After months and months of random high fevers Dallin was finally successfully diagnosed with Periodic Fever Syndrome. There are many variations of this syndrome some that have a specific genetic component that is now recognized but his type has yet to be identified as genetic. That does not mean it is not genetic just that research has yet to identify it.
David and Dawson both had the same syndrome so we know it is genetic but again there is not enough research. Until I actually did the research I was unaware of the connection between the three.
"This syndrome includes recurrent episodes of fever with aphthous stomatitis (mouth sores) and pharyngitis (sore throat with redness). Occasionally, there also may be exudate (white patches on the tonsils) and enlarged lymph nodes in the neck (adenitis). Episodes of fever start suddenly and last for 3-7 days. Fevers occur routinely every few weeks; often, families know the exact day when an attack will start. Some children have other symptoms like joint pain, abdominal pain, headache, vomiting or diarrhea. Children are completely well between attacks."
Dallin went through months of fevers with no real explanation before being admitted several times to Primary Children's Hospital for help. While the ER was not much of a help they were able to make him comfortable.
Which led me to begin my research. After spending a few hours on the Internet I was able to identify his syndrome. Find a doctor in Salt Lake City that specializes in periodic fever syndrome and ask for her help! Finally a doctor that understood and did not want to just keep masking the problem!!! After in depth blood work and genetic testing tonsillectomy was suggested.
While there is no known reason tonsil removal seems to cure this syndrome in over 90% of cases. The odds were absolutely worth taking especially because this is what cured David and Dawson.
These pictures are all various fever episodes.
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1 comment:
Hi,
I’ve been doing tons of research and am so glad I found your blog. I think my little boy also has Periodic Fever Syndrome. I was wondering who the doctor is that helped you. We have been to ER’s and a couple pediatricians with no answers. Any info you could give me would be great. Thank you. :)
- Emily
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