eagle syndrome

[AlexandSamsMom]

My 7 year old daughter has an undiagnosed genetic syndrome.  She was hospitalized the past few days for a long term fever associated with sinusitis as a secondary infection from Influenza B.  She had a CT scan of her sinuses and they had an incidental finding of Eagle's Syndrome.  There isn't a lot of information available on eagle syndrome but what I am reading about it states that its painful.  Now, she is nonverbal and has a real hard time communicating where she is in pain.  She does hold her neck a lot and part of me wonders if its from the eagle syndrome.  She had 16 ear infections by the time she was 2 but did not receive tubes as all the fluid would clear between infections.  She has had about 4 infections since we moved to AZ in August 2006.  Once she turned 3 she started getting recurrent sinusitis but it subsided until we moved to AZ.  Ok...I am rambling now :)

I was basically curious if you had anything to say on Eagle syndrome.  It may be more of an ENT question instead of just an "e" question :).  She will be seeing an ENT after she is done with this 2 weeks of omnicef for this nasty sinusitis.

[Eric P Wilkinson, MD]

The CT scan probably showed an elongated styloid process, which in of itself is not Eagle's syndrome.  Eagle's syndrome is an elongated styloid associated with shooting pain and other sensations.

Treatment is difficult and can involve styloidectomy, removal of the styloid process.  Unless you had strong evidence that she had pain from the styloid, I think it would be difficult to make a case for treating it.

Has she had an immune system evaluation?  

Hope this helps.  Good luck!

This answer is not intended as and does not substitute for medical
advice - the information presented is for patients education only.
Please see your personal physician for further evaluation of your
individual case.

[AlexandSamsMom]

Her CT scan interpretation went like this, "Incidental note is made of elongated styloid processes and calcification along the stylohyoid ligaments bilaterally extending nearly to the level of the hyoid bone compatible with Eagle syndrome"

The sinus part said this, "The left maxillary sinus, left-sided ethmoid air cells and left frontal sinus are clear.  There is extensive mucosal thickening and fluid opacification, with air-fluid levels identified in the sphenoid sinuses bilaterally, multiple right-sided ethmoid air cells, the right frontal and right maxillary sinuses.  There is a narrowing of the right ostiomeatal unit due to mucosal thickening.  The left ostiomeatal unit is patent.  There is mucosal thickening in the region of the left frontal ethmoidal recess.  There is bony nasal septal deviation."

Her chest x-ray was negative.

She is now on 14 days of omnicef at 4.5ml of 250mg/5ml strength.  She has received since the 14th omnicef 5ml of 150 (whatever the lower strength is)mg/5ml that was a 10 days script that she took 5 of because they then started rocephin injections on the 20th.  The original omnicef was for an ear infection.  That was clear when she went in on the 19th and they rocephin (1gm) injections were started due to the prolonged fever (since the 8th).  She had three 1 gm injections..one on each the 19th, 20th, and 21st.  Each days her fever was in the 103s with friday being the Tmax at 103.6F.  I took her back for follow up on the 26th and that is when they admitted her for prolonged fever and weight loss of approximately 2 pounds total.  She is already under the 5th percentile for weight and not on the chart for height, so weightloss isn't a good thing.  Nobody in the hosp was worried about it, so I am trying no to either.  At the hosp she had CBC/BMP and UA done, oh and a CRP and Sed rate. Plus a nasal swab that came back + for influenza B.  They are not sure where in this puzzle the Flu took place though.  Her dr seemed to think that the acute sinusitis was the culprit in the hosp because of her increase in polys between Wed to Fri of 31 to 63.9 respectively.  Her WBCs were 3.4 and 5.7 respectively and her ESR was 31 and 40 respectively.  CRP was done only on Wed night and was 1.8.  She received 550mg/IV BID in the hosp totally 3 doses.  She also started her omnicef there having taken 2 doses total and has now had 4 total.

We came home on Friday night and the kid has done a very abnormal amount of sleeping...way out of the ordinary for her.  I am chalking it up to having had been sick for so long and that is has just taken a toll on her body.  She is drinking enough to produce at least 2 wet diapers/day and eating sparsely. Her sleeping is very remarkable to me.  She had a fever this morning of 102.3 axillary.  In the hosp her Tmax was 38.9 axillary.  It seems to me that her fevers improve with the rocephin but then after we are off of it for a few days that it spikes back up.  

I dunno.  I am just a worried Mama that doesn't like to see her kiddo sick for so long.  

We are to follow up with ENT IF she doesn't improve after her 14 days of omnicef.  I don't think I can go on like this for another 2 weeks.  She will follow up with her pediatrician this week per discharge order.  I am thinking probably sooner than later...Tuesday is what I'd like.  I am also thinking that she should be in with an ENT no matter what considering her hx and the possibility of Eagle syndrome.  

Oh and to answer your ? about the immune workup...that would be a no.  What tests are involved in that workup?

Thank you for your insight and any further insight you have.  I appreciate the extra info and think that its a great source for education.