Re: New to group-- Mayo Clinic?

[Guest guest]

Hi Kathy,

I would be interested in this response too. Where are you located?

We live in Brookings, SD and the ID doc we were seeing in Sioux

Falls is no longer there so we are considering where to go next.

Anyone else from this region (SD/ND/MN/IA)?

Jenna

Our son, Ian (3yrs) has had recurring fevers since April.

[Guest guest]

Hi

We took my daughter there to Mayo in November for a T & A. They were

wonderful. The ENT knew quite a bit about . Where are you from? We live

about

100 miles away.

[Guest guest]

Hi Jenna,

We are from Southern Iowa and go to Blank Children's Hospital to Dr.

Elliott. He is a

hemotalogist and has done wonderful with our son.

>

> Hi Kathy,

>

> I would be interested in this response too. Where are you located?

> We live in Brookings, SD and the ID doc we were seeing in Sioux

> Falls is no longer there so we are considering where to go next.

> Anyone else from this region (SD/ND/MN/IA)?

>

>

>

> Jenna

> Our son, Ian (3yrs) has had recurring fevers since April.

>

[Guest guest]

HI Jenna,

My name is and we live in Beaver Creek MN. My daughter is 4yrs

old and has had recurring fevers since she was about 6 months old. She had seen

Dr. Ansari in Sioux Falls, but we are getting a second opinion from the Mayo

clinic. We need to send a condensed file on her. We will be setting something

up for her in the beginning of 2007. She has been doing better with the fevers.

She hasnt had one since October, but she also has had problems with her ears for

the last 6 weeks. Dr. Ansari just diagnosed her with without taking any

further tests. That is why we are taking her to Mayo.

Good Luck and God Bless.

@...: jlundgren45@...: Tue, 12 Dec 2006

21:15:11 +0000Subject: Re: New to group-- Mayo Clinic?

Hi Kathy,I would be interested in this response too. Where are you located? We

live in Brookings, SD and the ID doc we were seeing in Sioux Falls is no longer

there so we are considering where to go next. Anyone else from this region

(SD/ND/MN/IA)? JennaOur son, Ian (3yrs) has had recurring fevers since April.

[Guest guest]

We live in St. and are really hoping our insurance allows us to

go there for a second opinion.

Kathy

>

> Hi

> We took my daughter there to Mayo in November for a T & A. They were

> wonderful. The ENT knew quite a bit about . Where are you from?

We live about

> 100 miles away.

>

>

>

[Guest guest]

Hi Kathy, we are from Fargo, ND, and we are fortunate to have a great

Pediatrician that is well versed in , but, we did take our son to May

Clinic for other issues he had when he was littler. The Dr.'s at Mayo seem so

well informed with everything, I would think you would have great luck going

there. It is an amazing place. We were so suprised how organized and well

handled the place is. We too have thought about going that way for our sons

Pfapa, but he seems to be holding his own. Prednisone works well for him, so we

are just trying to ride it out for awhile and see what happens. He's 8 and has

been fevering since he was about 2 1/2. He tolerates episodes as well as can be

expected and now his episodes are usually 28 - 32 days aparts. For awhile they

were at 14 days, but fortunate for him, the time in between has gotten further.

If you have any concerns, I would try to get in there.

Patti mother of Brady 8

Draeger <Draeg001@...> wrote:

Hello all,

My name is Kathy and our son Jens has been diagnosed with . At

about 18 months he began having fevers every other week. Our

pediatrician treated him for ear infections, viruses, sent us to ENT,

had tubes put in his ears, had him stay home and " rest " for two weeks,

etc... We were told to have his tonsils out when he was just 2 years

old and I said " no more surgical treatments until we find out what is

behind all of these periodic fevers! "

He is now 30 months old and had a three months without fever from July

to October 2006 due to cimedine. The fevers, however, have now come

back with a vengeance-- every 10-12 days and lasting for nearly 5 days.

