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FAQs of Infantile Cortical Hyperostosis
1. How will I know if my children will be affected with Infantile Cortical Hyperostosis?
With advanced genetic techniques, it is possible to predict if your child will be affected by any genetic condition. But since Infantile Cortical Hyperostosis is a condition of unknown cause, genetic mapping is not always the answer. This together with the fact that the disease is mild and does not pose a threat to life makes this process irrelevant.
2. Which doctor should I see in case my child has several soft tissue swellings?
A pediatrician, orthopedic specialist or a dental surgeon are the doctors who will be able to diagnose and offer further advice about this condition
With advanced genetic techniques, it is possible to predict if your child will be affected by any genetic condition. But since Infantile Cortical Hyperostosis is a condition of unknown cause, genetic mapping is not always the answer. This together with the fact that the disease is mild and does not pose a threat to life makes this process irrelevant.
2. Which doctor should I see in case my child has several soft tissue swellings?
A pediatrician, orthopedic specialist or a dental surgeon are the doctors who will be able to diagnose and offer further advice about this condition
3. My child has been diagnosed as having Infantile Cortical Hyperostosis. Should I be worried?
No. Infantile Cortical Hyperostosis is a relatively mild condition and so far no fatalities have been reported. Therefore, there is no need to worry as such, but make sure that your child has regular check ups.
4. What are the complications of Infantile Cortical Hyperostosis?
Complication are extremely rare and include deformities of the involved bones, inequalities in limb-length.
5. What other conditions mimic Infantile Cortical Hyperostosis?
Differential diagnosis include
Osteomyelitis
Trauma
Hypervitaminosis A
Hyperphosphatemia
Scurvy
my baby sarah fought brilliantly against all odds but she could not tolerate the hospitalized infection(septicemia)and died on 8th nov 09.she was admitted for caffeys symptoms but got infected,drs says this that,but i would say one thing before admission drs should know the patient or else why they have admitted my kid,simply to study the case or they dont want to loose study material.end of the day i have lost my darling.
Sayed Aslam
Hubli
india
Its been 4 months ever since my daughter confirmed with Caffeys,she is on naproxen but no signs of improvement her body weight remains the same ever since her birth,her platelet count is more than 9.50 due to which drs are not giving even steroids which may further worsen her condition.she is been through severe pain and fever due to which she hardly sleeps.
MY BABY GIRL IS CONFIRMED WITH CAFFEYS DISEASE,SHOCKING IS NO FAMILY HISTORY DRS SAYS ITS A GENETIC DISEASE AND BABY IS 3 MONTH OLD IS THERE ANY TREATMENT..........
SAYED ASLAM
HUBLI.
INDIA
MY BABY BOY IS HAVING CAFFEY DISEASE, NO FAMILY HISTORY OF CAFFERY, HIS BLOOD TEST SHOWS HIGH HEMOGLOBIN, HIGH PLATELES AND GOANT TROMBOCIATES CELL, HE IS NOW 15 MONTHS, RIGHT RIB , MANDIBLE AND MAXILLE SWELLING, THE SWELLINGIS ALMOST NEARLY ONE YEAR. WHAT TREATMENT DID U GIVE YOUR CHILD
My mother had Caffey disease, I did when I was a child, and now my baby boy also has it. I am very interested to share experiences with other patients...
please let me know the treatment and the time period you all have taken to recover,as my 4 month old baby girl is also suffering from caffeys and her symptoms are very severe.please help me.....
Similar experience-your son is over a year now,how is he getting on?