Channon is having an episode

[Guest guest]

I have talked a lot about my 2 year old, Zach, having his T & A and so

far having success with no episode since the surgery and now my 6

year old, Channon, is fevering with 103 and has an ulcer on his left

tonsil(tested negative for strep) along with stomach pain and severe

headache. Channon has not had anything like this for at least a

couple of years. I truly thought he was through the worst part. Even

though we are still in the process of doing the genetic testing for

TRAPS and HIDS, the diagnosis we were given by the ID was for

Zach and Channon. I have just read about the older children having

sinus problems and Channon has severe sinus infections with the

headaches too. I am not sure if this is a virus, sinus infection or

an episode but I am even more determined than ever to get a positive

diagnosis with the genetic testing. Thank you again Fran for the

information, my NP has started the ball rolling. Is there anyone else

that has had a big break (more than a year) and then started episodes

again? My NP asked if I would find out from some other parents. I am

also contacting our ENT that did Zachs surgery to see if Channon is a

candidate for a T & A. Thank you.

a

Molalla, OR.

Mom of Zach(2),Channon(6),Tyler(11)

[Guest guest]

My 13-year-old a had a year and a half episode-free when she was

around nine years old, which was right after we recieved her

diagnosis! We finally learned the cause of her fevers, and had a

plan of action, when they stopped! We really thought Pfapa was gone

for good. But it came back, and looking pretty different so that she

had maybe three episodes before we realized it was back.

She had her T & A Thursday and she is doing fine. We are praying this

is the REAL end of her fevers. I am afraid a will be devastated

if she gets an episode after all this.

But to put these fevers into perspective, when a was wheeled out

of recovery, she was groggy and tears were coursing down her cheeks.

I asked, " Does it hurt bad? " She slowly nodded, her bottom lip

pouted and quivering. Then I asked, " As bad as when you fever? " She

thought a minute and slowly shook her head.

Scary, huh?

> I have talked a lot about my 2 year old, Zach, having his T & A and

so

> far having success with no episode since the surgery and now my 6

> year old, Channon, is fevering with 103 and has an ulcer on his

left

> tonsil(tested negative for strep) along with stomach pain and

severe

> headache. Channon has not had anything like this for at least a

> couple of years. I truly thought he was through the worst part.

Even

> though we are still in the process of doing the genetic testing for

> TRAPS and HIDS, the diagnosis we were given by the ID was for

> Zach and Channon. I have just read about the older children having

> sinus problems and Channon has severe sinus infections with the

> headaches too. I am not sure if this is a virus, sinus infection or

> an episode but I am even more determined than ever to get a

positive

> diagnosis with the genetic testing. Thank you again Fran for the

> information, my NP has started the ball rolling. Is there anyone

else

> that has had a big break (more than a year) and then started

episodes

> again? My NP asked if I would find out from some other parents. I

am

> also contacting our ENT that did Zachs surgery to see if Channon is

a

> candidate for a T & A. Thank you.

> a

> Molalla, OR.

> Mom of Zach(2),Channon(6),Tyler(11)

[Guest guest]

My 13-year-old a had a year and a half episode-free when she was

around nine years old, which was right after we recieved her

diagnosis! We finally learned the cause of her fevers, and had a

plan of action, when they stopped! We really thought Pfapa was gone

for good. But it came back, and looking pretty different so that she

had maybe three episodes before we realized it was back.

She had her T & A Thursday and she is doing fine. We are praying this

is the REAL end of her fevers. I am afraid a will be devastated

if she gets an episode after all this.

But to put these fevers into perspective, when a was wheeled out

of recovery, she was groggy and tears were coursing down her cheeks.

I asked, " Does it hurt bad? " She slowly nodded, her bottom lip

pouted and quivering. Then I asked, " As bad as when you fever? " She

thought a minute and slowly shook her head.

Scary, huh?

> I have talked a lot about my 2 year old, Zach, having his T & A and

so

> far having success with no episode since the surgery and now my 6

> year old, Channon, is fevering with 103 and has an ulcer on his

left

> tonsil(tested negative for strep) along with stomach pain and

severe

> headache. Channon has not had anything like this for at least a

> couple of years. I truly thought he was through the worst part.

Even

> though we are still in the process of doing the genetic testing for

> TRAPS and HIDS, the diagnosis we were given by the ID was for

> Zach and Channon. I have just read about the older children having

> sinus problems and Channon has severe sinus infections with the

> headaches too. I am not sure if this is a virus, sinus infection or

> an episode but I am even more determined than ever to get a

positive

> diagnosis with the genetic testing. Thank you again Fran for the

> information, my NP has started the ball rolling. Is there anyone

else

> that has had a big break (more than a year) and then started

episodes

> again? My NP asked if I would find out from some other parents. I

am

> also contacting our ENT that did Zachs surgery to see if Channon is

a

> candidate for a T & A. Thank you.

> a

> Molalla, OR.

> Mom of Zach(2),Channon(6),Tyler(11)

[Guest guest]

Wow, that is pretty scary. My 2 year old was the same way after his T & A. He

ate a pretzel when he came home from the hospital. So, even though he couldn't

verbalize the comparison, I knew it must not be as bad because during his

episodes he doesn't even eat ice cream. Puts it in perspective, huh? Thank you

for

responding and I will pray for you too that the T & A works and NO MORE FEVERS!

Love and prayers,

a Molalla, OR

Mom of Zach(2), Channon(6), Tyler(11)

[Guest guest]

Wow, that is pretty scary. My 2 year old was the same way after his T & A. He

ate a pretzel when he came home from the hospital. So, even though he couldn't

verbalize the comparison, I knew it must not be as bad because during his

episodes he doesn't even eat ice cream. Puts it in perspective, huh? Thank you

for

responding and I will pray for you too that the T & A works and NO MORE FEVERS!

Love and prayers,

a Molalla, OR

Mom of Zach(2), Channon(6), Tyler(11)