Re: upstate ny ideas please or advice

[Guest guest]

Hi Amber,

I've been reading a lot lately about the different periodic fever syndromes.

If your child has puffy eyes that is one of the symptoms for TRAPS. If you

haven't already, you should have your child tested for all of the genetic

periodic fevers. should be tested for TRAPS, HIDS, and FMF. This can

be done through GeneDx, a commerical lab who tests for these fevers. The

information is under the files in this group. Ask your primary care or

specialist about these tests.

Good luck and let us know what happens.

Beverly

Roseville, CA

Mom to Nick (10), Shane (7) and Madalyn (5)

upstate ny ideas please or advice

>

>

> Does anyone live near upstate NY?? All the doctors I have taken my

> son to have given up? First they thought it was syndrome

> but he follows no pattern. We took him to an infectious disease

> specialist at University Hospital in Syracuse they said he may have

> this or it could be viral fevers?? It so fustrating!! Hes 5 hes so

> far had two episodes of fevers this month alone. But no answers. Had

> a total of 9 fevers this years no explination. His fevers last approx

> 4 days with headaches some throat irratation and always puffy eyes.

> Motrin only lasts 3 to 4 hrs they the fever increases. I feel

> helpless I can not even comfort him with tylenol it does not work hes

> taken advil and motrin so much it doesn't even work as long as it

> should! Does anyone have any suggestions???? He has an appt to see

> an ENT thats what my primary care Doctor recommended because he knows

> I am not happy with the answers I am getting. Any one have any

> ideas??? Thanks

>

> Amber McRae

> Oswego,NY

> son 5 yrs old

>

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>

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>

[Guest guest]

Beverly,

Thanks for the advice I will look into these things!

I appreciate anything right now. Its just so fustrating to watch him

suffer with these fevers. Hes my youngest 5 the other two are 11 and 8

and have none of these problems. Thanks I did read some of the

material to help understand about these other possibilities.

Amber

Oswego,NY

5 yrs old

> Hi Amber,

>

> I've been reading a lot lately about the different periodic fever

syndromes.

> If your child has puffy eyes that is one of the symptoms for TRAPS.

If you

> haven't already, you should have your child tested for all of the

genetic

> periodic fevers. should be tested for TRAPS, HIDS, and FMF.

This can

> be done through GeneDx, a commerical lab who tests for these fevers.

The

> information is under the files in this group. Ask your primary care or

> specialist about these tests.

>

> Good luck and let us know what happens.

>

> Beverly

> Roseville, CA

> Mom to Nick (10), Shane (7) and Madalyn (5)

> upstate ny ideas please or advice

>

>

> >

> >

> > Does anyone live near upstate NY?? All the doctors I have taken my

> > son to have given up? First they thought it was syndrome

> > but he follows no pattern. We took him to an infectious disease

> > specialist at University Hospital in Syracuse they said he may have

> > this or it could be viral fevers?? It so fustrating!! Hes 5 hes so

> > far had two episodes of fevers this month alone. But no answers. Had

> > a total of 9 fevers this years no explination. His fevers last approx

> > 4 days with headaches some throat irratation and always puffy eyes.

> > Motrin only lasts 3 to 4 hrs they the fever increases. I feel

> > helpless I can not even comfort him with tylenol it does not work hes

> > taken advil and motrin so much it doesn't even work as long as it

> > should! Does anyone have any suggestions???? He has an appt to see

> > an ENT thats what my primary care Doctor recommended because he knows

> > I am not happy with the answers I am getting. Any one have any

> > ideas??? Thanks

> >

> > Amber McRae

> > Oswego,NY

> > son 5 yrs old

> >

> >

> >

> >

> >

> >

> >

> >