BESS Syndrome (Benign Enlargement of the Subarachnoid Spaces)

tiffany0727

Hey.  I was wondering if anyone has a child who has been diagnosis with BESS or  Benign Enlargement of the Subarachnoid Spaces.  My 16 month old boy just had a neurological appointment today and the doctor strongly feels he has BESS.  However, there is nothing really out there regarding BESS.  Can anyone help?  His soft spots on his head are still very open and that worries her, and she says its very abnormal for him to have such big soft spots at this age.  He also has a rather large head and forehead.  Our pediatrician has also talked about hydrocephalus as well.  MRI is not until the end of the month, but I would like to prepare myself.  My son also has very low muscle tone and loose joints.  He isn't walking or trying to walk.  He kind-of goes limp when you try to walk him.  He is rather smart though.  Great social, problem solving skills, etc.  His delays are in gross motor, fine motor, and speech.  

Assembly_Reqd

I have never heard of BESS. Maybe because it is benign?

Honestly, I think the neuro did not want you to google yourself into a crisis of "what ifs" before you get the MRI done. My advice is to step away from Dr. Google even when you do figure out what is going on. Dr. Google SUCKS. He is not anyone's friend around these parts.

You cannot prepare yourself until you know what is actually going on. (If anything) My kid also had a large head and a HUGE soft spot which is just now closing up. Neither was caused by hydro.

tiffany0727

Yeah, you're right.  Thanks to the hubbie, I have some access to medical journals and such.   I want something more factual and reliable than some of the things on "Dr. Google."  I have a special ed background and I'm very familiar with hydrocephalus, but not BESS.  My husband and I are concerned that something is wrong and have been for a while. I just want to know what BESS is and if anyone has had personal experience with it.  There isn't much out there.  From what I've read the children are more acceptable to brain bleeds from even minor falls.  

reabt

Hi, no info on BESS, but I wanted to say that I am glad you got some anwsers at your appointment. I had been thinking about you and was hoping it went well! I know I had difficulty finding information of benign extra axial fluid collection of infancy, so I tried to see if there were any other names for it and there were (benign macrocrania). So maybe see if there are any other names for BESS? Just a thought? Fingers crossed that the MRI goes well.