Dear Rocio I don't have any experience of this rare genetic syndrome but understand that there can often be mild to severe learning difficulties, fine and gross motor mobility and difficulties with expressive speech which may be important in your work. Here are some other points of information I have cut and pasted for you. The most common clinical features are: short fifth fingers and/or toes absent or under-developed nails on the fifth fingers and/or toes characteristic facial features (thick, bushy eyebrows, long eyelashes, a wide mouth with thick lips, a flat nasal bridge and a wide nasal tip) mild to severe developmental delay (see entry Global Developmental Delay) or learning disability (see entry Learning Disability). Excess body hair (called hypertrichosis or hirsuitism, depending on the pattern) and sparse scalp hair are also very common. Expressive speech delay is often particularly affected, although children may also have difficulties with their gross motor skills (e.g. sitting and walking), fine motor skills (e.g. hand use) and with their hearing and vision. Individuals with Coffin-Siris syndrome often have problems with feeding and growth. They may be more bendy (lax-jointed) or have lower muscle tone than other children. Other problems include spinal curvature, recurrent infections and unusual teeth. Less commonly, heart, gut, brain or kidney problems, a cleft palate, seizures, hernias and tear duct abnormalities may be found. Not all of these features would be expected to be found in one individual. It sounds like quite a complex set of problems for her to have to live with. I hope this helps Best wishes Jane -----Original Message----- From: list-manager@psychotherapyresearch.org [mailto:list-manager@psychotherapyresearch.org] On Behalf Of Rocío Escobar Sent: 26 March 2015 13:36 To: caftr@psychotherapyresearch.org Subject: CaFTR Coffin- Sirus Syndrome Hi everyone! Im Rocio from Chile and i have a question, i have a patiente of 11 years old with a coffin- sirus syndrome that it is very rare genetic syndrome and she is with me because she have problems with the impulse control but to much so someone have more information about this syndrome that can help me to know more about how to treat her, thank you so much, sorry for my english is not to good Take care Enviado desde mi iPhone > El 26-03-2015, a las 10:13, Geoffrey Goodman <Geoffrey.Goodman@liu.edu> escribió: > > Perfect! Thanks so much, Gunnar. > > Geoff > > Geoff Goodman, Ph.D., ABPP, FIPA, CST, CSAT-S, CMAT-S Associate > Professor Clinical Psychology Doctoral Program Long Island University > 720 Northern Blvd. > Brookville, NY 11548 > (516) 299-4277 > http://myweb.cwpost.liu.edu/ggoodman/home.htm > ________________________________________ > From: list-manager@psychotherapyresearch.org > [list-manager@psychotherapyresearch.org] on behalf of Gunnar Carlberg > [gunnar.carlberg@ericastiftelsen.se] > Sent: Thursday, March 26, 2015 8:20 AM > To: caftr@psychotherapyresearch.org > Subject: Re: CaFTR RE: book recommendation > > Hi Geoff, > > I can recommend two books written by a psychotherapist, Elisabeth Cleve, who worked at the Erica Foundation in Stockholm, Sweden. They are examples of stories from inside the psychotherapist’s room. Her work is based on a psychodynamic approach but could also be labeled integrative. > > Cleve, E. (2004). From Chaos to Coherence: Psychotherapy with a Little Boy with ADHD. London: Karnac Books. > Cleve, E. (2008). A Big and a Little One is Gone. Crisis Therapy with a Two-Year-Old Boy. London: Karnac Books. > > Best wishes > > Gunnar Carlberg > > > Professor > Department of Education > Stockholm University > > The Erica Foundation > Odengatan 9 > SE 114 24 Stockholm > Sweden > gunnar.carlberg@ericastiftelsen.se<mailto:gunnar.carlberg@ericastiftel > sen.se> > > 26 mar 2015 kl. 11:49 skrev Geoffrey Goodman <Geoffrey.Goodman@liu.edu<mailto:Geoffrey.Goodman@liu.edu>>: > > Hi All, > > I realize now that I didn't make myself clear yesterday. I'm looking for a book in which the author, who is the therapist, reports on a treatment of a patient from an integrative approach. I mentioned "Dibs" only because that is the sort of case study I'm looking for--except instead of a child-centered approach, I'm looking for a book whose therapist worked with their child patient from an integrative approach (e.g., combining CBT and psychodynamic techniques in their work). Thanks a lot. > > Geoff Goodman > > Geoff Goodman, Ph.D., ABPP, FIPA, CST, CSAT-S, CMAT-S Associate > Professor Clinical Psychology Doctoral Program Long Island University > 720 Northern Blvd. > Brookville, NY 11548 > (516) 299-4277 > http://myweb.cwpost.liu.edu/ggoodman/home.htm > ________________________________________ > From: list-manager@psychotherapyresearch.org > [list-manager@psychotherapyresearch.org] on behalf of Taylor > Jacqueline [Jacqueline.Taylor@alderhey.nhs.uk] > Sent: Thursday, March 26, 2015 4:54 AM > To: caftr@psychotherapyresearch.org > Subject: CaFTR RE: book recommendation > > its 'In Search of Self' by Virginia Axline > > ________________________________________ > From: list-manager@psychotherapyresearch.org > [list-manager@psychotherapyresearch.org] on behalf of Geoffrey Goodman > [Geoffrey.Goodman@liu.edu] > Sent: 25 March 2015 19:26 > To: caftr@psychotherapyresearch.org > Subject: CaFTR book recommendation > > Hi Everyone, > > I'm looking for a book (like "Dibs") that presents a case study of a child or adolescent who was treated with an integrative therapy approach. Does anyone know of any such book? Thanks in advance for your help. > > Geoff Goodman > > Geoff Goodman, Ph.D., ABPP, FIPA, CST, CSAT-S, CMAT-S Associate > Professor Clinical Psychology Doctoral Program Long Island University > 720 Northern Blvd. > Brookville, NY 11548 > (516) 299-4277 > http://myweb.cwpost.liu.edu/ggoodman/home.htm > ------------------------------------------------------------------------ This email is confidential and is intended solely for the person or entity to whom it is addressed. If this is not you, please forward the message to mail.administrator@uclh.nhs.uk. We have scanned this email before sending it, but cannot guarantee that malicious software is absent and we shall carry no liability in this regard. We advise that information intended to be kept confidential should not be sent by email. We also advise that health concerns should be discussed with a medical professional in person or by telephone. NHS 111 can also provide advice. 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