Geneticist is thinking that all efforts should be concentrated on overgrowth syndromes as ds2 is SO big for his age. Rather hoping this is the case - as there seems to be some hope that when growth rate slows down, brain connections improve etc..
Also, he is being tested for Angelman Syndrome (which is perhaps more my fear than the medics)
We are off to BIBIC on Tuesday night and I am really looking forward to it as they sound so upbeat on the phone that it will be nice to be around positive people for a while Will report back idc!
Please do report back Merlot. Can you say how long it took for an appt after you first got in touch with BIBIC, and was it something recommended by doctors or is it something you have just been pro-active about and organised yourself?
Pages BIBIC is a charity run assessment centre and parents self fund to attend a three day assessment of their childs difficulties.
I know quite a few of us here have been there and have all gained many things from our attendance.
If you contact BIBIC they will be happy to arrange a telephone assessment...takes about an hour...and then they can tell you if they think they can be of help to you. Merlot was lucky she didnt wait long because she took a cancellation...I waited 4 months for my appointment for J to be seen.
The initial telephone assessment is free of charge and the three day assessment costs £700 but they have a bursary system and their policy is to never turn away a family because of lack of funding.
Whilst at BIBIC your child is seen by an OT, Physio, SALT, nutrionalist and GP. There is a therapist who is assigned to you and she works with you throughout your stay.
Our report from BIBIC was instrumental in us gaining J's statement....we paid extra to undergo the EP assessment.
Give them a call if you are concerned...you have nothing to loose.
Had our phone interview today for BIBIC and think we will almost certainly go.
Merlot - I was about to say that I knew someone going this week but quickly stopped myself as thought they might think it odd that the only name I knew belonged to a bottle of wine!! Hope you have a good/useful time there. Please report back.
I had my telephone interview when Blossomhill was there and they happened to say that a little was there with her older brother and I wanted to shout - `I know them its Blossom and her family! and then thought better of it '
I will certainly report back. I am excited about it, but apprehension is creeping in a bit now!
hello everyone just wanna say am looking into taking part in BIBIC assesment with my girl who is 2.9 and has learning difficulities, she is sensory impaired and is epileptic and not yet mobile looked into the BIBIC and sounds great hoping it will have positive impact on my girls life.
thank you to the moms who have shared their views on this subject.