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Coffin Siris Syndrome
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Coffin Siris Syndrome
Advice
Advice of Coffin Siris Syndrome
Mandibular Distraction at 3 months old
by Kate
Not easy for the parents to understand what is going on with their kids until you have the diagnosis. After, it help to understand.
by SBB
My family loves me so much!
by Casey
Receiving the genetic diagnosis
by Pauline
Physical therapy
by Karin
My grandson
by Tammy
Support
by S
Routine
by Naomilea
Daughter has css
by Laci
Live in the present not whats to come
by Nohenstrong2019
Специальное лечебное питание Ресурс 2.0 Файбер
by Evgeniya
Brooke is an extremely friendly, funny and sassy little diva.
by Brookie Cookie
I have seizures, and medication has reduced them to a few times per year.
by Thomas
Insisting on oral feeding opportunities without the NG tube in
by Kate
physiotherapie, occupationnal therapy, speech therapy.
by SBB
Having a supportive therapeutic team
by Pauline
Equestrian therapy
by Karin
Him overcoming obstacles
by Tammy
Love
by S
Botox in my legs
by Naomilea
Be ready and willing to accept what comes
by Nohenstrong2019
Введение питания 100 мл/час
by Evgeniya
Brooke blows raspberries to show disapproval
by Brookie Cookie
I have Crohn's Disease and have a closely controlled diet.
by Thomas
Using surgical grade face masks to protect her from infection, allowing her to attend school regularly and be in hospital less
by Kate
Having a very supportive family.
by SBB
Having faith in God’s Will
by Pauline
Protein shakes
by Karin
The love he shows
by Tammy
Time
by S
Keppra for my seizures
by Naomilea
Self care is key (Mother of Ccs son and still struggling with this)
by Nohenstrong2019
Использование помпы для питания
by Evgeniya
I am unable to chew food so everything is blended to a consistency of rice.
by Thomas