Re: introduction: Amber & Wyatt

[Guest guest]

Amber,

I can feel your pain. We have a 5 yr old boy who has had all the

symptoms since be was an infant. We were always told it was just a

virus. We can predict the exact days he will be sick every month. He

has high fever, vomiting, mouth ulcers and terrible tonsils every

time. At one point a specialist diagnosed him with Medeteranian

Fever which turned out to be a wrong diagnosis (after extensive

genetic testing). What we found interesting was that when we moved

from NY to SC his symptoms just went away for almost a year. At that

point we thought maybe his illness was due to something

environmental. Unfortunaly after almost a year fever free from age 3-

4 his symptoms returned. He has been seen by every specialist and had

tons of blood work done and everything turns out fine. We still hear

that it's " just a virus " . A few months ago by fluke we saw a

different pediatrician durning one of his episodes. He was the one

who suggested . He said it was not common at all and not many

doctors are framiliar with it. We have hope now that we are on the

right track. This website is wonderful. I was able to read messages

from other people who have kids going through exactly what he was

going through. Before I found this we felt so alone - like we were

the only one's in the world who had a kid that gets sick like this.

We are going to see a ENT in a few weeks to dicuss with him.

So what I can suggest to you is just hang in there. Record every time

he gets sick. Even if you don't bring him into the doctor call them

and let them know he is ill. This way they have it recorded and

don't think you're exaggerating when you say he always gets sick.

Eventually you will find the doctor that can help you. It also helps

that you know about so you can go into the specialist and ask

specifically about it.

[Guest guest]

Amber,

I can feel your pain. We have a 5 yr old boy who has had all the

symptoms since be was an infant. We were always told it was just a

virus. We can predict the exact days he will be sick every month. He

has high fever, vomiting, mouth ulcers and terrible tonsils every

time. At one point a specialist diagnosed him with Medeteranian

Fever which turned out to be a wrong diagnosis (after extensive

genetic testing). What we found interesting was that when we moved

from NY to SC his symptoms just went away for almost a year. At that

point we thought maybe his illness was due to something

environmental. Unfortunaly after almost a year fever free from age 3-

4 his symptoms returned. He has been seen by every specialist and had

tons of blood work done and everything turns out fine. We still hear

that it's " just a virus " . A few months ago by fluke we saw a

different pediatrician durning one of his episodes. He was the one

who suggested . He said it was not common at all and not many

doctors are framiliar with it. We have hope now that we are on the

right track. This website is wonderful. I was able to read messages

from other people who have kids going through exactly what he was

going through. Before I found this we felt so alone - like we were

the only one's in the world who had a kid that gets sick like this.

We are going to see a ENT in a few weeks to dicuss with him.

So what I can suggest to you is just hang in there. Record every time

he gets sick. Even if you don't bring him into the doctor call them

and let them know he is ill. This way they have it recorded and

don't think you're exaggerating when you say he always gets sick.

Eventually you will find the doctor that can help you. It also helps

that you know about so you can go into the specialist and ask

specifically about it.

[Guest guest]

Amber,  If you think your son has Pfapa,  I would talk to his pediatrician asap

about taking him to an infectious

diaseses doctor and a ENT doctor.  They seem to know more about this disease. 

good luck.

Killelea.  mother of jackson who is 7 and has had Pfapa for two years now.