He does respond to the one dose prednisone, but we were told to use it

conservatively.

Has anyone taken their kids to the Mayo Clinic in Rochester for

evaluation? It is close to us and there are world renowned in other

areas of health care. I just don't know if they work on .

Kathy

__________________________________________________

[Guest guest]

Hi Patti

Do you know anyone to contact at the Mayo Clinic? Do

they did with PFS? Do you have numbers and names for

the Mayo clinic?

Thanks

Sacora mom of Nicolas 13 PFS

--- Patti Preston <prestonpatti@...> wrote:

> Hi Kathy, we are from Fargo, ND, and we are

> fortunate to have a great Pediatrician that is well

> versed in , but, we did take our son to May

> Clinic for other issues he had when he was littler.

> The Dr.'s at Mayo seem so well informed with

> everything, I would think you would have great luck

> going there. It is an amazing place. We were so

> suprised how organized and well handled the place

> is. We too have thought about going that way for our

> sons Pfapa, but he seems to be holding his own.

> Prednisone works well for him, so we are just trying

> to ride it out for awhile and see what happens. He's

> 8 and has been fevering since he was about 2 1/2. He

> tolerates episodes as well as can be expected and

> now his episodes are usually 28 - 32 days aparts.

> For awhile they were at 14 days, but fortunate for

> him, the time in between has gotten further. If you

> have any concerns, I would try to get in there.

>

> Patti mother of Brady 8

>

> Draeger <Draeg001@...> wrote:

> Hello all,

>

> My name is Kathy and our son Jens has been diagnosed

> with . At

> about 18 months he began having fevers every other

> week. Our

> pediatrician treated him for ear infections,

> viruses, sent us to ENT,

> had tubes put in his ears, had him stay home and

> " rest " for two weeks,

> etc... We were told to have his tonsils out when he

> was just 2 years

> old and I said " no more surgical treatments until we

> find out what is

> behind all of these periodic fevers! "

>

> He is now 30 months old and had a three months

> without fever from July

> to October 2006 due to cimedine. The fevers,

> however, have now come

> back with a vengeance-- every 10-12 days and lasting

> for nearly 5 days.

> He does respond to the one dose prednisone, but we

> were told to use it

> conservatively.

>

> Has anyone taken their kids to the Mayo Clinic in

> Rochester for

> evaluation? It is close to us and there are world

> renowned in other

> areas of health care. I just don't know if they work

> on .

>

> Kathy

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Sacora .. no answers from the NIH?

Kiara is on Enbrel shots and the docs here are scared that it will just mask

what is truely going on.

I honestly can say i am giving it a shot. its worth it.

vAnessa mom to kiara 6

[Guest guest]

Hi

No they are stumped to both me and Nicolas at this point he is not responding

to any of the medications that they have put him on. He is getting sick more and

more frequent and more and more severe. I am very frustrated cause it is both of

us and no one has any idea at this point. I took him into a Naturalpathic doctor

yesterday cause he is so wiped out not even being himself anymore, and they

brought up a few things that no doctor has ever said UGH UGH. I want answers and

now my son is not himself and it scares me so bad. I have been sick with one

infection to another all the time anymore and my t cell, lymphocytes, are all

elevating and my nk cells are low. It just strang and Nick is the opisite of me

he is low on the t cell, high on the IgE and some of the allergic and

inflammatory markers. What did they say about Kiara? Do they think it is

leukemia or something like that? What did the bone scan, and bone marrow test

come out?

Sacora

Bisson <proudmom@...> wrote:

Sacora .. no answers from the NIH?

Kiara is on Enbrel shots and the docs here are scared that it will just mask

what is truely going on.

I honestly can say i am giving it a shot. its worth it.

vAnessa mom to kiara 6

[Guest guest]

They really dont know but are treating with Enbrel right now as if she has

TRAPS and familial cold. i am s o frustrated as its taking forever for answers

lol. SHe is also being looked at for Mccuen albright syndrome. Which makes it

even more frustrating.

