NEW ID Doc

[Guest guest]

Hi everyone,

I post from time to time, but read often. Just wanted to update that

my son, Hieser, saw a new ID doc yesterday, and I can't say that I

liked her anymore than the doc's at UCSF. Like TammieLee just posted

she actually did give him a diagnosis of (unlike the UCSF docs

who just blew me off), but just said it was a benign disease that

children grow out of without any long term effects. She also said

that since his fevers have been somewhat more sporatic it meant he

was already growing out of it. Oddly enough he had a fever in June

and one this week which was the closest they had ever come together -

the one he just got over was much more mild than usual only topping

out at about 102.5. Anyways, she is testing him for HIDs, and she

took a healthy blood test. She wants me to bring him next time he is

sick, but pretty much said that she didn't approve of treating these

children with any medicine unless they are fevering all the time. I

am fortunate that lately it has been every 6 - 8 weeks.

She also said that she pretty much ruled out FMF (he had a negative

test) because he didn't have more severe stomach issues.

So, that is where we are for now. On another note my new little girl

seems to get all the things my son never got. She makes me feel like

a new mom. Odd how the kids get sick so infrequently (besides

the fevers).

Take care,

Mom to Hieser (2y 9 months) SF

[Guest guest]

Hi ,

May I ask where you are taking your son now? My

daughter just turned 3 and was diagnosed with

nearly a year ago by the ID docs at Oakland Children's

Hospital (she has an apt. there on Friday). I had

thought about taking her to UCSF for a second opinion

and was surprised to hear your experience with them.

I was also thinking about Stanford - another member of

this group had mentioned that they were happy with

their docs there. Anyway, it might be interesting to

compare notes sometime.

Hope your son is well.

Best regards,

Mom to (5) and Audrey (3 )

--- <hiesersmom@...> wrote:

> Hi everyone,

>

> I post from time to time, but read often. Just

> wanted to update that

> my son, Hieser, saw a new ID doc yesterday, and I

> can't say that I

> liked her anymore than the doc's at UCSF. Like

> TammieLee just posted

> she actually did give him a diagnosis of

> (unlike the UCSF docs

> who just blew me off), but just said it was a benign

> disease that

> children grow out of without any long term effects.

> She also said

> that since his fevers have been somewhat more

> sporatic it meant he

> was already growing out of it. Oddly enough he had

> a fever in June

> and one this week which was the closest they had

> ever come together -

> the one he just got over was much more mild than

> usual only topping

> out at about 102.5. Anyways, she is testing him for

> HIDs, and she

> took a healthy blood test. She wants me to bring

> him next time he is

> sick, but pretty much said that she didn't approve

> of treating these

> children with any medicine unless they are fevering

> all the time. I

> am fortunate that lately it has been every 6 - 8

> weeks.

>

> She also said that she pretty much ruled out FMF (he

> had a negative

> test) because he didn't have more severe stomach

> issues.

>

> So, that is where we are for now. On another note

> my new little girl

> seems to get all the things my son never got. She

> makes me feel like

> a new mom. Odd how the kids get sick so

> infrequently (besides

> the fevers).

>

> Take care,

>

>

> Mom to Hieser (2y 9 months) SF

>

>

>

>

__________________________________________________

[Guest guest]

Hi ,

Nice to hear from someone in the area - hope you and your daughter are well

with this heat.

Currently we got to CPMC (sutter health) for his regular Pedi. I really love

them, and they do a great job, but they always said the same thing you always

hear....virus. I realized it was just out of their league and took my son to

UCSF. I work for UCSF and know that they have a rating in the top 10 nationally

for the Medical Center, but I left there frustrated none the less. They were

however willing to work with me, and they did do genetic testing. What made

them skeptical about my son was that they said he had other things going on with

some of his fevers so they could not really say it was solely a fever episode.

He had an ear infection with one that needed to be treated with antibiotic

shots, but he didn't get his fever until he had the ear infection for two weeks.

The highest his fever got with the infection was 101 so I know it was an episode

with it spiked on a Monday night between 4-6 to 105. Then he also had a fever

blister with one so they said the

fever could be because of that...

Anyways, once the genetic tests came back negative they said I should keep in

touch - my sons fevers subsided for four months, but are now back. I called

them back to see if there was another course of action and the resident called

me back to tell me that they didn't think he had a problem and that some kids

just get sick a lot. I was horrified, and so angry. I still think about

calling them back all the time just to tell them off.

The new ID doc at CPMC was okay, but too rushed. She didn't really give me

any treatment options, but did test for some things UCSF didn't. She wants to

see him back when he gets his next fever, but said it was a benign disorder and

really not something to worry about. So I wasn't too excited about her either.

I have talked often to am who has taken her daughter to Stanford, and she

really likes the doctors there. I have also heard other good things about

Oaklands Children Hosp. So, I think you are on the right track.

I wouldn't rule out UCSF though just on my opinion. They do have some of the

best doctor's in the world, and maybe I am too paranoid about my son - and mabye

they are right. My son is not as severe as some of the children here. He only

gets fevers every six - eight weeks. The one doc at UCSF did say she was

treating a child with clinical FMF.

Hope this helps, and good luck to you.

Henry <heatherp_87@...> wrote:

Hi ,

May I ask where you are taking your son now? My

daughter just turned 3 and was diagnosed with

nearly a year ago by the ID docs at Oakland Children's

Hospital (she has an apt. there on Friday). I had

thought about taking her to UCSF for a second opinion

and was surprised to hear your experience with them.

I was also thinking about Stanford - another member of

this group had mentioned that they were happy with

their docs there. Anyway, it might be interesting to

compare notes sometime.

Hope your son is well.

Best regards,

Mom to (5) and Audrey (3 )

--- <hiesersmom@...> wrote:

> Hi everyone,

>

> I post from time to time, but read often. Just

> wanted to update that

> my son, Hieser, saw a new ID doc yesterday, and I

> can't say that I

> liked her anymore than the doc's at UCSF. Like

> TammieLee just posted

> she actually did give him a diagnosis of

> (unlike the UCSF docs

> who just blew me off), but just said it was a benign

> disease that

> children grow out of without any long term effects.

> She also said

> that since his fevers have been somewhat more

> sporatic it meant he

> was already growing out of it. Oddly enough he had

> a fever in June

> and one this week which was the closest they had

> ever come together -

> the one he just got over was much more mild than

> usual only topping

> out at about 102.5. Anyways, she is testing him for

> HIDs, and she

> took a healthy blood test. She wants me to bring

> him next time he is

> sick, but pretty much said that she didn't approve

> of treating these

> children with any medicine unless they are fevering

> all the time. I

> am fortunate that lately it has been every 6 - 8

> weeks.

>

> She also said that she pretty much ruled out FMF (he

> had a negative

> test) because he didn't have more severe stomach

> issues.

>

> So, that is where we are for now. On another note

> my new little girl

> seems to get all the things my son never got. She

> makes me feel like

> a new mom. Odd how the kids get sick so

> infrequently (besides

> the fevers).

>

> Take care,

>

>

> Mom to Hieser (2y 9 months) SF

>

>

>

>

__________________________________________________