Help for children with periodic fevers in Europe/Sweden/Finland?

October 4, 2006

Hi all,

I have been a member of this posting list for almost a year and have

received a lot of useful information and comfort from other parents,

who have children with these awful fevers. Many thanks to you all!

Have you any idea of how I could get hold of experts/physicians

knowing about /TRAPS/FMF etc. here in Europe or Scandinavia? We

live in Finland and at the local Children's Hospital the infectious

disease doctor knows something about these syndroms, but apparently

they also very easily rely on the diagnosis without thorough

testing of the child.

Our son has had (?) for one year now, with very high fevers

once a month, very sick appearance, very lethargic, not responding,

severe headache, stomache ache, very sore throat (without anything

found), not eating, very black around eyes etc. CRP is always over

200 (should be under 10 as we use to count here in Europe) and no

antibiotics have ever worked for the fevering. We tried dexametason

(cortisone), it lowered the fever, but the fever came back even

faster and the periods in between shortened a lot. As our son has

been so very, very ill when fevering, we decided to go through

toncillectomy in June. That was a big operation, but everything went

very well and now our son has not had any fevers after that. However

he has had stomach ache and head ache, some aching in his legs, too,

and those black ring around his eyes each time the fever " should have

come " .

I am glad that the fever has been gone now for three months, but I am

a little worried that the fevers will come back some day. Hopefully

not of course! That is why I ask if it would be possible to get some

information via NIH or do you Fran know any specialists on Fever

syndromes here in Europe/Finland/Sweden if needed? We are ready to

travel, but I think it is a little bit too far to travel to the U.S.

even if we could meet the best doctors there

Many thanks for your kind help and all the best for future!

Kind regards,

nne (with SLE=lupus) and Victor, 4 years old (with (?),

asthma, dyspraxia)

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