Saturday, September 21, 2013

Oh this brain of hers...

Last week the girlies had their 6 year well visit. It wasn't the best visit we ever had (for both girls) but probably not the worst. There were a couple of discrepancies with Abby this time around. The doctor found that her tonsils were significantly enlarged, both ears had fluid and her nasal passages were thinned. After hearing that I figured we would just be going back to ENT, not too bad, right? But then she looked in her eyes. And looked and looked and looked. Obviously she was concerned about something she was seeing.

She explained that she saw "something" behind the left eye and she is suspecting increased intracranial pressure. (Just great!) So we may be talking a mild increase in fluid. (Awesome) We could be talking about something bigger than that. (Fantastic) But whatever it is we had to get on it asap.

Since then I have secured appointments in early October for ophthalmology and neuro. In the meantime the pediatrician wrote an RX for a sedated MRI with and without contrast. Copies will be sent to her neurogeneticist so hopefully if there is something emergent someone will pick it up. I am hoping to schedule the MRI for next week. I put the call in to the sedation nurses on Friday and now I have to wait for them to call and screen her.

Here we go again...

Posted by Kristen Fescoe

1 comment:

  1. So I stumbled on this website today after looking up 'rhombencephalosynapsis'. I am a 40 year old male, originally from England. I was born with a condition called Spastic diplegia, a mild form of cerbal palsy, my disability only really consists of a heaving limp and spasms on my right side. Just two years ago I started having vision and headache issues and other pain issues, that I had never had before.

    Due to issues with my insurance I could not get anything checked out, but I was finally able to get some help and went to a neurologist. He was convinced all my symptoms were due to progression of my disability, but since corrective surgery in 1991, I have had no major change. Because the headaches and vision problems continued, I had an MRI last week. I just got the results states my symptoms are consistent with rhombencephalosynapsis. I had never heard of this before, what struck me about your daughter is that I have the same 'bumps' on my forehead since as long as I can remember. They have reduced over the years, but it blows my mind doctors take so long to detect problems in people.

    Thank goodness your daughter is so young and problems have been detected now, rather than later. Just wanted to say hope everything gets better for Abby! :)