I dont have doctor support up here. I am all alone on this .. ohe well

Re: New to group-- Mayo Clinic?

Hi

No they are stumped to both me and Nicolas at this point he is not responding

to any of the medications that they have put him on. He is getting sick more and

more frequent and more and more severe. I am very frustrated cause it is both of

us and no one has any idea at this point. I took him into a Naturalpathic doctor

yesterday cause he is so wiped out not even being himself anymore, and they

brought up a few things that no doctor has ever said UGH UGH. I want answers and

now my son is not himself and it scares me so bad. I have been sick with one

infection to another all the time anymore and my t cell, lymphocytes, are all

elevating and my nk cells are low. It just strang and Nick is the opisite of me

he is low on the t cell, high on the IgE and some of the allergic and

inflammatory markers. What did they say about Kiara? Do they think it is

leukemia or something like that? What did the bone scan, and bone marrow test

come out?

Sacora

Bisson <proudmom@...> wrote:

Sacora .. no answers from the NIH?

Kiara is on Enbrel shots and the docs here are scared that it will just mask

what is truely going on.

I honestly can say i am giving it a shot. its worth it.

vAnessa mom to kiara 6

[Guest guest]

Sorry..... kind of slow getting back to you... Christmas was just a little

crazy. When we went to the Mayo clinic, we had a referral from our pediatrician,

and then all the scheduling was done from there. That being said though, I do

have a number to the Mayo Clinic in Rochester, MN. It is 507-284-2511..... Good

luck,

Patti mother of Brady

Sacora Casselman <sacoracasselman@...> wrote:

Hi Patti

Do you know anyone to contact at the Mayo Clinic? Do

they did with PFS? Do you have numbers and names for

the Mayo clinic?

Thanks

Sacora mom of Nicolas 13 PFS

--- Patti Preston <prestonpatti@...> wrote:

> Hi Kathy, we are from Fargo, ND, and we are

> fortunate to have a great Pediatrician that is well

> versed in , but, we did take our son to May

> Clinic for other issues he had when he was littler.

> The Dr.'s at Mayo seem so well informed with

> everything, I would think you would have great luck

> going there. It is an amazing place. We were so

> suprised how organized and well handled the place

> is. We too have thought about going that way for our

> sons Pfapa, but he seems to be holding his own.

> Prednisone works well for him, so we are just trying

> to ride it out for awhile and see what happens. He's

> 8 and has been fevering since he was about 2 1/2. He

> tolerates episodes as well as can be expected and

> now his episodes are usually 28 - 32 days aparts.

> For awhile they were at 14 days, but fortunate for

> him, the time in between has gotten further. If you

> have any concerns, I would try to get in there.

>

> Patti mother of Brady 8

>

> Draeger <Draeg001@...> wrote:

> Hello all,

>

> My name is Kathy and our son Jens has been diagnosed

> with . At

> about 18 months he began having fevers every other

> week. Our

> pediatrician treated him for ear infections,

> viruses, sent us to ENT,

> had tubes put in his ears, had him stay home and

> " rest " for two weeks,

> etc... We were told to have his tonsils out when he

> was just 2 years

> old and I said " no more surgical treatments until we

> find out what is

> behind all of these periodic fevers! "

>

> He is now 30 months old and had a three months

> without fever from July

> to October 2006 due to cimedine. The fevers,

> however, have now come

> back with a vengeance-- every 10-12 days and lasting

> for nearly 5 days.

> He does respond to the one dose prednisone, but we

> were told to use it

> conservatively.

>

> Has anyone taken their kids to the Mayo Clinic in

> Rochester for

> evaluation? It is close to us and there are world

> renowned in other

> areas of health care. I just don't know if they work

> on .

>

> Kathy

>

>

>

>

>

> __________________________________________________

>