Re: Question to Fran or anyone?

[Guest guest]

Just wondering if they did any x-rays of his chest to rule out things

like pneumonia or asthma? My son and daughter both have asthma and I

know one time Amber's throat starting closing up on her ... that's when

her asthma was way out of control. Did they prescribe any steroids for

the swelling? I remember she had to be on oral steroids for over a

week that time. She was not wheezing or coughing at all when this

happened ... more or less just started swelling shut on the inside.

Just a thought ...

She and Mason both complained of back pain, when they had pneumonia

too. Although they've also complained of back pain when their asthma

has been bad.

What did they do for your son?

Heidi

[Guest guest]

Sacora,

It sounds like pharyngitis and tonsilitis. Did they not tell you that?

If a child's throat was closing they would do a trach so he could

breath? Clarify.

We are at the NIH.

I ran it by the docs here... did not mention names and they said the

same thing.

Sore throat.

Fran

Fran A Bulone

Mom to ph 6 yrs old NOMID

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hi heidi,

Well the ER prescribed a antibodic, and tylonel with codien for him.

I took him to his id doctor cause his throat has been killing him

still she gave a steriods. I hate going in to the ER cause they just

don't get the complicating things with Nicolas,they look at me like i

am stupid or something.They did a ex just on his throat and nothing

else, i even asked if he could have the same esophagus issues as me

and they said well i doubt it, it is just more work for them. You

head soon back to the NIH, I cant wait to head back and figure things

out.

take care heidi

>

> Just wondering if they did any x-rays of his chest to rule out

things

> like pneumonia or asthma? My son and daughter both have asthma and

I

> know one time Amber's throat starting closing up on her ... that's

when

> her asthma was way out of control. Did they prescribe any steroids

for

> the swelling? I remember she had to be on oral steroids for over a

> week that time. She was not wheezing or coughing at all when this

> happened ... more or less just started swelling shut on the

inside.

> Just a thought ...

>

> She and Mason both complained of back pain, when they had pneumonia

> too. Although they've also complained of back pain when their

asthma

> has been bad.

>

> What did they do for your son?

>

> Heidi

>

[Guest guest]

-I wish i was there so I could meet you and ph. How are things

going with ph? They said it could be strep but the culture was

negative. He is still running a fever, glands swollen, headache and

very fatigued. By the time I got him in there he was gasping for air

then, we gave him a puff of inhalers and that helped too. How long

are you there? Thanks for checking with them Fran. I wish i could of

met you.

thanks for replying my prayers are with you and ph

-- In , fbulone@... wrote:

>

> Sacora,

>

> It sounds like pharyngitis and tonsilitis. Did they not tell you

that?

> If a child's throat was closing they would do a trach so he could

> breath? Clarify.

>

> We are at the NIH.

> I ran it by the docs here... did not mention names and they said

the

> same thing.

> Sore throat.

> Fran

>

> Fran A Bulone

> Mom to ph 6 yrs old NOMID

> Waxhaw, NC

> Owner & Moderator Group

>

>

[Guest guest]

Sacora,

I hope he is feeling better soon. Sounds like a combo of breathing

issues, if they used inhalers and it worked as well as a bad

pharyngitis (sore throat)

Today is Wed and we are off to the eye clinic to check on ph's

cornea's which were both inflamed when we were here in March.

Then we are done with NIH until NEXT summer!! I think yearly checks of

his Immune function and the other lab studies are enough at this point

unless he gets " worse " ... I have accepted his diagnosis of Periodic

Fever Syndrome of unknown etiology until they locate more genetic

markers... and that could be in a year or in 10 yrs. I will treat his

symtpoms and allow him to live as normal of a like as possible. He is

better now than he was when he was an infant and toddler. Easier to

deal with a child vs an infant. My heart goes out to those who are

still dealing with a young infant and toddler. Now at least ph

understands why he must drink and take medicine. And I am blessed with

a young child who loves life and is outgoing so the fevers and other

symptoms do not over take our lives.

Hope all is getting better for you.

Fran

Fran A Bulone

Mom to ph 6 yrs old NOMID

Waxhaw, NC

Owner & Moderator Group