, unless you know someone who can help you, and

I recommend you get a local hospital or something

involved...It would be great to filter funds into one foundation which helps

families across the country with PFS...that is why I started The Nino

Fund-PSHMC.

Some families also do personal fundraisers.....I've herad of that

happening...if you need to raise money for travel to and from NIH....you can do

a fundraiser of any kind....

Good Luck!

Lori

Sacora Casselman <sacoracasselman@...> wrote:

Lori-

Can you please get me more all the information on the 501C3 cause I would like

to get the coast line here involved in all this and maybe we can get more people

involved to help this foundation and help everyone dealing with the PFS. So if

you could please send me information either by email or home address let me

know.

Thanks so much Lori.

Love to all of you

Lori Todaro <loritodaro@...> wrote:

The Nino Fund-PSHMC is the only 501C3 registered " foundation " for PFS in the

country. You can always organize a fundraiser....without having a foundation.

You must keep very accirate records, be sure to apply all donations

appropriately, and sometimes people want reciepts for tax purposes, that's when

a 501C3 is necessary! Hope this helps. Please let me know if you need more

info...also, if you do a bake sale, basket bingo, etc....in your area, you can

filter it through The Nino Fund and Hershey Med provides wonderful

records/statements/receipts!

Love to you and your family Sacora!!

Lori

Sacora <sacoracasselman@...> wrote:

LORI OR ANYONE

Does anyone know how I can go about do fundraising? How can I get

the community involved to know about PFS? Can anyone please give me

any advice?

Thanks

Sacora mom of nicolas 12

> Hey Lori.

>

> What genetic studies has Nino had? How long ago and has Kastner

sent off for

> the newer mutations?

>

> Also what were Nino's fevers like before you started the Remicade

and

> Methotrexate??

>

> What difference do you see with his fevers now? As I follow his

story I see

> he seems to still fever relatively high while on those

medications. I am

> wondering what his symptoms were prior to the medication.

>

> ph still fevers every 3 weeks but the height has gone down

from 107 to

> 104 and are much more manageable for me. He is sick right now and

struggling

> a little tonight. but he is heading to camp each day and I go and

medicate

> him during the day.

>

> Kastner mentioned medicating with the same meds your little guy is

on but I

> refused. You are the only experienced Fever Mom that I have met

that chose

> to use the treatment and go back and forth to NIH. Please fill me

in on the

> benefits you are finding. My fears of Methotrexate having

administered to

> patients as a nurse are the effects it commonly had on the liver.

>

> I would really appreciate more info first hand.

>

> Fran A Bulone

> Mom to ph 7 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

> <>

>

>

[Guest guest]

I think you can read about the gene test at celiac.com....you can also go to the

site gluten sensitivity online as well. The Gluten Connection (book) by Sher

iLeiiberman expins all about gluten sensitivity and the other gluten issues that

" science " hasn't explored yet. I have had the gene test and I am definitely not

Celiac. If you want to make a real diference inyour child's life, find a good

naturopath (recently trained)....www.naturopathic.org they are trained in

functional medicine and understand nutribiotics so you don't waste money on

ineffective solutions and things like iodine which may complicate the issue.

My root cause of my sensitivities and failure to thrive were never going to be

addressed by regular medicine.

There are many other food molecules that are like the gluten molecule and this

compounds the problem.

Joan

I did notice her growing more since she went gluten free. We are also soy free.

Even at church, they were surprised how much she grew over the summer. Her hair

is still thin. It grew a little more than what it had since going off of gluten,

but just very thin (unless that is just genetics - my husband has thinner hair -

just not that thin). The only reason I didn't test for Celiac was the expense

involved. Where is the DNA test done and do you have an idea how much it would

cost? I was diagnosed with a milk protein allergy as as little girl.

I certianly want to consider iodine for her as well.

Thanks Linn.

Lori

[Guest guest]

Joan,Just curious, why do you think that iodine would complicate the issue?LinnOn Feb 10, 2011, at 3:11 PM, stonebystone2 wrote:

I think you can read about the gene test at celiac.com....you can also go to the site gluten sensitivity online as well. The Gluten Connection (book) by Sher iLeiiberman expins all about gluten sensitivity and the other gluten issues that "science" hasn't explored yet. I have had the gene test and I am definitely not Celiac. If you want to make a real diference inyour child's life, find a good naturopath (recently trained)....www.naturopathic.org they are trained in functional medicine and understand nutribiotics so you don't waste money on ineffective solutions and things like iodine which may complicate the issue.

My root cause of my sensitivities and failure to thrive were never going to be addressed by regular medicine.

There are many other food molecules that are like the gluten molecule and this compounds the problem.

Joan

I did notice her growing more since she went gluten free. We are also soy free. Even at church, they were surprised how much she grew over the summer. Her hair is still thin. It grew a little more than what it had since going off of gluten, but just very thin (unless that is just genetics - my husband has thinner hair - just not that thin). The only reason I didn't test for Celiac was the expense involved. Where is the DNA test done and do you have an idea how much it would cost? I was diagnosed with a milk protein allergy as as little girl.

I certianly want to consider iodine for her as well.

Thanks Linn.

Lori